Two or More

Time for another reader question, but first, let’s pay attention to what day today is. Many people see today as the day for bar-b-ques or backyard ball games (or, at least, they did before Covid 19). When I married Bear a little more than seven years ago, he explained about Memorial Day. I knew it was to honor those who died protecting us, but it was so much more meaningful when explained by a veteran… someone who didn’t die protecting us and lived on to meet me and marry me. So give some quiet thoughts to these men and woman today, will you?

Now, the question. This reader has both lupus like immune mediated glomerular nephritis and Wegeners vasculitis with kidney involvement. Her question is how does she handle both?  And, here I thought I had it bad with pancreatic cancer (now gone), Chronic Kidney Disease, diabetes, and a whole host of what I consider lesser diseases!

Starting slowly is a must here since I am like a fish out of water with these two diseases. According to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088,

”Granulomatosis with polyangiitis is an uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.

Formerly called Wegener’s granulomatosis, this condition is one of a group of blood vessel disorders called vasculitis. It slows blood flow to some of your organs. The affected tissues can develop areas of inflammation called granulomas, which can affect how these organs work.

Early diagnosis and treatment of granulomatosis with polyangiitis might lead to a full recovery. Without treatment, the condition can be fatal.”

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4757-granulomatosis-with-polyangiitis-gpa-formerly-called-wegeners/management-and-treatment tells us,

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.”

Okay, got it. Now let’s take a look at lupus like immune mediated glomerular nephritis. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064 reminds us about lupus:

“Lupus: A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. The first symptom is a red (or dark), scaly rash on the nose and cheeks, often called a butterfly rash because of its distinctive shape. As inflammation continues, scar tissue may form, including keloid scarring in patients prone to keloid formation. The cause of lupus is unknown, although heredity, viruses, ultraviolet light, and drugs may all play a role. Lupus is more common in women than in men, and although it occurs in all ethnic groups, it is most common in people of African descent. Diagnosis is made through observation of symptoms, and through testing of the blood for signs of autoimmune activity. Early treatment is essential to prevent progression of the disease. A rheumatologist can provide treatment for lupus, and this treatment has two objectives: treating the difficult symptoms of the disease and treating the underlying autoimmune activity. It may include use of steroids [Gail here: Remember they’re used in treating this reader’s other disease, too.] and other anti-inflammatory agents, antidepressants and/or mood stabilizers, intravenous immunoglobulin, and, in cases in which lupus involves the internal organs, chemotherapy.”

But our reader has lupus LIKE immune mediated glomerular nephritis, so she may need to deal with the symptoms, but not the treatment. Wikipedia at https://en.wikipedia.org/wiki/Immune-mediated_inflammatory_diseases informs us,

“An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.”

That’s as close as I could get to the definition of immune mediated.  We know that glomerular means of or about the glomerulus. Dictionary.com at https://www.dictionary.com/browse/glomerular helped me out here:

“Also called Malpighian tuft. a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

And nephritis? After a decade of writing this blog, we probably all know that’s an inflammation of the nephrons.

Let’s combine the pieces to see what we get.  The nephron’s glomeruli are inflamed in the same way lupus inflames the organs. Remember that GPA also causes inflammation. (By the way, this is the perfect point in the blog to remind you I am not a doctor and have never claimed to be one.)

But how is it treated? Here’s where I admit defeat. There is quite a bit of information available on Lupus, Lupus Nephritis, and the like. But I could not find anything that includes ‘Lupus like.’

The commonality between the two diseases seems to be inflammation. But isn’t that at the root of all Chronic Kidney Disease? I admit to being surprised twice while writing this particular blog:

• GPA was called by its older name by the doctor.
• The dearth of treatment information for lupus like immune mediated glomerular nephritis.

Until next week,

Keep living your life!

AKI & CKD

Aha! Dana contacted me and here’s the blog I promised him. (Still looking for the request from the woman who waited so patiently for me to recover from my surgery. Please contact me again.) Dana asked about AKI, Acute Kidney Injury, and how aggressively his nephrologist should be pursuing treatment of this. He and his nephrologist feel that his AKI may have been caused by strep.

I know I write about CKD, Chronic Kidney Disease, so what is AKI? The glossary in my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, tells us ‘acute’ means:

“Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.” This is what I wrote about AKI and CKD in SlowItDownCKD 2017,

“I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

‘Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease. Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times.’

Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine (Update: Now one out of seven.) in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD (Cardiovascular Disease). Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {if you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.”

Dana’s nephrologist put him on a regiment of prednisone for two months. Why? Well, prednisone is an anti-inflammatory drug. WebMD at https://www.webmd.com/a-to-z-guides/what-is-acute-kidney-failure#1 offers the following as possible causes of AKI. Notice the very last one and you’ll see how prednisone may be helpful.

1. “Something is stopping blood flow to your kidneys. It could be because of:

• An infection
• Liver failure
• Medications (aspirin, ibuprofen, naproxen, or COX-2 inhibitors, like Celebrex)
• Blood pressure medications
• Heart failure
• Severe burns or dehydration
• Blood or fluid loss

1. You have a condition that’s blocking urine from leaving your kidneys. This could mean:

• Bladder, cervical, colon or prostate cancer
• Blood clots in your urinary tract
• An enlarged prostate
• Kidney stones
• Nerve damage in your bladder

1. Something has directly damaged your kidneys, like:

• Blood clots
• Cholesterol deposits
• Medications that can directly damage kidneys, including NSAIDs like ibuprofen and naproxen, chemotherapy, and antibiotics
• Glomerulonephritis (inflamed kidney filters; can be caused by an infection, autoimmune disease (like lupus), multiple myeloma, scleroderma, chemotherapy drugs, antibiotics, or other toxins)”

Now we know AKI and Acute Kidney Failure are not the same thing, but it is possible that this nephrologist is using prednisone in an attempt to avoid Acute Kidney Failure.

One thing Dana asked that made me stop cold is “How do you cope with the inevitable aspects?” They are not inevitable, Dana. I am a lay person who has managed to keep my CKD at stage 3 for 11 years. I am also not a magician. What I am is someone who follows the guidelines for keeping my kidneys as healthy as possible.

You’ve already seen a nutritionist – hopefully a renal nutritionist, since a healthy diet is not necessarily a renal healthy diet – so you’re aware of the nutrition aspect of protecting your kidneys. But there’s more. Do you smoke or drink? If so, stop. Do you exercise? If not, start… but with your nephrologist’s supervision. Are you getting adequate sleep and rest? Here’s the hardest guideline: try to avoid stress. Of course, if you have a stressful life, avoiding stress can just be another stress.

As to how aggressively you should expect your nephrologist to treat your AKI (or the CKD resulting from it) really depends upon you and your nephrologist. For example, some think stage 3 is barely CKD and urge you to just keep watch. Others, like my nephrologist, take CKD seriously and have their nutritionists train you re the renal diet and speak with you themselves about the guidelines. As for AKI, again it depends on you, your nephrologist, and the severity of the AKI. Since you have waste product buildup and inflammation, you may need dialysis or a hospital stay… or watchful waiting while taking a medication such as prednisone.’

There seems to be quite a lot of leeway as to the treatment you and your nephrologist decide upon.

Until next week,

Keep living your life!

Nephritis without the Lupus

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Recently, I wrote about Lupus Nephritis. As one reader pointed out, it is possible to have Nephritis without Lupus. Let’s take a look at how that works.

According to MedicalNewsToday at https://www.medicalnewstoday.com/articles/312579.php,

“Nephritis is a condition in which the nephrons, the functional units of the kidneys, become inflamed. This inflammation, which is also known as glomerulonephritis, can adversely affect kidney function.

The kidneys are bean-shaped organs that filter the blood circulating the body to remove excess water and waste products from it.

There are many types of nephritis with a range of causes. While some types occur suddenly, others develop as part of a chronic condition and require ongoing management.”

Of course! ‘Itis’ means inflammation, while ‘neph’ means kidney. It’s amazing what you can remember learning in college over 50 years ago when you’re 72.

Hmmm, what do they mean by “many types of nephritis”? DoctorsHealthPress at doctorshealthpress.com/vital-organs/kidneys/types-nephritis-causes-symptoms-prevention/lists them for us:

“1. Interstitial Nephritis                    

Interstitial nephritis is characterized by swelling between the tubules and kidneys. The kidney tubules reabsorb water and important substances from kidney filtration, and substances are secreted through urination.

Interstitial nephritis can be acute or chronic in nature. Acute interstitial nephritis is typically the result of an allergic reaction. Over 100 different medications cause interstitial nephritis, such as antibiotics, non-steroidal anti-inflammatory drugs (NSAIDs), and proton pump inhibitors.

Non-allergic interstitial nephritis causes include high calcium levels, low potassium levels, and autoimmune disorders.

2. Pyelonephritis

Acute pyelonephritis is a severe and sudden kidney infection. Consequently, the kidneys will swell, which may lead to permanent damage. Frequent occurrences are known as chronic pyelonephritis.

The infection will begin in the lower urinary tract in the form of a urinary tract infection (UTI). Bacteria enter the body through the urethra and spread to the bladder. At that point, bacteria will travel from the ureters to the kidneys.

3. Glomerulonephritis

Glomerulonephritis refers to a range of kidney conditions that cause inflammation in the very small blood vessels in the kidneys, which are called glomeruli.

It is also called glomerular disease or glomerular nephritis. When the glomeruli become damaged, the kidney can no longer efficiently remove excess fluids and waste.

4. Lupus Nephritis [Gail here: This is they type I recently wrote about.]

Lupus nephritis is inflammation of kidneys caused by the autoimmune disease known as systemic lupus erythematous (SLE)—also called lupus. This is where the body’s immune system targets its own tissues.

As many as 60% of lupus patients will later get lupus nephritis. The most common symptoms include dark urine, weight gain, high blood pressure, foamy urine, and the need for nighttime urination.

5. IgA Nephropathy (Berger’s Disease)

IgA (immunoglobulin A) nephropathy is also called Berger’s disease. The kidney disease occurs when the antibody IgA lodges within the kidneys.

Over time, this leads to local inflammation, which interferes in the kidneys’ ability to filter waste from the blood. It is a progressive disease that may lead to end-stage kidney failure.

6. Alport Syndrome

Alport syndrome is an inherited disease caused by genetic mutations to the protein collagen. It can lead to kidney failure, hearing problems, and vision issues.

It will often run in families, and the severity is greater in men. Common symptoms include high blood pressure, protein in the urine, blood in the urine, and swelling in the ankle, legs, feet, and around the eyes.

The genetic types of Alport syndrome include X-linked Alport syndrome (XLAS), autosomal recessive Alport syndrome (ARAS), and autosomal dominant Alport syndrome (ADAS).”

I usually move on to symptoms next but – as you can see – DoctorsHealthPress already took care of that for us. Thank you to DoctorsHealthPress.

Healthline (Yep, that’s the same Healthline that awarded SlowItDownCKD a place among the top six kidney disease blogs in both 2016 & 2017.) at https://www.healthline.com/health/acute-nephritic-syndrome#types offered more detail about the cause of several acute nephritis diseases:

“Interstitial nephritis

In interstitial nephritis, the spaces between the kidney tubules become inflamed. This inflammation causes the kidneys to swell.

Pyelonephritis

Pyelonephritis is an inflammation of the kidney, usually due to a bacterial infection. In the majority of cases, the infection starts within the bladder and then migrates up the ureters and into the kidneys. Ureters are two tubes that transport urine from each kidney to the bladder.

Glomerulonephritis

This type of acute nephritis produces inflammation in the glomeruli. There are millions of capillaries within each kidney. Glomeruli are the tiny clusters of capillaries that transport blood and behave as filtering units. Damaged and inflamed glomeruli may not filter the blood properly. Learn more about glomerulonephritis.

What causes acute nephritis?

Each type of acute nephritis has its own causes.

Interstitial nephritis

This type often results from an allergic reaction to a medication or antibiotic. An allergic reaction is the body’s immediate response to a foreign substance. Your doctor may have prescribed the medicine to help you, but the body views it as a harmful substance. This makes the body attack itself, resulting in inflammation.

Low potassium in your blood is another cause of interstitial nephritis. Potassium helps regulate many functions in the body, including heartbeat and metabolism.

Taking medications for long periods of time may damage the tissues of the kidneys and lead to interstitial nephritis.

Pyelonephritis

The majority of pyelonephritis cases results fromE.coli bacterial infections. This type of bacterium is primarily found in the large intestine and is excreted in your stool. The bacteria can travel up from the urethra to the bladder and kidneys, resulting in pyelonephritis.

Although bacterial infection is the leading cause of pyelonephritis, other possible causes include:

• urinary examinations that use a cystoscope, an instrument that looks inside the bladder
• surgery of the bladder, kidneys, or ureters
• the formation of kidney stones, rocklike formations consisting of minerals and other waste material

Glomerulonephritis

The main cause of this type of kidney infection is unknown. However, some conditions may encourage an infection, including:

• problems in the immune system
• a history of cancer
• an abscess that breaks and travels to your kidneys through your blood

It certainly looks like there’s a lot more to nephritis than we’d thought.

Until next week,

Keep living your life!

Another Kind of Kidney Disease

While I’m still recuperating, I’ve had plenty of time to read Twitter articles, among other things. One topic I’ve been reading about is lupus nephritis. I think we’ve all heard of lupus, but just in case, here’s a definition from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064.

“A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system.”

Did you catch the mention of kidneys in the above definition? That’s where the nephritis part of the condition comes in. By now, we’re all probably tired of being reminded that ‘neph’ means relating to the kidneys (although in non-medical terms, it means relating to the clouds) and ‘itis’ means inflammation. Nuts! I just reminded you again. Let’s ignore that. So, lupus nephritis actually means

“… a kidney disorder [which] is a complication of systemic lupus erythematosus.”

Thank you to MedlinePlus at https://medlineplus.gov/ency/article/000481.htm for the definition. Oh, “systemic lupus erythematosus” refers back to autoimmune disease. Still, the word “erythematosus” puzzled me. I finally figured it out after realizing I probably wasn’t going to get a definition since almost all the entries were for lupus erythematosus. Remember, I studied Greek & Latin roots way, way back in college. It means red and is from the Greek. I get it. Sometimes, lupus patients have a red rash in butterfly form across their face.

So, how do you develop this particular kidney disease? What better place to find out than Lupus.org at https://www.lupus.org/resources/how-lupus-affects-the-renal-kidney-system#.

“Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body.”

Hmmm, no lupus equals no lupus nephritis. However, if you do have lupus, you may develop lupus nephritis.

Let’s say hypothetically that you or a loved one (or even your neighbor down the block) has lupus and is concerned about developing lupus nephritis. How would they know if they were developing it? I had to look no further than the National Kidney Foundation at https://www.kidney.org/atoz/content/lupus.

“Lupus nephritis can cause many signs and symptoms and may be different for everyone. Signs of lupus nephritis include:

• Blood in the urine (hematuria): Glomerular disease can cause your glomeruli to leak blood into your urine. Your urine may look pink or light brown from blood.
• Protein in the urine (proteinuria): Glomerular disease can cause your glomeruli to leak protein into your urine. Your urine may be foamy because of the protein.
• Edema: Having extra fluid that your kidneys cannot remove that causes swelling in body parts like your legs, ankles, or around your eyes.
• Weight gain: due to the fluid your body is not able to get rid of.
• High blood pressure

I know these may also be the symptoms of Chronic Kidney Disease, but if you have lupus, then they may be symptoms of lupus nephritis. To make things even more complicated, there are five different kinds of lupus nephritis depending upon which part of the kidney is affected.

I was wondering about tests to diagnose lupus nephritis, like we have blood and urine tests to diagnose CKD. Healthline (Now do you see why I was so thrilled to receive their Best Kidney Blogs Award two years in a row?) at https://www.healthline.com/health/lupus-nephritis#diagnosis cleared that up.

Blood tests

Your doctor will look for elevated levels of waste products, such as creatinine and urea. Normally, the kidneys filter out these products.

24-hour urine collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine tests

Urine tests measure kidney function. They identify levels of:

• protein
• red blood cells
• white blood cells

Iothalamate clearance testing

This test uses a contrast dye to see if your kidneys are filtering properly.

Radioactive iothalamate is injected into your blood. Your doctor will then test how quickly it’s excreted in your urine. They may also directly test how quickly it leaves your blood. This is considered to be the most accurate test of kidney filtration speed.

Kidney biopsy

Biopsies are the most accurate and also most invasive way to diagnose kidney disease. Your doctor will insert a long needle through your abdomen and into your kidney. They’ll take a sample of kidney tissue to be analyzed for signs of damage.

Ultrasound

Ultrasounds use sound waves to create a detailed image of your kidney. Your doctor will look for anything abnormal in the size and shape of your kidney.

Yes, I know these are the same tests that are used to diagnose CKD, but if you have lupus, they also can diagnose lupus nephritis.

Okay, now the biggie: How do you treat it if you do have it? The MayoClinic at  https://www.mayoclinic.org/diseases-conditions/lupus-nephritis/diagnosis-treatment/drc-20446438 had some sobering news for us:

“There’s no cure for lupus nephritis. Treatment aims to:

• Reduce symptoms or make symptoms disappear (remission)
• Keep the disease from getting worse
• Maintain remission
• Avoid the need for dialysis or a kidney transplant

Conservative treatments

In general, doctors may recommend these treatments for people with kidney disease:

• Diet changes. Limiting the amount of protein and salt in your diet can improve kidney function.
• Blood pressure medications. Drugs called angiotensin-converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) can help control blood pressure. These drugs also prevent protein from leaking from the kidneys into the urine. Drugs called diuretics can help you get rid of excess fluid.

However, conservative treatment alone isn’t effective for lupus nephritis.

Immune suppressants

For severe lupus nephritis, you might take drugs that slow or stop the immune system from attacking healthy cells, such as:

• Steroids, such as prednisone
• Cyclosporine
• Tacrolimus
• Cyclophosphamide
• Azathioprine (Imuran)
• Mycophenolate (CellCept)
• Rituximab (Rituxan)

When immunosuppressive therapies don’t lead to remission, clinical trials may be available for new therapies.

Treatment options for kidney failure

For people who progress to kidney failure, treatment options include:

• Dialysis. Dialysis helps remove fluid and waste from the body, maintain the right balance of minerals in the blood, and manage blood pressure by filtering your blood through a machine.
• Kidney transplant. You may need a new kidney from a donor if your kidneys can no longer function.”

Help! Running out of room (but we’re done anyway),

Until next week,

Keep living your life!

Dapagliflozin/SGLT2 inhibitors

I’ve been reading a lot about dapagliflozin lately. That’s a word I didn’t know. And this is the perfect opportunity to learn about it. Ready? Let’s start.

The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health at https://medlineplus.gov/druginfo/meds/a614015.html.

“Dapagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in patients with type 2 diabetes (condition in which blood sugar is too high because the body does not produce or use insulin normally). Dapagliflozin is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. It lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. Dapagliflozin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated).

Over time, people who have diabetes and high blood sugar can develop serious or life-threatening complications, including heart disease, stroke, kidney problems, nerve damage, and eye problems. Taking dapagliflozin, making lifestyle changes (e.g., diet, exercise, quitting smoking), and regularly checking your blood sugar may help to manage your diabetes and improve your health. This therapy may also decrease your chances of having a heart attack, stroke, or other diabetes-related complications such as kidney failure, nerve damage (numb, cold legs or feet; decreased sexual ability in men and women), eye problems, including changes or loss of vision, or gum disease. Your doctor and other healthcare providers will talk to you about the best way to manage your diabetes.”

SGLT2 inhibitors? Hey, that was going to be next week’s blog… or so ignorant me thought. The Food and Drug Administration (FDA) at https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/sodium-glucose-cotransporter-2-sglt2-inhibitors explains what a SGLT2 inhibitor is.

“SGLT2 inhibitors are a class of prescription medicines that are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, and empagliflozin. They are available as single-ingredient products and also in combination with other diabetes medicines such as metformin. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. The safety and efficacy of SGLT2 inhibitors have not been established in patients with type 1 diabetes, and FDA has not approved them for use in these patients.”

There are also quite a few warnings about amputations and urinary tract infections caused by SGLT2 inhibitors on this site, although they are dated 8/20/18.

 

So it seems that dapagliflozin is one of several medications classified as SGLT2 inhibitor. So let’s concentrate on SGLT2s inhibitors then. Hmmm, is this some medication requiring injections or do you just pop a pill? Pharmacy Times at https://www.pharmacytimes.com/publications/health-system-edition/2014/september2014/sglt2-inhibitors-a-new-treatment-option-for-type-2-diabetes more than answered my question. It’s their chart you see above this paragraph.

Wait a minute. According to their chart, dapagliflozin is not recommended if your GFR is below 60, or stage 3 CKD. Canagliflozin is not recommended if your GFR is below 45. Your kidney function is a big factor in whether or not this drug can be prescribed for you.

But why? Exactly how do the kidneys process this drug? The following diagram from The National Center for Biotechnology Information, part of the U.S. National Library, which in turn (again) is part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3889318_13300_2013_42_Fig1_HTML.jpg will give you the visual. Basically, the SLGT2 inhibitor prevents the glucose in your blood from re-entering your blood stream after your blood has been filtered. The glucose has nowhere to go, so it exits your body via your urine along with the other wastes.

What about the side effects, since we already know the limitations of prescribing SLTG2 inhibitors? I thought  WebMd at  https://www.medicinenet.com/sglt2_inhibitors_type_2_diabetes_drug_class/article.htm#how_do_sglt2_inhibitors_work might enlighten us and they certainly did.

”On Aug. 29, 2018, the FDA issued a warning that cases of a rare but serious infection of the genitals and area around the genitals have been reported with the class of type 2 diabetes medicines called SGLT2 inhibitors. This serious rare infection, called necrotizing fasciitis of the perineum, is also referred to as Fournier’s gangrene.

SGLT2 inhibitors are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. First approved in 2013, medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, empagliflozin, and ertugliflozin. In addition, empagliflozin is approved to lower the risk of death from heart attack and stroke in adults with type 2 diabetes and heart disease. Untreated, type 2 diabetes can lead to serious problems, including blindness, nerve and kidney damage, and heart disease.

Seek medical attention immediately if you experience any symptoms of tenderness, redness, or swelling of the genitals or the area from the genitals back to the rectum, and have a fever above 100.4 F or a general feeling of being unwell. These symptoms can worsen quickly, so it is important to seek treatment right away.

On May 15, 2015, the FDA informed the public that SGLT2 inhibitors have been associated with increased risk of ketoacidosis in people with diabetes.

Common side effects

The most common side effect of SGLT2 inhibitors include:

• Genital yeast infections in men and women
• Urinary tract infections (UTIs)
• Increased urination

• Kidney problems
• Flu like symptoms
• Constipation
• Nasal congestion
• Urinary discomfort
• Back pain

Serious side effects of SGLT2 inhibitors include:

• Kidney failure
• Hyperkalemia (high levels of potassium in the blood)
• Hypotension (low blood pressure)
• Ketoacidosis
• Increased cholesterol levels

• Serious urinary tract infections
• Increased bladder cancer risk
• Serious allergic reactions
• Low blood glucose (hypoglycemia) when combined with insulin or drugs that increase insulin production
• Dehydration”

Whoa. It looks like there will have to be some serious discussions with your nephrologist before you agree to taking a SLGT2 inhibitor should he or she suggest it. Make sure you have your list of questions ready and someone to listen carefully and take notes.

Until next week,

Keep living your life!

That’s Not a Kind of Kidney Disease. Or Is It?

It’s like I’m attuned to anything kidney. After eleven years of writing about Chronic Kidney Disease, I’ll bet I am. Sometimes, it’s the smallest connection that triggers something in my mind. For example, Sjögren’s syndrome kept nagging at me, although I’d never heard of it as a sort of kidney disease. So, what was it and what did it have to do with the kidneys? I went right to the Sjögren’s Syndrome Foundation at https://info.sjogrens.org/conquering-sjogrens/sjogrens-kidney-disease for information.

“Sjögren’s & Kidney Disease

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

About 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

This information was first printed in The Moisture Seekers, SSF’s patient newsletter for members.”

This reminds me of when I was teaching critical thinking on the college level. First, we’d hit the class with an article about something foreign to them and then, we’d show them how to figure out what it meant. For our purposes, a few explanations and perhaps a diagram or two might be a good place to start.

Tubules, huh? What are those? Actually, the word just means tube shaped. Remembering that renal and kidney mean the same thing, we can see the problem area.

Here’s another picture. This one to show you glomeruli.

Now remember, CKD patients are usually limited as to how much fluid they can drink per day. Too much forces the kidneys to work too hard to clear the urine from your body. Remember the car analogy from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease?

As for potassium, that’s one of the electrolytes CKD patients need to be aware of. This article by Dr. Parker on Healthy Way at http://www.bmj-health.com/what-does-potassium-do/ explains:

“Potassium does many important functions in the body. This essential mineral is mainly found inside the cells of our body. Low potassium levels are associated with many health conditions including hypertension, irregular heartbeat, and muscle weakness. We should take adequate amounts of potassium-rich foods for a healthy life.

Potassium is essential for the heart

We need potassium to maintain the blood pressure within normal range. There should be a balance between sodium and potassium in the body to regulate our blood pressure. Too much sodium and too little potassium can elevate your blood pressure.

In addition, potassium is needed for the contraction of the heart. Potassium levels in the blood should be kept nearly constant or within a narrow range for the proper pumping action of the heart. The heart may stop beating if we have high or low levels of potassium in the blood.

We need potassium for stronger muscles

Most of the potassium in the body is found inside the muscle cells. It is the main positively charged ion inside the cells. It is essential for the contraction of muscles. Low levels of potassium are associated with muscle twitching, cramps and muscle weakness. Very low levels can cause paralysis of the muscles.

Hypokalemic periodic paralysis is a disorder that causes occasional episodes of muscle weakness and paralysis caused by lower levels of potassium in the blood. It is a genetic condition that runs in families.

It is essential for nerve conduction

Sodium and potassium are needed to maintain the electrical potential across the nerve cells. This electrical charge is essential for the conduction of nerve signals along the nerves.

It protects from stroke

Researchers found eating potassium-rich foods is associated with reduced incidents of stroke. A recent study conducted in postmenopausal women supports the findings. One of the co-researchers says, ‘post-menopausal women should eat more potassium-rich foods, such as fruits, vegetables, beans, milk and unprocessed meats in order to lower their risk of stroke and death’.

It is important for water and electrolyte balance in the body

Water and electrolyte balance is maintained by the kidneys. This is one of the important functions of the kidneys. Aldosterone, a hormone secreted by the adrenal glands plays the primary role in the balance of sodium and potassium.

The normal blood level of potassium is 3.5 to 5 mmol/l. A level of less than 3.5 is called hypokalemia, and more than 5 is called hyperkalemia. To achieve the normal blood level, we need to take about 4 to 5 grams of potassium per day. An average size banana will provide about 25% of daily requirement.

It is recommended to eat foods that have plenty of potassium. In addition, your diet should contain low amounts of sodium (salt). Taking supplements is not a good idea. It can cause many side effects.

People who have certain medical conditions such as chronic kidney failure should not eat large amounts of potassium-rich foods.

People who take certain types of medications should consult a doctor about their potassium intake. Some may need additional intake while others may need to restrict the intake of potassium rich foods.”

So, while Sjögren’s syndrome may not be a kind of kidney disease, it can affect your kidneys. Thanks for keeping me company while I made the connection for myself.

Until next week,

Keep living your life!

Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“GFR: Glomerular filtration rate [if there is a lower case ‘e’ before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

• how high their blood pressure is (when untreated),
• whether they have diabetes, and
• how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

GFR  – Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well
the kidneys are functioning.”

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat

The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.

Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.

Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers! As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.   Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #: United States: +1 (562) 247-8422 You will be asked to enter the following Access Code: 399-056-972# Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!

Only One?

Loads of good things have been happening in my family lately, among them a couple of marriages. That, of course, brings new people into the family. There’s always that obligatory meet-the-new-in-laws dinner.  At one of these, a just added family member mentioned that she only had one kidney. Then she asked me what that means as far as Chronic Kidney Disease… and I didn’t know. Today’s blog is for her.

Let’s jump right in with this explanation from the U.S. Department of Health’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at https://www.niddk.nih.gov/health-information/kidney-disease/solitary-kidney.

When a person has only one kidney or one working kidney, this kidney is called a solitary kidney. People born with kidney dysplasia have both kidneys; however, one kidney does not function (top right). When a kidney is removed surgically due to disease or for donation, both the kidney and ureter are removed (bottom right).

Well that was pretty straight forward. I wondered if she should be taking any kind of special cautions. According to the National Center for Biotechnology Information of the U.S. National Library of Medicine, National Institutes of Health, PubMed at https://www.ncbi.nlm.nih.gov/pubmed/16985610,

Removal of one kidney leads to structural and functional changes by the remaining kidney, including increased filtration of the remaining glomeruli. These functional changes have generally been considered beneficial because they mitigate the reduction in the total glomerular filtration rate that would otherwise occur, but experimental evidence suggests that these changes may have an adverse effect on the remaining kidney.

That sounded great… until I got to ‘adverse effect.’ So, naturally, I wanted to know what they meant. The Kidney and Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Solitary_Kidney.php told me what I wanted to know.

If having a single kidney does affect your health, the changes are likely to be so small and happen so slowly that you won’t notice them. Over long periods of time, however, these gradual changes may require specific measures or treatments. Changes that may result from a single kidney include the following:

• High blood pressure. Kidneys help maintain a healthy blood pressure by regulating how much fluid flows through the bloodstream and by making a hormone called renin that works with other hormones to expand or contract blood vessels. Many people who lose or donate a kidney are found to have slightly higher blood pressure after several years.
• Proteinuria. Excessive protein in the urine, a condition known as proteinuria, can be a sign of kidney damage. People are often found to have higher-than-normal levels of protein in their urine after they have lived with one kidney for several years.
• Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

In the nephron …, tiny blood vessels intertwine with urine-collecting tubes. Each kidney contains about 1 million nephrons.

You can have high blood pressure, proteinuria, and reduced GFR and still feel fine. As long as these conditions are under control, they will probably not affect your health or longevity. Schedule regular checkups with your doctor to monitor these conditions.

Wait a minute! Those are also the effects of Chronic Kidney Disease. And as you read on, you’ll see that the precautions are the same as those for someone who already has CKD.

What, then, is my new in-law supposed to do since she has a solitary kidney? I went to Medic8, a new site for me, at http://www.medic8.com/kidney-disorders/solitary-kidney.htm for the following suggestions.

Monitoring

Your doctor should monitor your kidney function by checking your blood pressure and testing your urine and blood once a year.

• Normal blood pressure is considered to be 120/80 or lower. You have high blood pressure if it is over 140/90. People with kidney disease or one kidney should keep their blood pressure below 130/80. Controlling blood pressure is especially important because high blood pressure can damage kidneys.
• Your doctor may use a strip of special paper dipped into a little cup of your urine to test for protein. The colour of the “dipstick” indicates the presence or absence of protein. A more sensitive test for proteinuria involves laboratory measurement and calculation of the protein-to-creatinine ratio. A high protein-to-creatinine ratio in urine (greater than 30 milligrams of albumin per 1 gram of creatinine) shows that kidneys are leaking protein that should be kept in the blood.
• … scientists have discovered that they can estimate a person’s GFR based on the amount of creatinine in a small blood sample. The new GFR calculation uses the patient’s creatinine measurement along with weight, age, and values assigned for sex and race. …. If your GFR stays consistently below 60, you are considered to have chronic kidney disease.

Controlling Blood Pressure

If your blood pressure is above normal, you should work with your doctor to keep it below 130/80. Great care should be taken in selecting blood pressure medicines for people with a solitary kidney. Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) are two classes of blood pressure medicine that protect kidney function and reduce proteinuria. But these medicines may be harmful to someone with renal artery stenosis (RAS), which is the hardening of the arteries that enter the kidneys. Diuretics can help control blood pressure by removing excess fluid in the body. Controlling your blood pressure may require a combination of two or more medicines, plus changes in diet and activity level.

Eating Sensibly

Having a single kidney does not mean that you have to follow a special diet. You simply need to make healthy choices, including fruits, vegetables, grains, and low-fat dairy foods. Limit your daily salt (sodium) intake to 2,000 milligrams or less if you already have high blood pressure. Reading nutrition labels on packaged foods to learn how much sodium is in one serving and keeping a sodium diary can help. Limit alcohol and caffeine intake as well.

Avoid high-protein diets. Protein breaks down into the waste materials that the kidneys must remove, so excessive protein puts an extra burden on the kidneys. Eating moderate amounts of protein is still important for proper nutrition. A dietitian can help you find the right amount of protein in your diet.

Avoiding Injury

…. Having a solitary kidney should not automatically disqualify you from sports participation. Children should be encouraged to engage in some form of physical activity, even if contact sports are ruled out. Protective gear such as padded vests worn under a uniform can make limited contact sports like basketball or soccer safe. Doctors, parents, and patients should consider the risks of any activity and decide whether the benefits outweigh those risks.

I am happy to say I think our new relative is going to find this a comforting blog. I know I did.

Oh, talking about one. I have one desk copy of the now retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 left. Leave a comment if you’d like to have it. All I ask is that you not have received a free book from me before.

Until next week,

Keep living your life!

 

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars”

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20^th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

• Patient-Centered Ensure all product development is patient-centered
• Urgent Create a sense of urgency to meet the needs of people with kidney diseases
• Achievable Ground in scientifically-driven technology development
• Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
• Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
• Additive Address barriers to innovation public/private sectors do not otherwise
• Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

Dare You Have Your First Mother’s Day?

Mother’s Day is this Sunday… and it’s my step-daughter’s first. That led me to remember my first with Ms. Nima Beckie Rosensfit and  I realized I’d never even heard of Chronic Kidney Disease then. But what if I had and I wanted to have a baby. What would I have to know?

That got me going. I know I blogged about this topic in February of this year, but I wanted to see if there was enough information for a part 2 to that blog. But, first, let’s take a look at how pregnancy affects the kidneys in a non-ckd woman.

The US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4089195/  helpful here:

“GFR rises early to a peak of 40% to 50% that of prepregnancy levels, resulting in lower levels of serum creatinine, urea, and uric acid. There is a net gain of sodium and potassium, but a greater retention of water, with gains of up to 1.6 L. Through effects of progesterone and alterations in RAAS, the systemic vascular resistance falls, leading to lower blood pressure and an increased RPF.”

You may need a reminder of some of these terms. Let’s see if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease has their definitions. Aha! There are potassium and creatinine.

““Creatinine is … a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger.

“Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Why is this counteraction important you ask.  This tidbit from SlowItDownCKD 2011 explains:

“Then I found this in BrightHub.com’s February 13th article The Importance of the Potassium and Sodium Balance.

‘When there is potassium and sodium balance, cells, nerves and muscles can  all  function  smoothly.  With  an  imbalance,  which  is almost  always due to both an excess of sodium, and a deficiency of potassium, a set of reactions occurs leading to high blood pressure and unnecessary strain on blood vessels, the heart and the kidneys. Research has shown that there is a direct link between chronic levels of low potassium and kidney disease, lung disorders, hypertension and stroke’.”

And urea? The newly published SlowItDownCKD 2017 contains this information:

“http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

‘Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly or that you are dehydrated (have low body water content).’”

It’s probably common knowledge that serum means in the blood rather than urine and that uric acid is the waste that remains when your body’s cells die. What baffled me was RAAS and RPP. It turns out that RAAS is renin-angiotensin-aldosterone system which, while interesting, would simply take too long to explain for this blog’s purpose. RPF is renal plasma flow. I love words, but this was getting to be a bit much for even me. I wanted to get to CKD in pregnancy. So let’s do that.

Let’s say I needed more reassurance that I could have a baby even though I had CKD. I felt like I found just that when I discovered RareRenal  at http://rarerenal.org/patient-information/pregnancy-and-chronic-kidney-disease-patient-information/and what they had to say about pregnancy and CKD.

“Good antenatal care from the earliest stages of pregnancy improves outcomes generally. This is particularly true for women with CKD. Planning for pregnancy allows women with CKD to get pregnant at the right time, while on the right medications and in the best possible health. To achieve this all women with significant CKD should receive pre-pregnancy advice so that they can assess the potential risk and to ensure that everything is in place to minimise it.

These are the key things to think about before getting pregnant:

When should a woman with CKD get pregnant?  This depends on the nature of the kidney disease. In general if a woman’s kidney function is likely to get worse over time it is better to plan the pregnancy sooner rather than later while function is still good. On the other hand, for a kidney disease that flares up and then settles down, such as Lupus nephritis, it is better to wait until the flare has settled for at least six months. Other factors to take into account are a woman’s age and fertility. They may have had drugs in the past to treat a kidney condition that can impair fertility (e.g. cyclophosphamide). If so they may need to take advice on whether this is an additional problem. Should she get pregnant at all? There are very few women these days who are advised not to get pregnant. Even then it is always up to the woman (and her partner) whether to take the risk. It is much better to be forewarned of the possible problems and to discuss these in advance.

Will she need extra medicines when she’s pregnant?  Women trying to get pregnant should start taking the vitamin folic acid to reduce the chance of their baby having spina bifida, an abnormality of the spinal cord. The normal dose of folic acid is 400ug per day and can be bought over the counter. However, if the folate level is low or a patient is on the drug azathioprine which affects the way folic acid works, the dose of 5mg daily may be prescribed. No other over the counter vitamins are required unless specifically advised by a doctor or midwife. All pregnant patients should avoid additional supplements of vitamin A. If vitamin D levels are low GPs will advise correction with high dose prescribed vitamin D (also known as cholecalciferol). Women with kidney diseases are at higher risk of pre-eclampsia. Aspirin lowers the risk of pre eclampsia, and women with CKD are usually offered a low dose aspirin (75mg once daily) throughout pregnancy unless there are specific reasons not to take it e.g. they are allergic to aspirin. Pregnant women with a high level of protein in their urine have an increased risk of developing blood clots (thrombosis). This can be reduced by small daily injections of low molecular weight heparin. Heparin reduces the way the blood clots. Both pregnancy and CKD can cause a low blood count (anaemia). When combined, anaemia can be more of a problem. Iron tablets or injections may be used and some women need to take the hormone erythropoietin (EPO) as  a weekly or monthly injection to overcome the anaemia. Blood transfusions are usually avoided in pregnancy. Pregnancy alters the control of sugar (glucose) in the body. This may be worse for patients on steroids (e.g. prednisolone), those from an Asian or African background, or who are overweight. Patients may develop a condition called gestational diabetes (diabetes caused by pregnancy) and require treatment with insulin.” How very reassuring. I’m ready… I mean are you ready to have your baby?

Until next week,

Keep living your life!

Something’s Fishy Here

I saw this headline the other day: Another Nail in the Coffin for Fish Oil Supplements. When I read the article, I realized it was referring to fish oil supplements for heart problems. You can read it for yourself at  https://jamanetwork.com/journals/jama/fullarticle/2679051. By the way, JAMA is the Journal of the American Medical Association.

But then I wondered why I’ve been taking it all these years since I don’t have cardiology problems.  Hmmm, I do have osteoarthritis and can’t take NSAIDS. In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, NSAIDS are explained this way:

“Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve, or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Okay, so I don’t take NSAIDS or fish oil supplements for heart problems, but I do take fish oil supplements for osteoarthritis. Well, that’s good since my favored medical food for osteoarthritis – Limbrel – is still in recall by the FDA for possibly causing liver problems. Who wants both liver and kidney problems? Not me.

Anyhoo (as I’ve seen it written), that got me to thinking about osteoarthritis. This is from SlowItDownCKD 2016:

“According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

‘Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the knees, wrists, fingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

I’ve since discovered there’s also psoriatic arthritis. All of these are inflammatory diseases. This is from this week’s newly published SlowItDownCKD 2017 (How about a review on Amazon.com or B&N.com as long as I’ve mentioned the book?):

“Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

Bingo! I take the fish oil supplements for inflammation. Before I forget, inflammation is the topic of one blog or another – and usually several – in each of the books in the SlowItDownCKD series. Wikipedia’s definition helps to explain why:

“Inflammation is part of the complex biological response of body tissues to harmful stimuli, such as pathogens, damaged cells, or irritants, and is a protective response involving immune cells, blood vessels, and molecular mediators. The function of inflammation is to eliminate the initial cause of cell injury, clear out necrotic cells and tissues damaged from the original insult and the inflammatory process, and initiate tissue repair.”

Keep in mind, though, that anyone can edit a Wikipedia entry.

Since I’m writing about inflammation and CKD, I was thrilled to find this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“By the way, are you taking Omega 3 {Fish oil} supplements?  There’s a theory it helps retard the progress of CKD.”

Aha! Now to the heart… I mean the kidneys… of the matter. How do Omega 3 supplements retard the progress of CKD?

Let’s lead off our answer with this quote from the #NephMadness 2017: Nutrition Region article in the March issue of The American Journal of Kidney Diseases at https://ajkdblog.org/2017/03/07/nephmadness-2017-nutrition-region/

“There is some evidence that omega-6 is proinflammatory and omega-3 are anti-inflammatory.”

Of course there’s much more to the article, but it gets pretty technical.

“What’s omega-6?” you ask. I went to my long term buddy The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/heart-disease/expert-answers/omega-6/faq-20058172 for some help in explaining.

“Your body needs fatty acids and can make all but two of them, which is why they are called essential fatty acids. Linoleic and linolenic acids are derived from foods containing omega-6 and omega-3 fatty acids, respectively, which serve different functions in the body. Some of these fatty acids appear to cause inflammation, but others seem to have anti-inflammatory properties.”

But we’re getting far afield from the anti-inflammatory properties of omega-3 that can help retard the progress of CKD. I decided to see what the natural health community had to say about this and discovered the following in Healthy Fellow at http://www.healthyfellow.com/742/fish-oil-and-kidney-health/ :

“However, based on what we know now, it seems that fish oil supports both cardiovascular and renal health in part by moderating blood pressure, heart rate and triglycerides in at-risk patients.”

This was back in 2011, but look at all it tells us. We know that hypertension is the number two cause of CKD. Moderating our blood pressure will (hopefully) slow down the progression of the decline of our kidney function. Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/High_Blood_Pressure_and_Kidney_Disease.php explains this succinctly:

“High blood pressure makes your heart work harder and, over time, can damage blood vessels throughout your body. If the blood vessels in your kidneys are damaged, they may stop removing wastes and extra fluid from your body. The extra fluid in your blood vessels may then raise blood pressure even more. It’s a dangerous cycle.”

And heart rate? The conclusion of a study published in the Journal of Nephrology reads:

“Heart rate is an independent age-dependent effect modifier for progression to kidney failure in CKD patients.”

You can read the entire study at https://www.researchgate.net/publication/232714804_Heart_rate_age_and_the_risk_of_progression_to_kidney_failure_in_patients_with_CKD.

Then there are triglycerides. I included this information from the American Kidney Fund in SlowItDownCKD 2012.

“Your triglycerides are also important. People with high triglycerides are more at risk for kidney disease, heart disease and stroke.”

I am convinced. I will be one of those who continues taking my fish oil supplements to get in that omega-3 which is going to help me with inflammation which – in turn – will help me slow down the progression in the decline of my kidney function. How about you?

We’re going to do this a little differently this time. To celebrate the publication of SlowItDownCKD 2017, the first person who hasn’t won a book giveaway yet and can correctly tell me if my new grandchild is a boy or a girl will win a copy of Portal in Time. I hope you like time travel romances.

Until next week,

Keep living your life!

Part Two of the Two Parter for National Kidney Month

Are you ready for the most important sentence in the mytherapyapp.com guest blog which was published on World Kidney Day on March 8th? This was the day that celebrated Chronic Kidney Disease and Women’s Health – during March’s National Kidney Month and National Women’s Month. Well then, here it is, along with the rest of the mytherapyapp.com guest blog.

Let me be clear: you must have functioning kidneys or dialysis or a transplant to live.

When there’s nothing doing the jobs of the kidneys, there’s no life. Your kidneys filter about 200 quarts of your blood each day. They are the organs that prevent toxic build up in your body by turning these toxins – along with other waste products – into urine. They are responsible for regulating your electrolytes and your blood pressure. These are only three of the many necessary jobs they do.

That would explain why hypertension, also called high blood pressure, is the second leading cause of CKD. Sometimes what is commonly considered medication for hypertension is prescribed for CKD whether or not you have high blood pressure.

The Simple Tests That Could Save Your Life

I’m originally from New York. Do you remember the old lottery advertising slogan from NY, You’ve got to be in it to win it? The same is true here. If you don’t know you have CKD, you won’t be treating it.

You’ll probably feel the needle for the blood test, but that’s a very, very small price to pay for discovering CKD. I have no idea how long I had it before my diagnosis. I could have gone not knowing until I reached end stage which would mean dialysis to perform the jobs my kidneys couldn’t, or a transplant, or… my demise.

The treatment is nothing horrendous. It depends upon your body chemistry (your Comprehensive Metabolic Panel – a blood test – will give you a good picture of that) and your nephrologist’s suggestions. Usually, it’s the hypertension medication mentioned above, a special diet, treating diabetes if you have it, exercise, adequate sleep, and avoiding stress where you can. You can live with that, can’t you? Especially if it means your life.

When I was teaching Essay Writing on the college level, it was a rule never to end your essay with the words, “In conclusion.” But I also taught that you needed to learn the rules, so you could break them.

So… in conclusion, please, please go for the blood and urine tests.

You really don’t need the fatigue, brain fog, or bone problems undiagnosed CKD can cause, much less dialysis or a transplant. Catch the disease early, treat it, and keep living your life!

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We would like to thank Gail for contributing this post.
If you would like your story featured on the MyTherapy blog, contact Dan here.

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Since being diagnosed with chronic kidney disease, Gail has channeled her expertise in research writing to share information and support those in a similar situation to the one she was in over a decade ago. She is a serial author on CKD, and writes a blog, SlowItDownCKD.

What’s that? But National Kidney Month runs all of March. You’re right, which is why eCareDiary.com interviewed me on March 6th.

Coping with Chronic Kidney Disease

eCareDiary spoke to Gail Rae-Garwood, author of three time award winning blog, SlowItDownCKD about how she discovered she had chronic kidney disease and steps she’s taken to maintain the level of kidney function.  

This is the link: https://www.ecarediary.com/CommentRadioShow.aspx?id=1238. You’ll also find the show embedded on my website: www.gail-raegarwood.com.  Did the interview prompt any questions about CKD for you? Ask them at https://www.ecarediary.com/ExpertQA.aspx. I’ll be the expert answering them. I have to admit, it’s still hard for me to own being an expert, a lay expert, that is. I was simply a CKD patient with lots of questions, the wherewithal to answer them, and a great desire to share what I’d learned so that no one else was as terrified at their CKD diagnose as I was.

 

The National Kidney Foundation has a  free testing program. This is the information from their website. The Find a KEEP Healthy Event in your area link if live.

DO YOU NEED A KIDNEY HEALTH CHECK?

 

Come to the National Kidney Foundation’s new KEEP Healthy program and find out. One in three Americans is at risk for developing kidney disease. KEEP Healthy will help you learn if you’re the one.

Find a KEEP Healthy Event in your area 

What is KEEP Healthy?

The National Kidney Foundation’s community-based initiative to educate about the kidneys, risk factors for kidney disease, and steps to take to keep kidneys healthy and reduce risk.

What does the KEEP Healthy Check-up Include?

• Risk Survey
• Body Mass Index (BMI): Height and Weight Measurements
• Blood pressure check
• ACR urine test for albumin (a type of protein) – For individuals at risk only!
• Free educational materials
• Opportunity to speak with a health care professional

Who’s at Increased Risk for Kidney Disease?

• Anyone with high blood pressure, diabetes
• Anyone with a family history of kidney failure
• African-Americans, Hispanics, Asians, Pacific Islanders and American Indians
• Anyone age 60 and older
• Individuals who are obese (body mass index of 30 or above)

What should you do next?

• When you visit your doctor, share what you’ve learned about your risk factors for kidney disease
• Follow healthy lifestyle advice
• If you have any questions, call our NKF Cares patient hotline toll-free at 1-855-NKF-Cares (653-2273).

Locally, the Kidney Foundation of Arizona provides a similar service with a screening coming up this Saturday. By the way, the Register Online link is live:

PATH TO WELLNESS SCREENING

Saturday March 24th, 2018

Free Public Health Screenings

Next Path to Wellness Screening:
Saturday, March 24, 2018
South Phoenix Missionary Baptist Church | 2006 E. Broadway Rd. Phoenix, AZ 85040

REGISTER ONLINE

HACER UNA CITA

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

Path to Wellness screenings provide free blood and urine testing, which is evaluated onsite is using point-of-care testing devices to assess the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

For more information, call our main line at: (602) 840-1644. To volunteer for a Path to Wellness event, please contact James Ivie, Director of Patient Services, at jivie@azkidney.org.

Until next week (when it will still be National Kidney Month),

Keep living your life!

The Constant Student

Last week, I was excited about a new word and, boy oh boy, did I learn even more about gastroparesis after my blog was posted on Facebook Kidney Disease Support Pages. This week, it’s a new test that a reader asked me about: the Iothalamate clearance test.

This is what the University of Washington at http://www.uwmedicine.org/health-library/Pages/iothalamate-scan.aspx had to say about the test:

“An Iothalamate study is a diagnostic nuclear medicine procedure used to find out your glomerular filtration rate (GFR) for each kidney….

How Does It Work?

A small amount of a radioactive material, called radiotracer, is injected into the muscle of your upper arm. This material is excreted out of your blood, into your urine, by glomerular filtration. By taking samples of your blood and urine over time, we are able to calculate what your GFR is. This gives your doctor information about the health of your kidneys.

How Do I Prepare?

• Drink 20 ml of water per kilogram of body weight in the 90 minutes before arriving in the department. For most people, this is about 1 to 2 1-liter bottles of water.
• Drink lots of fluids throughout the 4-hour study. The study may be continued for more time if more urine is needed.
• You need to be able to empty your bladder completely.
• Most patients are required to withhold diuretics the day of the test. Check with your doctor if you take diuretics.
• Do not consume any caffeine the morning of the study.

How is the study performed?

1. When you arrive at the lab, the technologist will check your blood pressure. You will need to completely empty your bladder into a container. The technologist will also place an IV into one of your veins and take a sample of your blood.
2. The radioactive tracer will be injected into your upper arm muscle. The technologist will take another blood pressure reading about 10 minutes later.
3. You will return every hour, for 4 hours. Each hour, the technologist will take a blood sample and ask you to completely empty your bladder into a container. It is very important that you do not go to the bathroom outside of the department.
4. Throughout the study, you will be required to drink plenty of fluids, and avoid caffeine. You will be allowed to eat.
5. After 5 urine and blood samples are collected, the IV will be removed and you are free to leave. This urine will be analyzed and measured.

What will I feel during the study?

Most people feel no different than normal during this study. Some people may feel a little shaky after the injection of the radiotracer. This is because a small amount of epinephrine is added to the radiotracer to improve its absorption. You may also have minor discomfort from holding your bladder….

Whoa, baby! Nuclear medicine? Radioactive material? Epinephrine? I understood why no diuretics, but why no caffeine? Any why was there an IV?

I know, I know. Start slowly. According to RadiologyInfo at https://www.radiologyinfo.org/en/info.cfm?pg=gennuclear,

“​Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose and determine the severity of or treat a variety of diseases, including many types of cancers, heart disease, gastrointestinal, endocrine, neurological disorders and other abnormalities within the body. Because nuclear medicine procedures are able to pinpoint molecular activity within the body, they offer the potential to identify disease in its earliest stages as well as a patient’s immediate response to therapeutic interventions.”

Okay, got it. And radioactive?  MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=11952 defines the word this way:

“Radioactive: Emitting energy waves due to decaying atomic nuclei. Radioactive substances are used in medicine as tracers for diagnosis and in treatment to kill cancerous cells.”

As a side note, as far as I could tell this test is not used on pregnant women or those who are breastfeeding since a radioactive substance is involved.

I couldn’t decide if I was feeling better or worse about nuclear medicine to diagnose Chronic Kidney Disease. So I looked… and looked…and looked again before I realized it’s contrast dye that may cause injury in those with CKD, not radioactive material. No wonder some nephrologists have no compunction about ordering this test. By the way, radioactive exposure in this test is less than that in a CT scan.

Hmmm, epinephrine sounds familiar. Of course! My buddy back East carries an epi pen just in case she’s stung by a bee. Epinephrine is also known as adrenaline. Ah, so adrenaline “is added to the radiotracer to improve its absorption.” Makes sense.

Now that we know that epinephrine is adrenaline, we can easily understand why no caffeine. Remember that song, “Fly Me to the Moon”? Between the adrenaline and the caffeine, you’d be flying yourself to the moon.

What also makes sense is no diuretics. You wouldn’t want to be urinating more than necessary if your urine is being evaluated. That might dilute the very small amount of radioactive material that was injected into the muscle of your arm.

So, what’s the IV for you ask.  That’s how the radiotracer is injected and/or how the blood samples are obtained. I know I’d rather have one IV instead of four or five needle sticks for individual blood draws. Apparently, there are variations in how the test is administered.

 

Now the biggie: Why use this test at all? This is from the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“GFR: Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

The Iothalamate clearance test is a measured GRF test. It doesn’t estimate, but actually measures your GFR, sort of like real time videos are not replays but live. Your doctor may doubt the results of your eGFR, the routine test, due to your serum creatinine output or some other variable. Age, race, gender, and muscle mass all affect the eGFR. The Iothalamate clearance test will give him an accurate measurement of your GFR so he will know not only what stage of CKD you are in, but how to treat it.

I hope this is helpful to the reader who asked.

Until next week,

Keep living your life!

Shocked

When I checked my phone messages this morning, I saw one from the wife of someone I have known and loved my whole life. That shook me. The message was from his wife, not him. I couldn’t bring myself to listen to it until after I’d had a cup of coffee and fed Shiloh, our dog.

It was bad news. He was in the hospital on life support. I was shocked. Immediately, I felt nausea and a band started to tighten around my head. I noticed my voice was rough as I tried to process what his wife was telling me.

She did an exemplary job of explaining what had happened step by step and including what will happen at the hospital now. After reassuring myself that she had friends around her to support her while she’s emergency central, so to speak, we hung up…and I tried to go through my usual early morning routines.

I knew it wasn’t working when I took the wash out of washing machine, put it back in the washing machine, and started the empty dryer. I knew it wasn’t working when I fed the dog I’d just fed.

So I retreated to the library to start the daily ‘kidney work’: checking email, texts, and LinkedIn for messages from readers; posting on Instagram and Facebook; and perusing Twitter for articles that might interest you. I was having trouble concentrating. Maybe thinking about what I’d write in today’s blog would be more productive.

It was obvious, wasn’t it? I’d write about what shock does to your body and to your kidneys.

In befuddedly casting around on the internet for information, I found this at http://www.harleytherapy.co.uk/counselling/7-warning-signs-acute-stress-reaction-emotional-shock.htm.

By Harley Therapy January 23, 2014 Anxiety & stress, Counselling  

…. While it’s true you aren’t in “medical shock” – an acute circulatory condition where blood pressure falls so severely that multiple organ failure can occur – you are still in a medically recognised kind of shock.

Psychological shock, a form of psychological trauma, is the body’s very real stress response to experiencing or witnessing an overwhelming and/or frightening event….

You might feel as if your brain has turned to mush, or you have ‘brain fog’….

Life might even feel unreal, as if you are disconnected, floating slightly outside of your body and watching yourself carry on doing things. This is called dissociation….

When your brain decides that there is ‘danger’ around, it triggers the primal ‘fight, flight, or flight’ response. Back when we were ‘cave people’ these responses where helpful, but nowadays the overload of adrenaline they involve just leave you with a racing heartbeat, muscle tension, headaches, stomach upset, and random aches and pains….

Sleep is often affected by emotional shock. Insomnia is common. Even if you are sleeping more than ever, you are unlikely to get quality sleep but might suffer disturbed sleep, full of stress dreams. It’s common to develop ‘night panic attacks’ where you wake up suddenly with a racing heart and severe anxiety….

I could identify with this. It seemed I had to correct the spelling of every other word today. My husband was trying to pin down dates for a California trip and I was responding with dates for a New York trip. The doorbell rang, so I answered the phone. You get the idea. I’ve already mentioned the particular headache and the nausea. But what about my kidneys? What was happening to them?

The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/shock+organs, defines shock as “a sudden disturbance of mental equilibrium.” That is a pretty accurate description of what happened when I returned that phone call this morning.

The same site goes on to explain that shock “is associated with a dangerously low blood pressure.” And blood pressure, of course is:

pressure that is exerted by the blood upon the walls of the blood vessels and especially arteries and that varies with the muscular efficiency of the heart, the blood volume and viscosity, the age and health of the individual, and the state of the vascular wall

Thank you to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/blood%20pressure for that definition.

Notice the word “arteries.” Arteries also run into the kidneys. The following is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries. This is where the blood from the renal artery is filtered.

In other words, when you’re in shock – even if it’s emotional shock – the pressure of your blood can be dangerously low. But low blood pressure may also lead to Acute Kidney Injury (AKI). Uh-oh, I remember writing about that in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

….Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease…. Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times. Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times.

Let me make sure you (and I) understand that this is the worst case scenario. A few thoughts about how cardiovascular disease and the kidneys interact before I get on the phone to check on my beloved friend again. This is from a study that was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

“The brain and kidney are both organs that are affected by the cardiovascular systems,” said the study’s lead author, Adam Davey, associate professor of public health in Temple’s College of Health Professions and Social Work. “They are both affected by things like blood pressure and hypertension, so it is natural to expect that changes in one organ are going to be linked with changes in another.”

You can find the article at http://www.EurekAlert!.org/pub_releases/2012-11/tu-dkf111312.php

Until next week,
Keep living your life!

The Other Side of the Coin

Here’s hoping everyone had a wonderful Father’s Day. During our relaxed celebration for Bear, I found myself ruminating about how many times we’ve celebrated this holiday for fathers no longer with us and how many more times  we would be able to celebrate it for the fathers who are. They are aging. Wait a minute, that means their kidneys are aging, too.

Yep, that meant a new blog topic. We already know that kidney function declines with age. According to the National Kidney Foundation at https://www.kidney.org/blog/ask-doctor/what-age-do-kidneys-decline-function, “The general ‘Rule of Thumb’ is that kidney function begins to decline at age 40 and declines at a rate of about 1% per year beyond age forty. Rates may differ in different individuals.” 40?

Well, what is a perfect kidney function score… if such exists? Back  to the NKF, although they call this a ‘normal’ not ‘perfect’ GFR, this time at https://www.kidney.org/atoz/content/gfr:

In adults, the normal GFR number is more than 90. GFR declines with age, even in people without kidney disease.
Average estimated GFR
20–29     116
30–39     107
40–49     99
50–59     93
60–69     85
70+         75

Got it. So even for a normal 70+ person, I have CKD with my 50ish GFR.

It seems I’m getting a bit ahead of myself here. I haven’t defined GFR yet. Let’s take a gander at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for that definition,

“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

No, that won’t do. I think we need more of an explanation. This is from SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through  the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.”

Okay, I think that’s clear now. However, that’s not what I wanted to know. This is – if kidney function already declines with age, does having CKD age us more quickly?

“Premature aging is a process associated with a progressive accumulation of deleterious changes over time, an impairment of physiologic functions, and an increase in the risk of disease and death. Regardless of genetic background, aging can be accelerated by the lifestyle choices and environmental conditions to which our genes are exposed. Chronic kidney disease is a common condition that promotes cellular senescence and premature aging through toxic alterations in the internal milieu. This occurs through several mechanisms, including DNA and mitochondria damage, increased reactive oxygen species generation, persistent inflammation, stem cell exhaustion, phosphate toxicity, decreased klotho expression, and telomere attrition….”

You can read the entire fascinating (to my way of thinking) American Journal of Kidney Disease article at http://www.natap.org/2013/HIV/PIIS0272638612015922.pdf.

Nature.com at http://www.nature.com/nrneph/journal/v10/n12/full/nrneph.2014.185.html seems to agree that CKD accelerates aging:

“Chronic kidney disease (CKD) shares many phenotypic similarities with other chronic diseases, including heart failure, chronic obstructive pulmonary disease, HIV infection and rheumatoid arthritis. The most apparent similarity is premature ageing, involving accelerated vascular disease and muscle wasting. We propose that in addition to a sedentary lifestyle and psychosocial and socioeconomic determinants, four major disease-induced mechanisms underlie premature ageing in CKD: an increase in allostatic load, activation of the ‘stress resistance response’, activation of age-promoting mechanisms and impairment of anti-ageing pathways. The most effective current interventions to modulate premature ageing—treatment of the underlying disease, optimal nutrition, correction of the internal environment and exercise training—reduce systemic inflammation and oxidative stress and induce muscle anabolism. Deeper mechanistic insight into the phenomena of premature ageing as well as early diagnosis of CKD might improve the application and efficacy of these interventions and provide novel leads to combat muscle wasting and vascular impairment in chronic diseases.”

Remember the friend of my daughter’s who hadn’t seen me in five years who (thought) he whispered to her, “Your mom got so old.” Now I understand why, although I have noticed this myself. I look in the mirror and see the bags under my eyes that are not errant eye liner. I see the lines in my faces, especially around my mouth, that weren’t there just a year ago. I see the stubborn fat around my middle that frustrates me no end. I see that it takes me forever (okay, so I’m being figurative here, folks) to recover from the flu, and I see how easily I become – and stay – tired. The dancer in me screams, “No fair!” The adult patient in me says, “Deal with it,” so I do.

I’ve used quite a bit of advanced terminology today, but haven’t explained a great deal of it in the hopes that when you read these articles their meanings will become clear in context. If they don’t, please leave me a comment and I will explore each one of them in future blogs. Who knows? Maybe I’ll need to devote an entire blog to whichever term it is you’d like to know more about.

Don’t let our premature aging get you down. We can work against it and, hopefully, slow it down just as we do with the progress of the decline in our kidney function.

I have been saving this bit of news for the last item in today’s blog. The world is not going to suffer if it doesn’t know about my photography, my teaching ,writing, or acting careers. But, when it comes to CKD, my writing can add something for those 31 million people who have it…especially the 90% that haven’t been diagnosed yet. What I did was completely change my web site so that it deals only with my Chronic Kidney Disease Awareness Advocacy (It’s all caps because that’s the way I think of it.) under the umbrella of SlowItDownCKD. I have to admit, I was surprised to see how active I’ve been in the last decade. It’s different when you see your work listed all in one place. Take a look at www.gail-raegarwood.com and tell me what you think, would you?

Until next week,

Keep living your life!

 

 

Getting Juiced

I have the gentlest nephrologist in the world! Well, I think so anyway. He has been cautioning me about my weight for years. Yes, there it is again: my weight. Here I was finally coming to terms with being a chubby since nothing I was doing seemed to work to lose the weight. That’s when he tossed out a bombshell.

We all know that increased weight can raise your blood pressure which, in turn, negatively affects your kidneys. I was so pleased with myself for having raised my GFR another three points on my last blood test that I didn’t understand how I could be leaking protein into my urine at the same time. Wasn’t protein in the urine simply an indication that you have Chronic Kidney Disease? Didn’t I already know that? So why was protein leaking into my urine to the tune of 252 mg. when the norm was between 15-220 mg?

I know, I know: back up a bit. Thanks for the reminder. GFR is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“GFR: Glomerular filtration rate [if there is a lower case ‘e’ before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Oh, and just in case you’ve forgotten, this excerpt from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is a good reminder about the stages of CKD.

“Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts. The higher the stage, the worse your kidney function.

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

 STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist [Kidney specialist]. You’ll need a renal [Kidney] dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis [Artificial cleansing of your blood]. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita for refreshing my memory about each stage.”

Okay, back to the connection between spilling protein into your urine (called proteinuria) and CKD. This is from the recently published SlowItDownCKD 2016:

“In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

‘High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.’”

Let’s say you don’t have pre-diabetes, but do have CKD. Does proteinuria still make it worse? Damn! It does. This explanation is from SlowItDownCKD 2015:

“The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

‘A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin, that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity.’

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.”

I guess that explains why I magically developed a UTI after years of not having any.

I have gone so far afield from what I intended to write about on this last Monday of National Kidney Month. What was that, you ask? It was my nephrologist’s strong suggestions for immediate weight loss: juicing. I was so surprised.

After all that writing about eating the raw vegetables for roughage and sticking to only three specified amount servings of each daily, this expert in his field was telling me to ignore all that and throw myself into juicing for the immediate future. But you can bet I’ll try it; no way I’m throwing nine years of keeping my kidneys healthier and healthier out the window.

I can’t tell you if it works since I only started yesterday, but I can tell you it doesn’t taste bad. I’m learning how to use this fancy, dancy blender we got three years ago that had just been sitting on the shelf. Experimenting with the consistency has caused a mess here and there, but oh well.

My first juicing experience included kale, celery, lemons, cucumbers, and ginger. I definitely need to play with my combinations. I also think I made far too much. Luckily Bear was in the house and shouted out that the machine was making that noise because I didn’t add enough water. Water? You’re supposed to add water?

I’ll keep you posted on these experiments if you’ll get yourself tested for CKD. It’s just a blood and urine test. Fair deal?

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

Starting the New Year with a Miracle

Happy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at SlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written for the lay person, not the medical community. By the way, the National Kidney Foundation also has information about CKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

Medical Individuals

We all know I write about Chronic Kidney Disease, or CKD, but just what is that? When I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease six years ago, I defined CKD as “Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.” Although I’m not so sure about that “cannot be reversed” any more, this is simple, right?

Well, not exactly. Over the years, many readers have pointed out that they have another form of kidney disease. According to University Kidney Research Organization (UKRO) @ http://ukrocharity.org/kidney-disease/different-types-of-kidney-diseases/, these are all considered kidney disease:

• Alport Syndrome
• Diabetic Nephropathy
• Fabry Disease
• Focal Segmental Glomerulosclerosis
• Glomerulonephritis
• IgA Nephropathy (Berger’s Disease)
• Kidney Stones
• Minimal Change Disease
• Nephrotic Syndrome
• Polycystic Kidney Disease or PKD

Wait a minute. Chronic means of long duration. Then with the exception (hopefully) of kidney stones, these diseases can all be classified as CKD… but are they when it comes to treatment?

Dr. Joel Topf is a nephrologist who writes a blog of his own (Precious Bodily Fluids @pbfluids.com) and is a member of the eAJKD Advisory Board at American Journal of Kidney Disease. He must make great use of his time because he has helped develop teaching games for nephrology students and has written medical works. (Yeah, I’m impressed with him, too.)

He’s also a Twitter friend. He contacted me the other day about an article in the Clinical Journal of the American Society of Nephrology entitled “The CKD Classification System in the Precision Medicine Era,” which was written by Yoshio N. Hall and Jonathan Himmelfarb. You can read it for yourself on their site, but you’ll need to join it and get yourself a user name and password. I didn’t. Joel sent me the copy I needed.

My first reaction to his request was, “Sure!” Then I read the article and wondered if I could handle all the medicalese in it. Several readings later, I see why he asked me to write about it.

I say I have CKD stage 3B. You understand what I mean. So does my nephrologist. That’s due to the KDOQI. As I explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, this is The National Kidney Foundation Kidney Disease Outcomes Quality Initiative which was not put into place until 1997 and then updated only five years later in 2002. It introduced stages and put CKD on the world medical map. By the way, the 2012 revised guidelines helped raised awareness of CKD according to the CJASN article: “…from 4.7% to 9.2% among persons with CKD stages 3 and 4 in the United States ….”

But something is missing. How can my stage 3 CKD be the same for someone who has, say, Nephrotic Syndrome? We may have the same GFR, but are our symptoms the same? Is the progression of our illnesses the same? What about our treatment? Our other test results?

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.”

I know, I know, I didn’t explain what “the Precision Medicine Era” is, either. According to the article, “The underlying concept behind the Precision Medicine Initiative is that disease prevention and treatment strategies must take individual variability into account.” Actually, President Obama first used the term in his State of the Union Address last year.

Alrighty now, back to why CKD staging is not necessarily precision medicine. It seems to center on one phrase – individual variability. I was diagnosed at age 60. I’m now almost 70. Where is the age adjustment in my treatment plan? Is there one? What about when I’m 80? 90? We know the body reacts differently to medications as we age. Is my nephrologist taking this into account? Is yours? I’m taking liberties with the definition of individual here; I don’t think the authors meant within the individual, but rather amongst individuals.

I check my husband’s blood test results for his GFR. FOR HIS AGE, he does not have CKD. But here’s another point I’ve been ranting about that’s brought up in this article. Many elders (Oh my! We’re in that category already.) are not being told if they have stage 1 or stage 2 CKD because their doctors age adjust and so don’t consider the results CKD. We’re getting a little esoteric here. Is CKD really CKD if you’ve age adjusted your GFR readings?

My brain is starting to hurt and I haven’t even written about the different diseases yet, although I did allude to them earlier. What impressed me most in this article is this (in discussing four different hypothetical patients): “Each would be classified as having stage 3 CKD with approximately the same eGFR, but it is patently obvious that virtually every aspect of clinical decision making … would greatly differ in caring for these four individuals.”

I have to agree in my layman way. I’m not a doctor, but I know that if you have Polycystic Kidney Disease and I don’t, although our GFR is the same, I cannot receive the same treatment you do and you cannot receive the same treatment I do. Yes, they’re both kidney diseases and both chronic, but they are not the same disease despite our having the same GFR.

There is no one size fits all here. Nor does there yet seem to be precision. My CKD at 70 is not the same as it was at 60. If I had diabetes, my CKD treatment would be different, too.  I do have hypertension and that has already changed my CKD treatment.

This got me to thinking. How would every nephrologist find the time for this individualized treatment for each CKD patient? And what other tests will each patient need to determine treatment based on his/her UNIQUE form of CKD?

Thanks for the suggestion, Dr. Topf. This was worth writing about.

Until next week,

Keep living your life!

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and you can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to her home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, and phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” 

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

Carbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70^th birthday cruise to Cuba for Bear and me, conferred many times by phone and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,

Keep living your life!

How Sweet It Was

I’ve had an interesting turn around in my health this last week of National Kidney Month. You did know it’s still National Kidney Month, right?  You did go get yourself tested for Chronic Kidney Disease, didn’t you? Hurry up! There’re only four more days left to National Kidney Month. You know I’m joking about this month being the time to get yourself tested, but I’m serious (unfortunately, sometimes dead serious) about getting yourself tested.

I know, I know, I’m preaching to the choir. But how many of you have told your friends, neighbors, family, and co-workers about just how simple – and important – these tests are. Let’s not let them become one of the 31 million with Chronic Kidney Disease or worse, one of those that don’t know they have it.

Excuse me while I step off my soap opera. Now, where was I? Oh, yes, the – ahem – interesting turn around in my health this month.

Okay, this is twofold. The first part is the weight. You think I’ve been having trouble keeping that in check since I started blogging four years ago, don’t you? I mean because I write about it so much. The truth is it’s been much, much longer than that.  Even way back in college when I was a size 7 for one day, I weighed more than ‘the charts’ said I should by 20 pounds or so. I looked good, I felt good, and my mom kept telling me I had ‘heavy bones,’ so I let it go.  Who knew any better back then?

What’s so bad about the extra weight you ask? You do know obesity is one of the causes of CKD, don’t you? Don’t feel bad if you didn’t. I didn’t. I just started noticing it showing up in the research in the last couple of years. That doesn’t mean it wasn’t there. It just means I never saw it if it was.

I mentioned weight in passing a few times in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is from my first nephrologist’s report:

“The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function.”

Better blood pressure and renal function? That’s when my battle with the numbers became real. And that’s when weighing and measuring food according to the renal diet allotments worked for a while… until I thought I could eye measure. So I went back to weighing and measuring… and it worked…until bomb shell number two fell in my lap: pre-diabetes.

In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.”

Let’s backtrack just a bit here. What does high blood glucose have to do with this? Well, that’s what tested to measure your A1C, which determines whether or not you have diabetes… or even pre-diabetes.

Back to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2 this time, in which I decry my A1C woes:

“This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement.

When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.”

What I learned from my primary care physician on my last visit is that the A1C is not the only measure of diabetes. Although my blood glucose readings are still in the pre-diabetes range according to the A1C, my daily readings have sometimes gone over the 126 that’s considered diabetes. My head is spinning here. No one ever mentioned that magic number to me before.

I decided to conduct a little experiment last night. We know that high blood glucose is the result of sugar, but did you know that most carbohydrates turn into sugar? Last night I ate a chocolate bar and devoured at least half a dozen Saltines. This morning, when I pricked my finger and tested the blood, the reading was 129. Damn! Someone had to be the guinea pig and I volunteered myself… but all I’d proven was that sugar and carbs raise your blood sugar pretty quickly.

Now here’s the kicker. This is from SlowItDownCKD 2015 which is presently available digitally and should be out in print later this week:

“The Brits do a masterful job of explaining this effectively.  The following is from Patient.

‘A raised blood sugar (glucose) level that occurs in people with diabetes can cause a rise in the level of some chemicals within the kidney. These chemicals tend to make the glomeruli (Me here inserting my two cents: what filters the blood in your kidneys) more ‘leaky’ which then allows albumin to leak into the urine. In addition, the raised blood glucose level may cause some proteins in the glomeruli to link together. These ‘cross-linked’ proteins can trigger a localised scarring process. This scarring process in the glomeruli is called glomerulosclerosis. It usually takes several years for glomerulosclerosis to develop and it only happens in some people with diabetes.’”

My nephrologist told me to cut out sugar and carbs to lose weight. I’d already cut out sugar, so I cut out (or at least drastically down on) carbs. The result: a very slow weight loss. Of course, this is new to me so I don’t know if that two pound weight loss in a month will continue every month, but I’m willing to give it a try. Say, that’ll have a possible effect on eliminating the diabetes, too!

Until next week,

Keep living your life!

Renal Sally Port

Sometimes things just pop into a writer’s head for no reason at all. The title of this week’s blog did that over and over again. Okay, I thought, I’ll go with it.  Only one problem: I didn’t know what a sally port was and why I should be writing about a renal one.

Hmmmm, I did marry a military man. I asked. He explained but I wanted to see it in writing. Hence, this definition from The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/sally%20port:

1:  a gate or passage in a fortified place for use by troops making a sortie

2:  a secure entryway (as at a prison) that consists of a series of doors or gates

Oh, now I got it. I immediately thought of Fort Wadsworth on Staten Island where I took my little children to Civil War reenactments. There were scary, dank areas between the port and the base which were enclosed between large old gates at either end. No sun got in and it echoed in there. It was a place of fascination and fear for my little ones. What did that have to do with our kidneys?

Then I thought of having visited the friend I’d written about in the hospital when his bipolar medications needed immediate adjustment. One door was unlocked for me, I entered. That door was relocked behind me and another unlocked in front of me. That was a sally port, too.

Our gaggle of grown children has told us enough about ‘Orange is the New Black’ that our interest was piqued. Then Bear read my Hunter College Alumni News Letter and saw that Dascha Polanco – a major character in the series – also graduated from Hunter, although not exactly the same year I did. Those seemed like good enough reasons to give the series a try. It was set in a prison with a series of sally ports to enter or exit.

Now it was more than clear. A sally port is a security feature to guard entry and exit. Good, one half of the renal sally port secret revealed. Now, do our kidneys have sally ports?

This is the structure of your kidney. It’s clear there are three ways in or out of the kidney: the veins, the arteries, and the ureters. Let’s take a look at each to see which, if any, is a sally port.  

In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, it was explained that the renal (kidney) artery brings the unfiltered blood into the kidney:

“Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries.  This is where the blood from the renal artery is filtered.  The glomerulus is connected to a renal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.”

Well, what about the renal vein? Here’s how I explained it in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“If you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.”

Well, if the renal artery is the sally port for the blood entering your kidneys, the renal vein sounds like the more important renal sally port since it’s allowing that poorly filtered blood back into your blood stream.

Oh wait, we forgot the ureter.   There’s an explanation from the presently-being-published SlowItDownCKD 2015 about that.

Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following.

“A hollow organ in the lower abdomen that stores urine. The kidneys filter waste from the blood and produce urine, which enters the bladder through two tubes, called ureters. Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, passing through the prostate gland and then the penis. Also known as urinary bladder and vesical.”

Uh, no, there’s nothing in that description that indicates the urethra is a sally port.

So… the renal vein then.  How does this poor excuse for allowing filtered blood back into our blood stream affect us? (I do admit that it seems it’s more the fault of the damaged glomeruli than the renal vein acting as a sally port.)

For one thing, we become one of the one-in-three at risk for Chronic Kidney Disease … and that’s only in America. For another, our bodily functions differently as do our minds. I included this not-so-pleasing information from EurekAlert! in a 2012 post in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

Decreased kidney function leads to decreased cognitive functioning

“Decreased kidney function is associated with decreased cognitive functioning in areas such as global cognitive ability, abstract reasoning and verbal memory, according to a study led by Temple University. This is the first study describing change in multiple domains of cognitive functioning in order to determine which specific abilities are most affected in individuals with impaired renal function.”

But there’s more. According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/factsheets/FastFacts, this is what is our kidneys are NOT doing for us as well as they should since we have CKD:

• Regulate the body’s fluid levels
• Filter wastes and toxins from the blood
• Release a hormone that regulates blood pressure
• Activate Vitamin D to maintain healthy bones
• Release the hormone that directs production of red blood cells
• Keep blood minerals in balance (sodium, phosphorus, potassium)

I’m glad I got the term renal sally port out of my system, but I wish the news had been better.

Until next week,

Keep living your life!

Inked

There’s a woman I know, younger than I by three and a half decades, who is inked… and I mean inked. She has sleeves on both arms and (almost) a body suit.  Don’t know what I’m talking about? Take a look at http://www.inkedmag.com/tattoo-lingo/. Unfortunately she’s lost a job or two when narrow minded employers saw her arms, but that’s not what I’m writing about today.

Oh, all right. Here are the definitions of the jargon above: inked = tattooed; sleeve= fully tattooed on the arm; body suit= tattoos on the majority of the body.

I was thinking about her the other day and that got me to thinking about tattoos and whether or not they’re safe for us since we have Chronic Kidney Disease. Let’s take a look at the tattooing process itself to see if there’s anything there to worry about.

I turned to The Mayo Clinic at http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/tattoos-and-piercings/art-20045067 for this information.

“A tattoo is a permanent mark or design made on your skin with pigments inserted through pricks into the skin’s top layer. Typically, the tattoo artist uses a hand-held machine that acts much like a sewing machine, with one or more needles piercing the skin repeatedly. With every puncture, the needles insert tiny ink droplets.

The process — which is done without anesthetics — causes a small amount of bleeding and slight to potentially significant pain.”

Personally, I’m too much of a scaredy cat to give tattooing a try now that I know about the possibility of pain. There’s enough of that in my life already… like the endometrial biopsy a few months ago. Ugh! But maybe you’re not…

Well, why might you want a tattoo in the first place? Maybe it’s an artistic requirement for your soul.  Maybe it’s to remind yourself of some life lesson like my New York daughter, Nima’s. Or maybe it’s a medical tattoo to wear rather than a medical alert bracelet.

Hmmm, I’d think again. As CKD patients, our blood is already not that pure. Remember, as I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“The kidneys remove these toxins (e.g. from the blood) and change them into urine ….”

Our kidneys are not functioning at the top of their game. With my current GFR of 51, my kidneys are only functioning at a teeny bit more than half capacity while still trying to filter the blood as kidneys with a GFR of 100% would. Oh, right, GFR. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 that’s explained according to the NKDED:

“The National Kidney Disease Education Program at The U.S. Department of Health and Human Services provides the following information.

1. A blood test checks your GFR, which tells how well your kidneys are filtering. GFR stands for glomerular filtration rate. …”

Here’s what I found on Health Impact News at http://healthimpactnews.com/2015/think-before-you-ink-the-little-known-risks-of-tattoos/ that makes me so leery of tattoos.

“In 2011, a study in The British Journal of Dermatology revealed that nanoparticles are indeed found in tattoo inks, with black pigments containing the smallest particles (white pigments had the largest particles and colored pigments were in between).

Nanoparticles are ultramicroscopic in size, making them able to readily penetrate your skin and travel to underlying blood vessels and your bloodstream. Evidence suggests that some nanoparticles may induce toxic effects in your brain and cause nerve damage, and some may also be carcinogenic.”

Whenever I speak to someone who has a tattoo, they tell me the ink only goes as far as the dermis (the second layer of skin) and nowhere near the blood.  I often wondered about that since the dermis is rife with blood vessels. I guess I just learned that the tattoo owners were misinformed. And why we as CKD patients should not be allowing even the possibility of more toxins entering our blood streams for our already overworked kidneys to eliminate.

Are tattos pretty? I think so.  Are they spiritual? Sometimes they are. Are they worth the risk? It’s your decision, but I can’t agree that they are. I found even more evidence to the contrary on WebMd at http://www.webmd.com/skin-problems-and-treatments/laser-tattoo-removal?page=2

“There are minimal side effects to laser tattoo removal. However, you should consider these factors in your decision:

The tattoo removal site is at risk for infection. You may also risk lack of complete pigment removal, and there is a slight chance that the treatment can leave you with a permanent scar….”

I’d also read on various sites that simply being tattooed may leave you open for infection if the autoclave (instrument steaming machine) or needles are not clean enough. I don’t know of any sites to rate the cleanliness of tattoo parlors, but I do know infection opportunities are far more common for us as CKD patients…and they are more dangerous for us.

This paragraph from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 should clarify the why of avoiding infection possibilities.

“Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection, kidney function can be further reduced. The liver also filters toxins and drugs from the blood.”

I wondered if I’d find enough information for a blog about CKD patients and tattoos. On the contrary, I find I could go on and on.

Tuesday is the beginning of National Kidney Month. While I won’t be leading my team in the kidney walk this year (Damn neuropathy!), I’ve got another surprise up my sleeve to celebrate. I may be able to announce that next week.

Don’t forget about the National Kidney Fund of Arizona’s annual conference on March 11^th and 12^th. I’ll be there on the 11^th. You can register at www.SWNC.org.

Until next week,

Keep living your life!

Here, There, and Everywhere

We did it! This attempt at our delayed honeymoon was a real honeymoon… only one with my brothers and sisters-in-law which made it even better in my book. (Like that play on words?)

We couldn’t take a honeymoon right after we married because I got sick. Thank you so much compromised immune system for that. Then Bear had surgery that laid him up for a long, long, long time or so it seemed.

We finally planned our delayed honeymoon to Vancouver, British Columbia (Thanks for the help in planning that part, Denis Beaudry.) and Alaska. Thank you for the help in planning that part, Mark Rosen.

Bear always wanted to cruise the Inside Passage and ride the Alaska Railroad. I always wanted to see the B.C. distant family talked about. We got our wishes but couldn’t enjoy much of them due to Bear contracting cellulitis on the second day. That meant IVs and high fevers. Trash delayed honeymoon attempt #1.

But then, due to my sister-in-law’s generosity in inviting us to try a honeymoon again by joining my brother and her on their 48^th anniversary/her birthday cruise, we finally got our long awaited honeymoon. We’d been married 2 ½ years by this time.

To round out the fun, brother #2 and his wife decided to join us.  Although various combinations of us have been together throughout the years, the five of us hadn’t all been together in 27 years!!!!! Bear was the most welcomed newcomer to the family.

Royal Caribbean International did it up, well, royally. Of course, this was only my second cruise, but my family is cruiseophiles and they told me this was so. I took a writer’s liberty to make up a word here. It means lover of cruises. Feel free to steal it.

So, what does any of this have to do with Chronic Kidney Disease, you ask? We did go to three different countries, although there was only a limited shore excursion in each and we saw only what tourists see in each. (Here comes my favorite phrase.) That got me to thinking. I wondered what CKD treatment was like in each of these countries.

Our first port of call was Labadee, Haiti. I’m told this is a very dangerous area. The comedian onboard likened the tourist area to Jurassic Park in that it is totally fenced in to protect the tourists and keep out the local people.  Funny, the cruise line referred to it as ‘a private beach.’ I guess it’s all a matter of prospective.

We took a catamaran ride in order to see more than the ‘private beach’ allowed and were repeatedly cautioned not to leave the encampment that was the tourist attraction, other than these sanctioned boat rides.  That’s also where we learned there are no police there. But was there CKD treatment?

 

According to National Institutes of Health (in the background material of the abstract of a small study of CKD in the rural areas of Haiti):

In the Caribbean region chronic kidney disease (CKD) is an increasing challenge. High rates of non-communicable and infectious diseases and the rise in people suffering from diabetes and hypertension explain the observed and further expected increase of CKD. However, data about the magnitude of the problem are rare and in some countries such as Haiti completely lacking.

You can read a little bit more at http://www.ncbi.nlm.nih.gov/pubmed/25535765

So what data might there be? I did find a blog about another small study at http://blog.smw.ch/chronic-kidney-disease-in-a-rural-region-of-haiti/. However, this contained cautions about the population of the study and the fact that – again – only one rural region was studied. They did have some interesting, although not surprising, results.

CKD was found in 27% of the study population. Risk factors independently associated with CKD were: hypertension, HIV infection and age >60 yr.

What makes it worse is that Haiti has 80% unemployment and very few people have health insurance.

Maybe our next port of call, Falmouth in Jamaica, was more involved with CKD.

I went to http://www.worldlifeexpectancy.com/jamaica-kidney-disease for the following information.

According to the latest WHO [Reminder: that’s the World Health Organization.] data published in may (sic) 2014 Kidney Disease Deaths in Jamaica reached 550 or 3.08% of total deaths. The age adjusted Death Rate is 20.00 per 100,000 of population ranks Jamaica #37 in the world.

CKD is the ninth leading cause of death in Jamaica. It’s the eighth leading cause of death here in the United States. It’s a teeny country; ours is not. Draw your own conclusions.

Although we were again warned not to wander off by ourselves since this was also considered a dangerous country, we were able to tour a 1700s plantation. Just as Haiti, it was absolutely beautiful, but again – we saw only a few roads and what we were allowed to see. One of my brothers and his wife took a walking food tour and were appalled at how poorly the inhabitants of the country lived. Remember, we were only tourists formulating opinions on our quick view of each of these countries.

I was quite taken with the direct approach of The West Indian Medical Journal’s assessment of CKD in the Caribbean, although they do not especially mention Jamaica.

There are not enough nephrologists in Caribbean countries and some countries may lack a nephrology service. Coordinating patient care between specialist and primary care physicians is essential in managing the burden of this growing disease.

You can read more at http://caribbean.scielo.org/scielo.php?script=sci_arttext&pid=S0043-31442011000400017

The only other information I could find was from 1999. I felt 16 years was a long time ago, too long to include that information here.

My conclusion is that these developing countries are well aware of the increasing incidence of CKD among their population, why it’s there, and how much of a financial burden it represents. You need to remember that both countries have a predominantly black population (although there’s been plenty of intermarriage) which historically has a higher incidence of hypertension, one of the leading causes of CKD.

Oh boy, looks like we’ll have to leave our last port of call – Cozumel in Mexico – until next week.

Until next week,

Keep living your life!

They’re Not Two Separate Things

I know someone who is mentally ill.  You do, too, although you may not be aware of it. PTSD, bipolar, personality disorder, poor impulse control, schizophrenia, depression, anxiety disorders, obsessive-compulsion, even eating disorders. I could go on and on with diagnoses we know nothing about when we meet the person. (Well, maybe we would with an eating disorder.) And why should we?

With medication, this person can function in the world… and function well. For those of you who are successfully treating your psychiatric illness holistically, whatever it is you are taking or doing that works for you will be included in the category of medication for the purposes of this blog.

But what if the person is not taking the medication necessary? What if they’re not and they have CKD? What if they are and have CKD? How does that affect their kidneys?

I came across a 2002 grant proposal on the National Institutes of Health site at http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-02-009.html which made clear that there is a correlation.

“There is substantial evidence that severe chronic illness may be associated with and exacerbated by co-existent mental disorders such as depression, anxiety disorders, schizophrenia, and eating disorders.  Nonetheless, few studies have addressed the natural history and consequences of co-existent mental disorders on chronic diseases of interest to the NIDDK, such as diabetes mellitus, chronic renal disease and obesity and eating disorders.”

The person I know has two parents with CKD. That means he has to be extra vigilant about preventing CKD. But can he with the impulsive, irrational thinking he occasionally experiences?

One of the many complications of Chronic Kidney Disease according to The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/complications/con-20026778 is

“Damage to your central nervous system, which can cause difficulty concentrating, personality changes or seizures”

Difficulty concentrating.  Personality changes. Just as in mental illness.

Let me talk about that term a bit. By mental illness, I mean a psychiatric condition rather than a physical one, but one that requires daily treatment, just as diabetes or CKD does. You watch your diet, don’t you? And try to stay away from stress? There’s another kind of daily attention psychiatric patients need to adhere to.

And here’s where it gets muddled. Just as CKD, a physical condition, can cause mental problems, a psychiatric condition can cause physical conditions.  The two are wrapped up in each other. You can’t divorce the physical from the mental or vice-versa. You are one person with all these interrelated parts.

Mental illness is far more prevalent than you think… and that’s with its being ‘out of the closet,’ so to speak, in recent years. The Centers for Disease Control’s Fact Sheet about mental health surveillance at http://www.cdc.gov/mentalhealthsurveillance/fact_sheet.html  contains the following statement.

“According to the World Health Organization, mental illness results in more disability in developed countries than any other group of illnesses, including cancer and heart disease. Other published studies report that about 25% of all U.S. adults have a mental illness and that nearly 50% of U.S. adults will develop at least one mental illness during their lifetime.”

Let me make it worse.  This was in 2002, 13 years ago.

In 2012, the CDC had this to say about mental illness and chronic disease:

“One common finding is that people who suffer from a chronic disease are more likely to also suffer from depression. Scientists have yet to determine if having a chronic disease increases the prevalence of depression or depression increases the risk of obtaining a chronic disease.”

This is from a study about chronic disease and mental health in the workplace. You can read more about that at http://www.cdc.gov/nationalhealthyworksite/docs/Issue-Brief-No-2-Mental-Health-and-Chronic-Disease.pdf

I know little about medications for mental illness except for those prescribed for my friend.  As an example of how drugs for psychiatric conditions may or may not interact with your physical ailments, let’s talk a bit about his drugs.

When my bipolar friend has a manic episode, an anti-psychotic – Zyprexa (generic name Olanzapine) – is prescribed. WebMD at http://www.webmd.com/drugs/2/drug-1699/zyprexa-oral/details# tells us

“This medication can help to decrease hallucinations and help you to think more clearly and positively about yourself, feel less agitated, and take a more active part in everyday life.”

Okay, sometimes my friend needs that, but there are also things he doesn’t need.

“This drug may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Tell your doctor immediately if you develop symptoms of high blood sugar, such as increased thirst and urination. If you already have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication, exercise program, or diet.

This drug may also cause significant weight gain and a rise in your blood cholesterol (or triglyceride) levels…. These effects, along with diabetes, may increase your risk for developing heart disease. “

Not so great for someone that has two parents with CKD, one with CKD caused by diabetes. As for the cholesterol or triglyceride levels,  we could be getting pretty close to heart disease here, as mentioned above. Nothing about the kidneys, yet diabetes is the leading cause of CKD.

What else was he recently prescribed? Oh, yes, lithium.  He’s been taking that off and on since he was 14 and first diagnosed with bipolar disorder. Drugs.com at http://www.drugs.com/sfx/lithium-side-effects.html made me weep – not that this was going to help anything. I keep reminding myself that this is not usual when taking the drug, but my mind keeps placing the image of his two CKD parents before me.

“Moderate reversible increases in blood urea nitrogen and serum creatinine as well as proteinuria have been observed in patients with lithium toxicity. Rarely the decreases in glomerular filtration have been persistent. A variety of renal effects have been reported and include glomerular sclerosis, interstitial fibrosis, chronic interstitial nephritis, nephrotic syndrome, renal tubular acidosis and tubular atrophy.”

Sometimes you need to take a risk to save your life. I’m sure that’s what my friend’s doctors are doing here. I’ve known him all his life. I hope they’re doing the right thing.

On a more positive note, Amazon tells me all three books are now available in the Japanese market as well as being available in Europe and other areas.  Nothing like getting the word about CKD Awareness out to the entire world.

Today is Labor Day. Thank you to all those union organizers that were jailed repeatedly- like Benjamin Binenbaum, my maternal grandfather – for the advantages they won for us.

Until next week,

Keep living your life!

Once Upon a Time, Not So Long Ago…

I always think of myself as a lucky mother… which makes me laugh out loud since – as a retired New York City high school and college teacher – I’m used to hearing that as half a word. But I do refer to being a parent.

Here’s an example of why: I have everything I want, so when my first born asked me what I wanted for Mother’s Day this year I told her I wanted research (She’s an excellent researcher.) into the history of Chronic Kidney Disease. Guess what I got.

I am writing a novel that deals with time travel back to 1885 and needed this information to continue. I knew Chronic Kidney Disease was a relatively new field of medicine, but hadn’t expected it to be this new.

My daughter was astonished at how little she could get, but then again, there isn’t much history is there? So get ready for a (short) history lesson that combines my daughter’s research and mine.

In the 1700’s kidney diseases weren’t recognized for what they were and not often diagnosed, although people were dying of urea poisoning or dropsy.  Urea poisoning is what we now refer to as urea in the blood. Is this starting to sound familiar?

As for dropsy, MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=13311 defines this as

An old term for the swelling of soft tissues due to the accumulation of excess water….The Middle English dropesie came through the Old French hydropsie from the Greek hydrops which in turn came from the Greek hydor meaning water.

Today we call it edema and usually give the cause of it. For instance, if you have CKD, during your office visit the nephrologist will press on the skin of your leg to see if you have edema caused by CKD.

There’s a theory that Mozart may have died of CKD caused by recurrent urinary tract infections. This has been tossed around in fiction about Mozart’s life (Have you read Mozart’s Wife by Juliet Waldron? It’s an excellent historical fiction.), but there seem to be some circumstances validating this. You can read more about this at http://ukrocharity.org/2012/08/diary-of-a-kidney-lover-did-mozart-die-of-kidney-disease/

Let’s move up to 1827 and meet Dr. Richard Bright who worked at Guy’s Hospital in London. You may know of him already as The Father of Nephrology, although he also researched diseases of other parts of the body such as the heart, liver, pancreas, and pulmonary system.  Bright’s Disease, now called glomerulonephritis, is defined by the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glomerulonephritis/basics/definition/con-20024691 as

inflammation of the tiny filters in your kidneys (glomeruli). Glomeruli remove excess fluid, electrolytes and waste from your bloodstream and pass them into your urine. Also called glomerular disease, glomerulonephritis can be acute — a sudden attack of inflammation — or chronic — coming on gradually.

Although this designation held for over a century, we now call it nephritis, which is an inflammation of the kidneys. And what is CKD if not an inflammatory disease?

Not quite 100 years later, it was discovered that not all proteinuria (protein in the urine or ‘protein spill’) was considered dangerous. This is from the History of Nephrology by Neil Turner at http://historyofnephrology.blogspot.com/2014/11/marathon-nephritis-and-postural.html

Proteinuria after exertion was first described in 1878. It was memorably characterised by Collier in 1907 in a systematic report on 156 Oxford rowers training for the ‘Torpids’.  57% of urine samples taken 1-1.5h after vigorous rowing contained protein.  Smaller studies in other populations of athletes gave similar results. He compared these results with the historically recorded lifespans of 294 participants in the University Boat Race – they were longer than average.  This made it seem unlikely that post-exertional proteinuria conveyed a bad long term prognosis. 

I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to prove that theory since the first practical sphygmomanometer wasn’t yet available. It wasn’t brought to the U.S. until 1901, but was available earlier in Britain in an earlier form which was difficult to obtain, manipulate, and calibrate as you can see from the picture.

With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.

We’ll end this extremely brief history of nephrology with the words of nephrologist Veeraish Chauhan from his “A Brief History of the Field of Nephrology” at http://kidneydisease.about.com/od/Kidney-Disease/fl/A-Brief-History-of-the-Field-of-Nephrology.htm in which he emphasizes how young the field of modern nephrology is.

 Dr. Smith was an American physician and physiologist who was almost single handedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“. He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.

51 years. That was only 64 years ago, ladies and gentlemen. That was during my lifetime. I can’t imagine what my life would be like if these discoveries had never been made… or if I would have a life at all.

Do you have any more tidbits about the history of nephrology to share with us? If so, just add a comment.

On the book front, I wonder how many of you are aware that you don’t need to buy my books to read them. Are you a member of Amazon Prime or is someone in your household? Then you can borrow the books from the Kindle Owners’ Lending Library for free.  Do you have a favorite library? Then you can ask your librarian to order the book and once it arrives, read it for free. You can also borrow library books for free on your Kindle, but first you need to make certain your library has a copy. Then there’s BookLending.com. Enter the title and borrow it for free.  You can also lend it for free. I’m also looking into Lendleme.com, but haven’t explored it enough to recommend it yet.

Until next week,

Keep living your life!

We Are Not Alone, Unfortunately

I have a friend who keeps telling me that Chronic Kidney Disease is not as widespread as I think it is and that I should stop scaring people by telling them it is. My usual way is to present facts, but not argue. In this case, I found myself arguing which made me wonder if I could be wrong.  Why protest so vehemently if I were sure I was right?

And that’s what today’s blog is about. First, you should know this has nothing to do with whether my friend is right, or if I am. It’s bigger than that… a lot bigger.

How big? Well, let’s start with the United States of America.  This diagram is from The National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-statistics/Pages/kidney-disease-statistics-united-states.aspx.

I don’t want to scare you too, but 2008 was seven years ago.  How much more has the incidence of new CKD cases risen since then?  Notice it’s the over 65 population with the dramatic rise in new cases. That’s my age group.  Maybe it’s yours, too.

[Reminder from the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: Medicare is the U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.]

This next bit of information is from the American Kidney Fund at http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf and shows us the numbers for 2012.  That’s getting closer to today, but it’s still three years ago.

Kidney disease is the 8th leading cause of death in the United States.

An estimated 31 million people in the United States (10% of the population) have chronic kidney disease (CKD).

9 out of 10 people who have stage 3 CKD (moderately decreased kidney function) do not know it.

CKD is more common among women, but men with CKD are 50 more likely than women to progress to kidney failure (also called end-stage renal disease or ESRD)

Some racial and ethnic groups are at greater risk for kidney failure. Relative to whites, the risk for African Americans is 3.8 times higher, Native Americans is 2 times higher, Asians is 1.3 times higher, and Hispanics also have increased risk, relative to non-Hispanics.

I was diagnosed at stage 3, age 60, and had never heard of CKD before. This chart from the National Kidney Fund at www.kidney.org demonstrates the stages. The numbers outside the half circle represent the percentage of kidney function at each stage.

That means I was one of the 9 out of 10 people who had stage 3 CKD and didn’t know it, even though I was a woman over 50 (actually, well over 50). Talk about being blind-sided!

Time for another reminder – from my first book again: CKD is damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

Imagine being told you had an incurable disease.  What would your first thought be?  Mine was bizarre. I told the nephrologist that my daughter was getting married.  What I didn’t tell him because I was so shocked at this diagnose is that I thought it meant I was going to die very soon, but I couldn’t allow that because I wanted to be at her wedding.

By the way, that’s where my CKD Awareness activism comes from. I didn’t want any of us to think we were under threat of imminent death once we were diagnosed.  I’d rather explain how to get tested (Eighth leading cause of death in the U.S.) and – #SlowItDownCKD – slow down the progression of the decline of your kidney function.

Let’s take a look at over countries.  This is from Kidney Health Australia as of May this year at http://www.kidney.org.au/kidneydisease/fastfactsonckd/tabid/589/default.aspx

HOW MANY PEOPLE HAVE CKD?

• Approximately 1.7 million Australians (1 in 10) aged 18 years and over have indicators of CKD such as reduced kidney function and/or the presence of albumin in the urine.
• Less than 10% of the people with CKD are aware they have this condition.
• This means over 1.5 million Australians are unaware they have indicators of CKD.

WHO IS AT INCREASED RISK OF CKD?

• 1 in 3 Australians is at an increased risk of developing CKD.
• Adult Australians are at an increased risk of CKD if they:

• have diabetes
• have high blood pressure
• have established heart problems (heart failure or heart attack) and/or have had a stroke
• have a family history of kidney disease
• are obese (Body Mass Index BMI – more than or equal to 30)
• are a smoker
• are 60 years or older
• are of Aboriginal or Torres Strait Islander origin

Notice their statistics are similar to ours, but there are two more are higher risk groups.

“In 2013, nearly one million people died from chronic kidney disease. While this represents less than 2 percent of all deaths globally, it is a 135 percent increase from the number of chronic kidney disease-related deaths in 1990.

While the global increase in chronic kidney disease-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of chronic kidney disease-related deaths among people ages 15 to 49 since 1990.”

The quote above is from Humanosphere at http://www.humanosphere.org/science/2015/01/visualizing-the-rise-of-chronic-kidney-disease-worldwide/ and is related to The Global Burden of Disease Study.

So you see, we are not alone.  Nor are we living under a death sentence. We can spread awareness of Chronic Kidney Disease and educate those diagnosed as to how to slow down the progression of the disease.

Talking (I know, I know, writing) about this, The National Kidney Fund of Arizona will be holding a Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This includes free blood and urine testing, which is evaluated onsite using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Oh, one last thing. Have you heard about P2P’s Chronic Illness Buy & Sell page on Facebook at https://www.facebook.com/groups/P2PBuy.Sell/ ? It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

What If…

Have you ever become anxious about the unknown, specifically the future? You are not alone.  Since you have Chronic Kidney Disease, you are so the opposite of not being alone. You have a progressive disease, one which affects two of the most important organs your body possesses.

Most days, I wonder if I’ll stay at Stage 3A for the rest of my life or – despite my best efforts – I’ll end up on dialysis and need a transplant anyway.  It’s one of those things I try really hard not to dwell upon.

Whoops!  I did it again.  Let’s backtrack a bit so we all know what I’m writing about. I went back to the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definition of Chronic Kidney Disease (CKD).

Chronic Kidney Disease:  Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

According to DaVita.com, Stage 3A means:

A person with stage 3 chronic kidney disease (CKD) has moderate kidney damage. This stage is broken up into two: a decrease in glomerular filtration rate (GFR) for Stage 3A is 45-59 mL/min and a decrease in GFR for Stage 3B is 30-44 mL/min.

There’s a wealth of Stage 3 information at http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-3-of-chronic-kidney-disease/e/4749.

As usual, one definition leads to the need for another, in this case GFR.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.

Uh-oh, now we need to define both dialysis and transplant. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo

Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs.

There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.

As for transplant, WebMD at http://www.webmd.com/a-to-z-guides/kidney-transplant-20666 tells us

A kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney.

I should mention that while there are transplants from both living and cadaver donors, both will require lifelong drugs to prevent rejection.

All right, now that our background is in place, let’s deal with that anxiety.  Why worry (ouch!) if you have anxiety and you have CKD?

I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for help here.

In the August 16, 2012 post, I included this.

Poor mental health linked to reduced life expectancy

There  is  a  possibility  that  mental  health  problems  may  be  associated with  biological  changes  in  the  body  that  increase  the  risk  of  diseases such as heart disease.

In  this  study,  approximately  a  quarter  of  people  suffered  from  minor symptoms  of  anxiety  and  depression,  however,  these  patients  do  not usually come to the attention of mental health services. The authors say that  their  findings  could  have  implications  for  the  way  minor  mental health problems are treated.

The information was originally published on PyschCentral.com at http://psychcentral.com/news/2012/08/01/even-mild-mental-health-problems-linked-to-reduced-life-expectancy/42487.html

Not to be too morbid, but our life expectancy may already be reduced due to our Chronic Kidney Disease. Now we’re reducing it even further with our anxiety… even though we certainly may have cause to be anxious?

Time to deal with that anxiety.  But first, what exactly is anxiety?

The Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Anxiety is fairly explicit about what it is.

Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient’s personal history and memory, and the social situation…. a large portion of human anxiety is produced by anticipation of future events.

Nothing I want any part of! So how to I reduce my anxiety about my CKD so that I don’t further reduce my life expectancy?

I was so taken with Barton Goldsmith, Ph.’s advice that I wanted to post it all, but that would make this week’s blog far too long.  You can read what I omitted at https://www.psychologytoday.com/blog/emotional-fitness/201205/top-10-tips-reduce-anxiety

1. If you are prone to anxiety you have two choices .Give in to it or learn to live with it.
2. When you wake up tomorrow start doing something right away, and keep busy all day. Taking action by doing something, almost anything, will help you work through your anxiety.
3. Focus your attention on where the feeling of anxiousness is in your body and keep your attention there until the feeling moves or dissolves.
4. Anxiety will grow if it’s not directed into some positive action.Find someone who needs you and lend him or her a helping hand.
5. Talking to someone is one of the best ways to overcome your anxiety.
6. Exercise is another good way to keep from letting your fears overwhelm you.
7. Start a gratitude journal; write down three to five things that you are grateful for. Do this every night, it works and it’s very easy.
8. The opposite of fear is faith.When you are anxious, a great way to get out of it is to find some faith. Believing that things will get better is sometimes all it takes to make it better.
9. If watching the news fills you with anxiety – turn off the TV!
10. Courage is not the absence of fear, but taking action in spite of fear.

Now it makes sense to me that Bear and I have a gratitude jar into which we drop a slip of paper containing one thing that made each of us happy each day. Now it makes sense to me that I look for ways to help others.  I think I’ve been warding off my own anxiety without knowing it.

Talking about not knowing, have you seen P2P’s Chronic Illness Awareness Buy and Sell page on Facebook?

Until next week,

Keep living your life!

A Cautionary Tale

Today is Memorial Day here in the U.S. It’s a celebration of our fallen warriors, the ones who fought for us so we wouldn’t have to fight for ourselves… and it began as a celebration of freed slaves honoring those who fought for their freedom way back in 1865. As Time.com at http://time.com/3894406/who-invented-memorial-day/ phrases it:

On May 1, 1865, freed slaves gathered in Charleston, South Carolina to commemorate the death of Union soldiers and the end of the American Civil War. Three years later, General John Logan issued a special order that May 30, 1868 be observed as Decoration Day, the first Memorial Day.

I married a retired military man. Memorial Day has had more meaning for me in the last eight years than ever before in my life.  It’s been a revelation, as our wedding invitation stated:

The Retired Lieutenant Colonel

Paul Arthur Garwood

and

The Former Wannabe Hippie

Gail Rae

Invite you to our wedding reception

Thank you again to all those who gave their lives so I wouldn’t have to.

Being a bit dramatic here, I also sort of saved my own life last week by saving my kidneys from further damage.  I know, I know. There’s no comparison, but it sure is a good way to get into today’s topic.

I wrote about dreaming about my bladder last week.  Well, I decided I needed to take that dream a bit more seriously. Off I went to my local pharmacy for an over the counter (OTC) urinary tract infection (UTI) kit.

I chose the Azo Brand because it is

the same urinary tract infection test used in many doctor’s offices, to determine if the bacteria that cause a UTI are present. {The description continues.} Then call your doctor with the results. The most reliable, over-the-counter UTI home test available, AZO Test Strips offer two UTI tests in one – including both Leukocyte (white blood cells) and Nitrite tests – which makes them more reliable than nitrite-only tests. (Doctors look for Leukocytes as well as Nitrites in diagnosing UTIs.)

Leukocytes are higher when you are fighting an infection. Unfortunately, that’s any infection. So what about nitrites?

When the urinary tract is infected by harmful bacteria then it leads to the development of nitrites as a byproduct. The kidneys are responsible for filtering the blood and for the elimination of unwanted waste materials from the body. However, they are incapable of filtering out the nitrites. The nitrites can however travel from the kidneys into the bladder and get stored there. They are then passed out along with the urine. Therefore the presence of nitrites in urine is generally an indication of the presence of a urinary tract infection.

Thank you for that information, Diseases List at http://diseaseslist.org/nitrites-in-urine/  Notice our kidneys are NOT at fault for once.

So far, so good.  I mean bad.  You take the test by urinating on a dipstick.  First you urinate for a second or two, then hold the dipstick under the urine stream, and then sort of mop up the excess urine.  Pay attention when you do this or it can get messy.

There were three test strips with accompanying color charts in the box.  I took all three. (Did I ever tell you about a family member who took the same OTC pregnancy test a dozen times just to be sure?  This doubt must run in the family.) You guessed it. All three were not just positive for UTI, but highly positive.

As you know, doctors don’t prescribe medication over the phone so I tried to make an appointment with my primary care doctor.  She is much sought after and had no openings that week, much less that day. She is part of a practice so I took an appointment with another doctor in the practice, one I had seen a time or two before under the same circumstances.

He had my chart in front of him.  I was wearing a medical alert bracelet. I told him three times I had Chronic Kidney Disease. In addition to ordering ciprofloxacin 250 mg. – which is safe for certain stages of CKD for certain periods of time at certain dosages – he ordered phenazopyridine 200 mg. for the pain. He kept talking about not being alarmed when it changed the color of my urine.

I didn’t feel like he’d heard a word I said.  I wasn’t too worried, because I always check with the pharmacist before taking any new medication.  She was alarmed, told me not to buy this medication, and that she would be contacting this doctor to tell him prescribing phenazopyridine for anyone with CKD was inappropriate.  This is the second time this has happened since I was diagnosed with CKD.

The National Institutes of Health warn that you tell your doctor if you’ve had kidney problems should he/she prescribe this drug.  I did… a minimum of three times. This is what Drugs.com at http://www.drugs.com/mtm/phenazopyridine.html had to say about this pain reliever.

What is the most important information I should know about phenazopyridine?

You should not use phenazopyridine if you have kidney disease.

Okay, beating a dead horse here (I’m just so damned annoyed!), so let’s see if we can figure out why CKD patients should not be using this drug. Uh-oh, MedicineNet at http://www.medicinenet.com/phenazopyridine-oral/article.htm tells us

Although the exact mechanism of action is unknown, phenazopyridine is thought to provide relief of symptoms of UTIs by acting as a local anesthetic on the lining of the urinary tract.

All right, let’s try this another way then.  Why shouldn’t CKD patients take this drug? After looking at Wikipedia – even taking into account that anyone can edit these entries – I’m wondering why anyone would take it at all. It’s a form of Azo dye.

Less frequently it can cause a pigment change in the skin or eyes, to a noticeable yellowish color. This is due to a depressed excretion via the kidneys causing a buildup of the drug in the skin, and normally indicates a need to discontinue usage.

What! Exits via the kidneys? Excretion can be depressed?  Nope, not for me, not for you either. Take a look at http://en.wikipedia.org/wiki/Phenazopyridine

Here’s the caution: sure we trust our doctors and those doctors they trust, but check with your pharmacist, too.

Hey, where are the weirdest places to read my CKD books entries?  We got some really weird ones, but we want to see yours.  The contest runs until the end of the month.  That’s plenty of time to snap a picture and post it. Not on FB?  Include it as a comment on the blog or email it.  You can even post it on Twitter.

Until next week,

Keep living your life!

Water, Water Everywhere

Yesterday was Mother’s Day here in the U.S.  Here’s what I posted on that day:

When I grew up, mothers were all married women. Not anymore! Happy Mother’s Day to the moms who are moms in a lesbian relationship, the dads who are moms in a gay relationship, the single dads who are both mother and father, the moms in straight relationships, the older siblings bringing up their brothers and sisters, the single moms and those who have lost their child. You’re all still mothers and I relish enjoying this day with you.

I hope yours was a very happy one, even if your children are far away like my Nima who is in New York.

This mother (two biological daughters, two step-daughters, two significant others) has been writing about sea sickness remedies, both medical and natural, for the past two weeks.  That got me to thinking about another kind of water and why we need it.

I’ve mentioned that I see a nutritional counselor to help me prevent my pre-diabetes from becoming diabetes. We all know I need 64 oz. of fluid intake a day as a Chronic Kidney Disease patient, but it’s not all water.  There’s my beloved 16 ounces – or two cups – of coffee a day plus any solid that turns to a liquid when melted (think ices) and the liquid in fruits such as watermelon.  By the way, did you know that our bodies are 50-75% water depending upon our health and age?

Debbie, my nutritional counselor, kept hitting the need to hydrate.  Until she realized I already take this into account daily, she asked me to keep count of the number of eight ounce glass of water I drank each day.  That’s how important she felt it was.  We know that; we’re CKD patients.

But, have you ever wondered why it’s so important that we keep hydrated?  That’s one of those questions that was answered when I was first diagnosed, but – being who I am – I don’t remember the answer.  And that got me to wondering if you did.

The most obvious answer is that we need water so that our metabolism can function at its best. This is important so we have energy and build new cell materials. Let’s explore this a bit more.

The Oxford Dictionary defines catabolism (love that name) as

the breakdown of complex molecules in living organisms to form simpler ones, together with the release of energy; destructive metabolism.

In this case, ‘destructive’ is a positive.  No destruction of complex molecules = no release of energy.  Heaven knows we already have enough problems with energy as CKDers.

I used the Medical-Dictionary at http://medical-dictionary.thefreedictionary.com/anabolism for an explanation of anabolism.

The phase of metabolism in which simple substances are synthesized into the complex materials of living tissue.

So catabolism is the function of metabolism which breaks down complex molecules for energy and anabolism is the function that builds up cell material.

Oh, almost forgot – metabolism simply means change. How can I remember a college etymology lesson from fifty years ago, but not remember what my nephrologist told me seven years ago????

All right, but why the need to hydrate? While a commercial site, Nestle Waters at http://www.nestle-waters.com/healthy-hydration/water-fonctions-in-human-body (I did wonder about that ‘o’ in fonctions.) lists the five reasons we need water.  Notice number five and remember that toxins need to be eliminated, too.  That’s the job of the kidneys… and they need water to do it.

1. Cell life
2. Chemical and metabolic reactions
3. Transport of nutrients
4. Body temperature regulation
5. Elimination of waste

As I researched, I hit medical sites, sports sites, pregnancy sites, elder care sites, and even pediatric sites.  All included hydration in their how-to-stay-healthy advice.

As CKDers, we know that an excess of sodium, phosphorous, potassium, and protein is not good for us.  Guess what flushes out the excess.  That’s right.  Your kidneys filter it from your blood, it’s converted to urine, and leaves your system.  Of course, you don’t want to overtax your already compromised nephrons by going over your daily limits of each of the above.

We’ll pause for a moment here while you go get a drink of water.

Refreshed?  Okay.

Did you know there are different types of water? Many thanks to Consumer Reports for the following chart.

Artesian

Water obtained from a well that taps a confined aquifer, an underground layer of rock or sand that contains water. Example: Fiji Natural Artesian Water.

Distilled

Water that has been boiled and then recondensed from the steam that the boiling produces. Distillation kills microbes and removes minerals, giving water a flat taste. Example: Glacéau Smartwater.

Mineral

Groundwater that naturally contains at least 250 parts per million of dissolved solids. All minerals and other trace elements must be present in the water when it emerges at the source. Example: Calistoga.

P.W.S.

Public water source, also known as municipal water supply, or tap water. Fun fact: Aquafina, one of the top 10 selling domestic brands, used to say “P.W.S.” on its label—but changed that in 2007 under pressure from Corporate Accountability International to make clear that the water came from a public supply and not some pristine mountain spring called P.W.S.

Purified

Water from any source that has been treated to remove chemicals and pathogens according to standards set by the U.S. Pharmacopoeia. Must contain no more than 10 parts per million of dissolved solids. Distillation, deionization, and reverse osmosis are all purification methods. Examples: Aquafina, Dasani. (Note from me: recently, Dasani has started added minerals to their water.)

Sparkling

Water that contains carbon dioxide at an amount equal to what it contained when it emerged from its source. Carbon dioxide lost during the treatment process may be added back. (Carbonated waters such as soda water and seltzer are considered soft drinks, not bottled waters.) Example: Perrier.

Spring

Water derived from an underground formation from which water flows naturally to the Earth’s surface. Spring water must be collected at the spring or through a borehole tapping the underground formation (aquifer) feeding the spring. Examples: Arrowhead Mountain Spring Water (Nestlé), Evian. (Hmmm, Nestle also has minerals added now.)

I stick to either spring water or osmosis filtered water.  Be wary of any water with minerals added. You don’t really need more of those.

 

It’s contest time.  Post a picture of you reading any of my three books in the most unusual place you can think of and win a copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.  You can post your pictures at https://www.facebook.com/WhatHowearlyCKD which is SlowItDownCKD’s Facebook page.  Make sure the title and your face are clearly visible. Keep it clean and keep them coming!  The contest ends on May 31.  Thank you to inspired reader, Geo De Angelo, for sparking the idea in my mind. I’m eager to see how creative you can get.

Until next week,

Keep living your life!

The CKD/Diabetes Dance

Welcome to the last blog for National Kidney Month. First thing I want to do is let you know it’s been made abundantly clear to me that I should be promoting my books {never thought of myself as a sales person} as a way to help spread awareness of Chronic Kidney Disease.

Here goes: What is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Books of Blogs, Part 1 and The Book of Blogs, Part 2 are all available in both print and digital on Amazon.com.

Students: do NOT rent any of these for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.

Everyone else, there are programs available on Amazon to share the books with others, buy a digital copy at minimal cost if you’ve ever bought a print copy, and periodic free days. Oh, and please do write a review once you’ve read the books.

Another way I’ve been spreading awareness of CKD this month is by guesting on a radio show last Monday night.  Many thanks to Andrea Garrison of Online with Andrea for celebrating National Kidney Month by interviewing me about CKD. Hopefully, you’ve already heard it but here’s the link anyway: http://www.blogtalkradio.com/onlinewithandrea/2015/03/23/chronic-kidney-disease

Still uncomfortable with selling my books, although not at all with spreading Chronic Kidney Disease Awareness, I’m glad to move on to the topic of the day which is what does Diabetes, Type 2 do to your kidneys.  I’ve been researching this, and have found quite a bit of information about Diabetes causing CKD, but not that much about developing Diabetes, Type 2 while you have CKD.

The obvious thing to do here was to start with the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html.

When glucose {blood sugar} builds up in the blood instead of going into cells, it can cause two problems:

Right away, your cells may be starved for energy.

Over time, high blood glucose levels may hurt your eyes, kidneys, nerves or heart.

Okay, that would help explain why I’m so tired most of the time, but I’m more interested in how Diabetes “may hurt your…kidneys….” right now.

DaVita at http://www.davita.com/kidney-disease/diabetes/the-basics/diabetes-and-chronic-kidney-disease/e/427  explained how and effectively:

When there is too much sugar in your blood, the filters in your kidneys (called nephrons) become overworked.

Tiny blood vessels {glomularli}  transport blood that needs to be filtered into the nephrons. Excess blood sugar can damage these tiny vessels, as well as the nephrons themselves. Even though there are millions of nephrons, the healthy nephrons must work harder to make up for the ones that are damaged. Over time, the healthy nephrons will become overworked and damaged if your blood sugar remains high. Your kidneys may lose their ability to filter fluid and wastes and may no longer be able to keep you healthy.

This sounded awfully familiar to me, especially the last part. Well, no wonder!  On page 82 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

… a number of nephrons were already destroyed before you were even diagnosed {with CKD}. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.

Two different diseases, both of them damaging your kidneys in the same way.  Wait a minute here.  I already have kidney damage to the tune of a GFR of 49.  Does this mean I’m in real trouble now with the pre-diabetes that’s been being treated for the last couple of weeks?

Well, no.  The idea of treating the pre-diabetes is so that it doesn’t become Diabetes.  The principle is the same as it is with CKD: catch it early, treat it early, prevent more damage if possible.

But wait.  There are more similarities between CKD and Diabetes, Type 2.  According to The American Kidney Fund at http://www2.kidneyfund.org/site/DocServer/Diabetes_and_Your_Kidneys.pdf?docID=222

African Americans, Native Americans, Latin Americans and Asian Americans are more likely to have Type 2 diabetes.

 Back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 13 this time.

Nor was I a Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American, ethnic groups that have a 15 to 17% higher occurrence of CKD.

No wonder Diabetes can cause CKD.  Now I’m wondering if CKD can cause Diabetes or if the two are simply concurrent most often. While the infograph from Healthline at http://www.healthline.com/health/type-2-diabetes/statistics-infographic didn’t answer this question, the information included was too good to pass up. I urge you to take a look at it for yourself by simply clicking on the address.

The following simple, yet eloquent, sentence leaped out to me as I read a study published in the 2010 American Society of Nephrology Journal at http://cjasn.asnjournals.org/content/5/4/673.full.pdf

CKD prevalence is high among people with undiagnosed diabetes and prediabetes.

 Maybe that’s the key: undiagnosed.  I know I wasn’t particularly worried about the several years of a high A1C test result until I heard the word pre-diabetes.  Whoops! Time for a reminder of what this A1C test is from page 54 of my first book.

This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.

While I may not fully understand if CKD can cause pre-diabetes or Diabetes, type 2, it’s very clear to me that the two MAY go hand in hand.  There’s no reason to panic, folks.  But there is plenty of reason to have yourself tested for both pre-diabetes and Diabetes, type 2 via the A1C.  After all, you have CKD.

Until next week,

Keep living your life!

Sticking It to Myself

First of all, thanks for your patience in the blog host debacle.  Just goes to show you don’t miss your water until the well runs dry.  Translated that means I love WordPress as the blog host and will not be making any changes from here EVER!  Further translated that means the name of the blog will always be SlowItDownCKD and we’ll always be at https://gailraegarwood.wordpress.com. I do believe I’ve just apologized.  I seem to be doing that a lot this week.

Happy third week of National Kidney Month. Seems so odd to place ‘Happy’ and ‘National Kidney Month’ in the same sentence.  Yet, it makes sense. How can we spread awareness of Chronic Kidney Disease if we don’t have a national effort? Hmmm, that sort of makes it happy.

Okay, down to brass tacks (or sharp jabs) now. During the first week of National Kidney Month, my PCP decided it was time to deal with my consistently high A1C test results.  Good timing on her part, huh?

Let’s go back just a bit to remind everyone what the A1C test is for. On page 54 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

Somewhere along the line, one of your doctors may order an A1C test.  This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.  This is important since quite a few CKD patients develop the disease from diabetes.

Ah, so she’s trying to help prevent me from developing diabetes. That is the number one cause of CKD.  But I already have CKD.  Let’s see why it’s important for those with CKD to avoid diabetes, too.

I went directly to The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

With diabetes, the small blood vessels in the body are injured. When the blood vessels in the kidneys are injured, your kidneys cannot clean your blood properly. Your body will retain more water and salt than it should, which can result in weight gain and ankle swelling. You may have protein in your urine. Also, waste materials will build up in your blood.

Diabetes also may cause damage to nerves in your body. This can cause difficulty in emptying your bladder. The pressure resulting from your full bladder can back up and injure the kidneys. Also, if urine remains in your bladder for a long time, you can develop an infection from the rapid growth of bacteria in urine that has a high sugar level.

Oh no!  I already have kidney damage. Now I could be exacerbating it. Wait a minute.  How is this happening?  I exercise, watch my renal diet, try to avoid stress, and get enough sleep.  Am I doing something wrong?

In type 2 diabetes, your body does not use insulin properly. This is called insulin resistance. At first, the pancreas makes extra insulin to make up for it. But, over time your pancreas isn’t able to keep up and can’t make enough insulin to keep your blood glucose levels normal. Type 2 is treated it with lifestyle changes, oral medications (pills), and insulin.

This is from the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html  A little clarification here: type 1 is the one in which people don’t produce insulin and type 2 is when the body is insulin resistant.

Wow. Just wow.  What’s tickling my mind now is the latest information I’ve read about statins possibly resulting in type 2 diabetes by affecting insulin resistance in a negative way.  Don’t get excited just yet.  Nothing’s been verified and I’m not even sure I understand the research.

All right, jabs next.  Since this is all new to me, I was told to check my blood sugar daily.  I looked dumbly at my PCP.  She caught the look and explained I could get my supplies at the pharmacy and sent over a script.  After four days of running around after my insurance, it was determined Medicare would not pay for the supplies since I didn’t actually have diabetes.  If Medicare doesn’t cover it, my secondary insurance doesn’t. So, I paid out of pocket.

Off I went to the pharmacy, where the pharmacist explained what I would need. I looked dumbly at my pharmacist.  He caught the look and offered to get the supplies for me.  I’m sure he meant well, but he gave me the pharmacy brand meter which means I can only use their test strips.  It’s sort of a forced income for them.  He also gave me lancets (I used to think that was just the name of an English medical journal. Silly me.), but they weren’t ultra-thin and they hurt.  What he didn’t give me was the lancet device.  I didn’t know that existed until the diabetes counselor provided by my PCP told me about it.

I suspect I over checked because my fingertips are black and blue.  However 2 hours after eating is the norm.  I just took a break and monitored my blood glucose. It’s 121.  While that’s low for me, normal is in the 70-110 range, so even though I took 500 mg. of Metformin this morning, I’m going to have to exercise when I’m done (Doesn’t scare me; I have to exercise for the CKD anyway.) to lower that number.

I can see I’ll be blogging about this again. There is so much to cover here!

I keep forgetting to ask.  Would those who you who have read The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and/or The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 please write a review on Amazon.com. I am interested to hear what you think of these books.

Did you know you can register for the Phoenix Kidney Walk all the way up until that morning, April 19th?  If you’re going to register, why not join Team SlowItDownCKD?  Here’s a link to make that easy: kidneywalk.kintera.org.

Until next week,

Keep living your life.

Let Them Eat Cake!

We have still not finished celebrating my birthday.  Say, now that you’ve downloaded your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 as my gift to you on my birthday, why not share it for free for 14 days on the Kindle Book Lending program?

Another low cost way of getting the book is asking someone who bought the print copy from Amazon to buy the digital one for you via the Kindle MatchBook program for $2.99.  Of course, you can always ask your library to order a copy.  There are lots of low cost and free ways to get the book.

We were up in Flagstaff for two days as part of my birthday celebration.  Bear remembered that I had repeatedly expressed a desire to see Meteor Crater. Yep, I wanted to visit a hole in the ground for my birthday.

While we were there, we also visited Sunset Crater and learned the difference between eruption and meteor craters.  Going whole hog, we drove along to Wakupti and Wukoki to see the ruins of the pueblos there. This is an amazing state we live in.

We had to stay somewhere, so we stayed somewhere special.  The England House Bed & Breakfast was built about 1902, which made me feel right at home since I raised my daughters in an 1899 Victorian house on New York’s Staten Island.  Now, here’s where the renal part of our overnight get-away comes into play and why there’s a blog about it.  I know, I know… you thought I just wanted to share my birthday fun with you.

Well, that too, but the owner of the B & B – Laurel Dunn – asked if we had any eating restrictions.  Good question for renal patients; bad question for those cooking for them.  I told her. In detail. With examples.  And she came through.

While my husband enjoyed fruit soup, I had fresh cut melon, strawberries, and blueberries.  I had never heard of fruit soup before, so Laurel explained that it was fruit liquefied with yoghurt. Uh-oh, the dreaded yoghurt. That’s not recommended on my renal diet due to the phosphorous in it.

As a Chronic Kidney Disease Patient, my kidneys do not filter my blood as well as they were meant to.  Too much phosphorous can cause problems. I went to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 81} to remind myself what phosphorous does for us and why too much of it is not a good thing when you’re a CKD patient.

I have to admit I didn’t know anything about phosphorous. This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.

But, of course, there was more to breakfast.  Bear enjoyed a lovely soufflé and muffins.  Bing, bing, bing. A soufflé has a custard base, in other words, a creamy base.  I think I’ve mentioned before that I’m also lactose intolerant.  I’ll say this, it certainly looked tasty.  So what did I have instead?  A simple vegan cheese omelet with four spears of asparagus cunningly arranged over it.

The night before, Laurel had opened her refrigerator to me so I could read the labels on different products.  One was the vegan cheese. It looked all right as far as my sodium, phosphorous, potassium, and protein restrictions, but I had never tasted it before. Let’s just say it’s probably an acquired taste.  My fault, not Laurel’s.

And the excruciatingly aromatic muffins that Richard, Laurel’s partner, baked?  Why did I pass them up? You guessed it.  It was the phosphorous again.  But I did not go away hungry.  Laurel and Richard provided cranberry/blueberry bread from The Wild Flower Baking Company. Apparently this is a specialty item since I could not find it on their website to pull up the ingredients.

Let’s put it this way: this bread was so good that I had it instead of the ugly blue cake I got for the family because I felt bad for it.  I let them {the family} eat cake, while I feasted on the bread.  At least that was the plan.  Once they tasted my bread, they clamored for it.  Ever see five grown children and a husband politely clamor?

But wait, there’s more.  Each juice Laurel had contained added sugar of some kind… except Ceres mango. It was not nectar, but juice sweetened with another juice – pear juice.  And it was delicious.  That became what I was going to have instead of ice cream at my birthday dinner.  Well, until everyone else tasted it.  You know the story.

You don’t think I let a breakfast go by without 1/2 of of my 16 ounces of coffee a day, do you?  It was superb, absolutely superb.

Add chicken cacciatore with brown rice that I made and was totally renal friendly and that, my friends, is how to enjoy your birthday get-away and your birthday dinner without breaking the renal diet.

As for exercise, ummm, well, it was too cold! No, really.  See, I’m even wearing a coat. I console myself with the fact that I got right on the exercise band wagon the very next day.  That’s okay, right?  It is, isn’t it?

Until next week,

Keep living your life.

Urine or You’re Out

How odd that urine is so important to us.  Make no mistake; if you have Chronic Kidney Disease, you’re always keeping an eye on it.  I’m pretty sure you all know about the color chart to see if you’re hydrating enough.  If you don’t hydrate enough, your kidneys can’t do their jobs as well… and they’re already struggling to do them. This is the least complicated urine hydration chart I’ve seen.

Of course, I’ll go back to remind you of just what the jobs of your kidneys are.  My source?  My first book about our disease, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 7.

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

These two organs, the master chemists of our bodies, have several functions: regulating the fluid balance in the body, providing vital hormones, producing erythropoietin, and producing the renin that regulates blood pressure. This is why CKD patients need to be careful about sodium, potassium, chloride, calcium, magnesium, and phosphates. Your nutritionist may not even mention magnesium to you since this constitutes only 1% of extra cellular fluid. Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

Wait a minute; I think we need to go even further back.  A picture of the urinary tract would probably be helpful here, too.

Okay, now I can start writing about your urine. I’m pretty sure I mentioned in an earlier blog how disturbed I was to be one point over the normal range for microalbumin. Here’s a definition of just what that is.

Micro, or very small amounts, of albumin in the urine. Ur stands for urine. {As in the test for proteinuria.} Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.

Read that last sentence again. There seems to be a Catch 22 here. As a Chronic Kidney Disease patient for the last seven years, this has never shown up in a urine test for me before. I am including both the 24 hour variety and the random {Dipstick} variety in that never.

So now we know about microalbumin.  What about proteinuria?  Notice the ur in the word.  We just learned that means urine.  This is another indication of kidney disease.  I have never been out of acceptable range for this.  According to WebMd at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

Healthy kidneys do not allow a significant amount of protein to pass through their filters. But filters damaged by kidney disease may let proteins such as albumin leak from the blood into the urine.

Filters?  This diagram of the glomerulus may help.

If albumin is a protein, are proteinuria and microalbumin the same? Well, no.  Health Communities at http://www.healthcommunities.com/proteinuria-and-microalbuminuria/overview-of-proteinuria.shtml tells us

Albumin is particularly useful in absorbing bodily fluid into the blood. Because the albumin molecule is relatively small, it is often among the first proteins to enter the urine after glomeruli are damaged. Therefore, even minor kidney dysfunction is detectable with proper diagnosis of microalbuminuria.

All right, got it?  Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein. Once upon a time, you always needed to conduct a 24 hour urine test for this information, but…

In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse {A service of the NIH} at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.

And that is where creatinine comes in and why you need to be aware of your creatinine levels in your urinalysis. By the way, blood tests will also report the amount of albumin and creatinine in your blood. This could promote another discussion, one about Blood Urea Nitrogen tests, but it would be out of place here since that’s not part of the urine.

As you can see this is a complex topic.  You need to be aware of what the color of your urine can tell you about your hydration – whether or not you have Chronic Kidney Disease – and monitor both your microalbumin and proteinuria, as well as your creatinine.

Another complex topic is editing the new print books.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 aren’t quite ready.  I’m working with a new publisher and we’re just getting to know each other’s styles.  The good part about that is you get two books for the price of one on Amazon.com digital until the print books are ready.  Look for The Book of Blogs: Moderate Stage Chronic Kidney Disease.  Once the print copies are ready, I promise a day of the digital copy for free… if that perk is still available to me at that time.

I don’t know about you, but I get just as tired from overdoing it for good things as well as bad.  This weekend was a test of how well I could adhere to my renal diet with date day, a memorial dinner, and a celebratory champagne brunch.  Being human, I blew it on ice cream.  My pounding heart and lightheadedness have convinced me: no more sugar treats!  Although, some of my non-CKD friends report the same symptoms upon a sugar overdose…

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer

>59 mL/min/1.73

47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

“Nephrons: The part of the kidney that actually purifies and filters the blood.”

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist {kidney specialist}. You’ll need a renal {kidney} dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis {artificial cleansing of your blood}. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my fluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

I researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,

Keep living your life!

Flanked by the Pain

What a whirlwind week it’s been here in Arizona.  We’ve taken the Red Rock Jeep Tour in Sedona, lunched at The Asylum in Jerome, and visited The Palace Restaurant and The Sharlott Hall Museum in Jerome, all while we stayed in The Vendome Hotel in Prescott.  We’ve even been to Arizona Broadway Theater for lunchtime theater and to Sustainable Blues for a dance lesson.  No wonder my brother and sister-in-law had to go home to get some rest.

The only thing consistent about this past week, like every week since I’ve been diagnosed with Chronic Kidney Disease is no kidney pain.  Yet, a reader has told me she experiences pain in her kidneys although her doctors tell her this is not a symptom of kidney disease.  Unfortunately, I neglected to ask what kind of kidney disease she has when I offered to blog about this for her.

When I started researching, I found there are many different causes for kidney pain.  MedicineNet.com at http://www.medicinenet.com/kidney_pain/page3.htm offers a list of these causes:

“Some of the major underlying causes of kidney pain or flank pain are as follows:

• Urinary tract infections, mainly pyelonephritis
• Kidney stones
• Diabetes
• Glomerulonephritis
• High blood pressure
• Polycystic kidney disease (congenital)
• Congenital malformations in the renal system resulting in complete or partial blockage of urine flow
• Drugs or toxins that harm kidney tissue (for example, pesticide exposure or chronic use of medications such as ibuprofen [Advil, Motrin, and others])
• Drinking alcohol may cause acute or chronic flank pain; the pain source, depending on the individual, may be from the kidneys or the liver.”

Wow!  And doctors say kidney pain is not a symptom of CKD?  Notice the two leading causes of CKD on this list: diabetes and high blood pressure. Oh, and the “drugs or toxins that harm kidney tissue….”

I clearly remember being asked if I had flank pain when I was first diagnosed… and I clearly remember asking where the flank was.  For those of you like me who don’t know, the primary definition of flank is “the fleshy part of the side between the ribs and the hip.”  Thank you for that Merriam Webster Dictionary at http://www.merriam-webster.com/dictionary/flank.

Then, never having experienced it myself, I had to know what it felt like – or at least find a description of the pain. eHealthStar (which is a new site for me) at http://www.ehealthstar.com/what-does-kidney-pain-feel-like.php describes it as:

• Sudden (acute) or persistent (chronic)
• Mild or severe
• Sharp, dull, throbbing or, rarely, cramping or colicky
• One sided or both-sided.

Kidney pain is often, but not always, associated with tenderness in the kidney area.

Wait a minute; that’s covers just about every kind of pain you can think of.  So if you have a pain in your flank area, you have CKD – right?

Wrong.  Remember the list of other possible causes.  We’re familiar with kidney stones – a crystallization of mineral and acid salts that form a stone in the kidneys – which are not CKD.  The ‘C’ in CKD is for chronic or long term, in this case long term deterioration of your kidney function.

Drinking, while it may affect CKD, is not CKD. If you drink and experience flank pain, it does not mean you have CKD nor that you’re going to develop CKD.  Although, it might not be a bad idea to be tested should you have your suspicions.  Speak to your primary care doctor about this.

Numerous urinary tract infections may be a cause of CKD, but a single urinary tract infection may not.  Even if you’ve had numerous UTIs, this does not mean that the pain from these indicates CKD.  Although….

Pyelonephritis, an infection of the kidneys is a more serious UTI, as explained by WebMD at http://www.webmd.com/a-to-z-guides/kidney-infections-symptoms-and-treatments

“Most cases of pyelonephritis are complications of common bladder infections. Bacteria enter the body from the skin around the urethra. They then travel up the urethra to the bladder.

Sometimes, bacteria escape the bladder and urethra, traveling up the ureters to one or both kidneys.

Pyelonephritis is a potentially serious kidney infection that can spread to the blood, causing severe illness. Fortunately, pyelonephritis is almost always curable with antibiotics.”

This makes quite a bit of sense. The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder.

The urologist actually had me look through the cystoscope myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.  Believe me, it felt surreal to be able to look inside my own body in real time.

Notice I’m exploring all the items on the list although not in the order MedicineNet.com offers them.

What’s next?  Let’s take a look at Glomerulonephritis. I went right back to my old friend The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glomerulonephritis/basics/definition/con-20024691 for some answers.  That’s where I found this definition of the disease:

“Glomerulonephritis (gloe-mer-u-low-nuh-FRY-tis) is inflammation of the tiny filters in your kidneys (glomeruli). Glomeruli remove excess fluid, electrolytes and waste from your bloodstream and pass them into your urine. Also called glomerular disease, glomerulonephritis can be acute — a sudden attack of inflammation — or chronic — coming on gradually.”

So this one does have more to do with the kidneys, but it’s still not CKD.  It can be acute, which CHRONIC kidney disease cannot.  Obviously, congenital diseases or malfunctions of the kidney are also not CKD since you are born with them, rather than having a slow deterioration of your kidney function.

For the life of me (cute, huh?), I cannot understand why a nephrologist would tell a CKD patient that flank – or kidney – pain cannot be associated with CKD when this may be one of the symptoms.  I’m going to have to suggest to the reader that asked for this blog that she challenge her nephrologist… again.

Want to hear about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? Of course, you do (she decided unilaterally). I was delighted to have new blog readers inform me that they’ve ordered multiple copies of the book for friends and family since these same new readers are also newly diagnosed CKD patients.  Hurray!  Some people are taking my advice.

Until next week,

Keep living your life.

Sleepus Interruptus

I just started – and trashed – three different versions of what I thought today’s blog would be about because I didn’t understand the research.  That’s the trouble with not being a doctor, and why I always remind you to speak with your nephrologist before you take anyone’s advice about your Chronic Kidney Disease, even mine.

I finally decided to write about my first choice.  This is yet another indication that our hunches are right.  My hunch after a night of waking up just about every hour was to write about CKD and interrupted sleep.  I should have listened to myself and saved all that time.

DaVita.com at http://www.davita.com/kidney-disease/overview/living-with-ckd/sleep-issues-and-chronic-kidney-disease/e/4896 tells us there are several reasons CKD patients have sleep problems:

• restless leg syndrome
• sleep apnea
• inadequate dialysis clearance
• emotions
• changes in sleep patterns
• caffeine

We share most of these reasons with those who do not have CKD except for those dealing with dialysis.  This includes the inadequate dialysis clearance.  It also includes restless leg syndrome which is usually associated with hemodialysis session. Since I only write about early stage, I won’t be discussing these causes.

Let’s talk about sleep apnea.  I wrote a blog about on August 12, 2012 that refers to this.  The most important information from that blog is:

“I found a study at http://www.medscape.com/viewarticle/538872which clearly links

sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

‘We think there may be a causative factor here; that sleep apnea may be causing direct

 glomerular injury,’ Dr. John J. Sim (Kaiser Permanente, Los Angeles, CA) told renalwire .

‘We already know that sleep apnea causes hypertension and that hypertension causes

kidney disease.’ If some degree of causality can be shown, it’s possible that treating sleep

 apnea may slow the progression of kidney disease, the authors speculate.”

This particular study was conducted in 2005.

Obstructive sleep apnea (OSA) was also the subject of January 13, 2014’s blog.  That’s where the following information is from:

“Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it

does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National

Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of

the problems of CKD.  It can also result in glomerular hyperfiltration.”

This is from a 2010 study.

Okay, so I have sleep apnea, had a sleep study and started wearing a Mandibular Advancement Device (MAD) at night to correct the problem, yet I still experience interrupted sleep.

Hmmmm, what is this ‘changes in sleep patterns’? Oh, of course.  Because I have CKD, I become more tired and even drowsy during the day.  Maybe I’ll sit on the couch in the family room to read for a bit; maybe I’ll even lay down there; and maybe – just maybe – I’ll fall asleep during the day.  Nothing wrong with naps, but if they’re long naps they could interfere with your sleep pattern.

So can going to bed earlier.  I tried that on really tired days and ended up waking up repeatedly.  I do go right back to sleep, but it just didn’t seem restful. Keep in mind that as you age, your sleep cycles are lighter and shorter.  So I may think I’m getting all the sleep I need, but the waking up interrupts the cycling of the different stages of sleep and then I start the cycles all over again.

WebMD at http://www.webmd.com/sleep-disorders/guide/sleep-101 tells us,

“During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds

bone and muscle, and appears to strengthen the immune system. As you get older, you

sleep more lightly and get less deep sleep. Aging is also associated with shorter time spans

of sleep, although studies show the amount of sleep needed doesn’t appear to diminish

   with age.”

Uh-oh, the deep stages of NREM (non-rapid eye movement) sleep are stages 3 and 4 which I may be missing by constantly waking up.  These are also the stages during which the body restores itself.

Emotions?  I can see that.  I dwell on the family’s medical problems, or someone I know and love who is out of work, or even my sweet Bella’s brush with cancer and I can get myself truly worked up.  So I don’t.  I mean I don’t think about these things at bedtime.  If I can’t seem to get them out of my head, I write a list of things to think about tomorrow.  As simplistic as it sounds, it works for me.  This is one piece of advice you don’t need to check with your nephrologist.

Wait a minute!  Who included my beloved caffeine on this list?????? This is where I get emotional.  Those two cups of caffeine a day are the only item on my renal diet that help me not feel deprived.  Okay, maybe we do need to be a bit rational about this (Don’t you just hate to be a grown up sometimes?).

This is what The National Sleep Foundation at http://sleepfoundation.org/sleep-topics/caffeine-and-sleep has to offer us about caffeine and sleep:

“Caffeine enters the bloodstream through the stomach and small intestine and can

have a stimulating effect as soon as 15 minutes after it is consumed. Once in the body,

caffeine will persist for several hours: it takes about 6 hours for one half of the caffeine

to be eliminated.”

Six hours for only half to be eliminated?  You mean, twelve hours for all of it to be eliminated?  I have got to stop drinking caffeine after noon. Okay, I can learn to live with that.  Heck, it’s better than no coffee at all.

Hopefully these suggestions will take care of my interrupted sleep problems.  Now what about yours?  Remember to speak with your nephrologist if you want to explore any of my suggestions.  As far as the emotions causing sleep problems, if my trick doesn’t work for you and you feel you need professional help with your emotions, please get it.

Here’s my last suggestion: buy a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before Moderate Stage Chronic Kidney Disease: The Book of Blogs is published. Then you’ll have the set of two.

Until next week,

Keep living your life!

Never NSAIDS

Never what?  One of the first rules we learn as Chronic Kidney Disease patients is never to take a NSAID, a non-steroidal anti-inflammatory drug.  Raise your hand if you remember why.  Hello fellow with the beard in the back of the room; what do you say?

Correct!  They further damage the kidneys.  Can you tell us how?  No?  Don’t feel bad.  Most people can’t, even those suffering from CKD.

What was that?  Oh, you want over the counter (non-prescription) names of some NSAIDS?  Sure.  Here’s a list courtesy of Nsaids-list at http://www.nsaids-list.com/:

• Aspirin (Aspirin is a brand name; the chemical is called acetylsalicylic acid)
• Celecoxib (Celebrex)
• Dexdetoprofen (Keral)
• Diclofenac (Voltaren, Cataflam, Voltaren-XR)
• Diflunisal (Dolobid)
• Etodolac (Lodine, Lodine XL)
• Etoricoxib (Algix)
• Fenoprofen (Fenopron, Nalfron)
• Firocoxib (Equioxx, Previcox)
• Flurbiprofen (Urbifen, Ansaid, Flurwood, Froben)
• Ibuprofen (Advil, Brufen, Motrin, Nurofen, Medipren, Nuprin)
• Indomethacin (Indocin, Indocin SR, Indocin IV)
• Ketoprofen (Actron, Orudis, Oruvail, Ketoflam)
• Ketorolac (Toradol, Sprix, Toradol IV/IM, Toradol IM)
• Licofelone (under development)
• Lornoxicam (Xefo)
• Loxoprofen (Loxonin, Loxomac, Oxeno)
• Lumiracoxib (Prexige)
• Meclofenamic acid (Meclomen)
• Mefenamic acid (Ponstel)
• Meloxicam (Movalis, Melox, Recoxa, Mobic)
• Nabumetone (Relafen)
• Naproxen (Aleve, Anaprox, Midol Extended Relief, Naprosyn, Naprelan)
• Nimesulide (Sulide, Nimalox, Mesulid)
• Oxaporozin (Daypro, Dayrun, Duraprox)
• Parecoxib (Dynastat)
• Piroxicam (Feldene)
• Rofecoxib (Vioxx, Ceoxx, Ceeoxx)
• Salsalate (Mono-Gesic, Salflex, Disalcid, Salsitab)
• Sulindac (Clinoril)
• Tenoxicam (Mobiflex)
• Tolfenamic acid (Clotam Rapid, Tufnil)
• Valdecoxib (Bextra)

Yes, young lady in the third row. This is a bit more detailed a list than you’d expected? Okay, let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for a simple explanation of NSAID.  Please turn to page 134.  Those of you with digital copies of the book, search the phrase.  Everyone have it?

NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease,    sometimes irreversibly.

So now we’re back to the original question.  How do NSAIDS further damage our kidneys?

But first I want to tell you just how important it is not to take them by sharing an anecdote with you. The first year after my CKD diagnose, my nephrologist spent a great deal of his time trying to convince me that I had caused by own CKD by taking NSAIDS very, very often.  He might have been right with another patient, but I was never one to rely on medications.

I would rather have used natural means to relieve myself of pain.  I did have arthritis and usually walked off the pain.  As for headaches, I would do the darkened room, rub the temples, mute the electronics and – my magic – ask one of my daughters to kiss my forehead routine. (Class!  No snickering.  It worked for me.)

Yet, overuse of NSAIDS was so common a cause of CKD that this was the only cause my nephrologist could see.  A while after this, studies showed that aging kidneys will lose their filtering power at the rate of ½% per year.  He switched to this cause, which I could more readily accept.

Yes, yes, I know we were going to discuss how NSAIDS further damage the kidneys today.

By the way, as early as 1984, the National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483278/?page=2 published a journal article from the Canadian Medical Association Journal entitled Adverse effects of NSAIDs on renal function.

Why no, I’m not procrastinating at all.  Here’s the answer to today’s question.

I found this explanation at a site that’s new to me (http://www.empowher.com/wellness/content/what-nsaids-do-your-kidneys):

All NSAIDs work by blocking the action of cyclooxygenase (COX). This enzyme performs a key step in the synthesis of prostaglandins [ me here with a definition of this word from the freedictionary.com at  http://medical-dictionary.thefreedictionary.com/Prostaglandins – a group of potent hormonelike substances that produce a wide range of body responses such as changing capillary permeability, smooth muscle tone, clumping of platelets, and endocrine and exocrine functions. They are involved in the pain process of inflammation.], which produce many effects in the body. Two of the effects are pain and inflammation for injured tissue. Other effects include protection of the stomach and homeostasis (regulation) of kidney function. The COX enzyme comes in two forms, COX-1 and COX-2. For a while, it was thought that COX-2 produces the pain and inflammation prostaglandins, while COX-1 produces the protective and regulatory prostaglandins.

The underlining is mine. That’s right, NSAIDS interfere with the regulation of the kidney function.  How?  Another good question from the middle of the room.

According to the National Kidney Foundation at http://www.kidney.org/atoz/content/painMeds_Analgesics.cfm,

“…because they reduce the blood flow to the kidney.”

So now we need to know why blood flow to the kidneys is important for CKD patients.

If you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.

Reduce the blood flow and you’re exacerbating the problem you already have… and all you need to do is avoid NSAIDS to avoid this problem. You’re right, class, that’s not exactly true, but it will help you preserve more of your kidney function.

Any questions for me?  For each other?

Well then, thank you for being such a willing and involved group of students.

While we all know this isn’t really a classroom and I’m not a doctor, this should answer a great many of the questions I’ve received via email or comments.

I’m also looking for first source research on both chia seeds and Goji Berries for a reader.  It seems there’s quite a bit of conflicting information about the safety of these two for CKD patients.  Please send along what you have, but first source only (not opinion, but fact).

It’s been my pleasure, folks.

Until next week,

Keep living your life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!  

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

• A to Z Health Guide
• About Chronic Kidney Disease
• Ask the Doctor
• How Your Kidneys Work
• Three Simple Tests to Check for Kidney Disease
• Recently Diagnosed
• KEEP Healthy – Free Kidney Health checks
• Kidney Quiz
• Rate Your Risk Quiz

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov 

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

• Home
• What is Kidney Disease
• Treatment
• Lifestyle
• Resources
• Health Care Professionals
• Glossary
• Change Language
• Site Map

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13^th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4^th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

Just Breathe

I was in Culver City, California, at a Landmark two day class this past weekend, so this blog was written before I left.  During these weekends, there’s very little free time which means I would have had to spend all Monday morning writing the blog… with a laptop that’s died at least three times already.

Rather than take that chance, I wrote this late Thursday night, since I flew to California on Friday and wouldn’t return until Wednesday. There were relatives to see there and sight-seeing, too.  Sony has a studio with sound stages there (first called Columbia Studio) and, as a recently officially retired actor, I found that too enticing to pass up. There’s a lot more to the studio’s story, but it doesn’t belong in a blog about CKD – unfortunately for me.

Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart above is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t means the other effects should be ignored.

In order to combat these problems, to say nothing of the rare risk of death due to not breathing, I wear something called a mandibular advancement device (MAD).  I know it sounds like my writing, but I did not make up that acronym.  Honest! The picture is very similar to the one I wear nightly. (I am not promoting that particular brand; it was just the best picture I could find.)

I didn’t want a Continuous Positive Airway Pressure machine  or CPAP, as it is commonly called, because I don’t like the idea of being tethered to anything – the same reason I am doing everything in my power NOT to get to the point when I need dialysis.

I didn’t want surgery because of the drugs involved.  I’m down to 48% kidney function, so I’d rather keep anything I haven’t checked previously out of my body. Last time I had surgery, before the operation, I asked for and was given a list of the drugs to be used.  I checked each with my nephrologist, but then – without advance warning – different drugs were used during surgery.

There’s a little more than meets the eye to keeping your oral (mouth) airways open at night. I love that play on words.  Back to serious:  the picture below shows how the MAD forces your airway open by advancing your lower jaw or mandibular.  A really nice by product is that you don’t snore anymore, either.

A dentist who is a sleep apnea specialist needs to monitor your progress.  When I first started, I was having so many episodes of sleep apnea (which means you stop breathing) that it was dangerous.  And here I’d thought I was just a noisy sleeper.

This specialty dentist advanced the metal bars holding the top and bottom of the device together so that my lower jaw was moved further and further forward while I slept and my airway opened more and more. I also used the same rubber bands people who wear braces use. I use them to keep my mouth pretty much closed.

While I am out of the danger range, I am still having those episodes  of apnea so I keep driving from my home to Tempe (between an hour and an hour and a half each way depending on the traffic) to have the device checked and adjusted every few months. This specialty dentist, the only one in the Valley of the Sun, then loans me a machine to measure the extent of my sleep apnea and the effectiveness of my MAD.

But that’s not all.  Since the mandibular is forced forward – good to open the airways, not so good for the muscles in the jaw – I also wear a retainer about half an hour after I remove, polish, and rinse the MAD.  This retainer stays in my mouth for about 15 minutes, but I need to physically push the mandibular back in place so that my lower teeth can meet the retainer on my upper teeth.  Result: I can’t talk. (I think Bear really likes this part of the treatment for my Obstructive Sleep Apnea.) Then this has to be brushed and dried, too.

In addition, I use a little machine that looks just like a jewelry cleaning machine in which I place a denture cleaning tablet once a week because there usually is some kind of buildup on the MAD.

This is quite a bit of work (adding to my daily routine of exercise, wearing hand braces at night, putting drops in my poor little macular degeneration suffering eyes… can I get a little sympathy here?), but well worth it.  I am not only saving my life, I’m saving my kidneys… and my heart… and my liver, according to the latest medical discoveries.

The down side?  Well, if I open my mouth while I’m wearing the MAD, I drool. I can hear Bear clapping now: more  silence from me. I could also risk stretching my jaw muscles if I don’t use the morning retainer.  Not using the retainer could result in a small, but permanent, shifting of my teeth as well.  And there is pain when I first take out the MAD.  Maybe I should write discomfort or minimal pain instead.

If you snore, get checked for sleep apnea.  Many people just don’t know they have it and, YES, it could be life threatening.

Did you see today’s (meaning Monday) Wall Street Journal.  In ‘Encore,’ Laura Landro wrote about SlowItDown and me.  I haven’t read it yet, but will be sure to post a link to it on WhatHowEarlyCKD and SlowItDown’s Facebook pages and Twitter accounts.  If you haven’t liked either of the Facebook pages, why not take a look at each of them and do it now?

Again, please be leery of Campusbookrentals.com and Chegg.com which are both attempting to rent What Is It And How Did I Get It? Early Stage Chronic  Kidney Disease for short periods at prices that are higher (for one of them, double) than that of the book.   Make use of the KindleMatchBook deep discount instead.

I’d discovered a place marker as well as the book cover on Amazon’s French site so I wrote them an email requesting they remove the place marker.  They removed both.  I think I’d better brush up on my French.

Until next week,

Keep living your life!

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

Testing…One…Two…Three…

On your mark, get set, test!  Or not.  It all depends upon which news articles you’ve been reading lately.  You’d think it was a no brainer to automatically test for Chronic Kidney Disease when 60% of the U.S. population is at risk and more than 28,000 of those that do have the disease don’t know they have it. That’s what you’d think, but not necessarily what your doctors think.

Then there’s the matter of so what?  That’s what I call reporting test results, but not acting upon them.  According to The Clinical Journal of the American Society of Nephrology (CJASN) at http://cjasn.asnjournals.org/content/early/2013/10/31/CJN.02490213.short?rss=1,

“Automated eGFR laboratory reporting improved documentation of CKD diagnoses but had no effect on nephrology consultation. These findings suggest that to advance CKD care, further strategies are needed to ensure appropriate follow-up evaluation to confirm and effectively evaluate CKD.”

That was more than a year ago.  So much has happened since then.

Yet, MedlinePlus, A service of the U.S. National Library of Medicine,  National Institutes of Health at  http://www.nlm.nih.gov/medlineplus/news/fullstory_141748.html posted an article from the American College of Physicians (ACP) which firmly suggests NOT routinely testing symptom free patients who have no risk factors while, at the same time, suggesting different methods for treating different symptoms  at different stages.  For the only time I can remember, I ended up sitting in my office chair staring at my computer screen scratching my head in confusion after reading an article on this site.  How can you treat what you don’t know you have since you haven’t been tested for it? To make matters worse, most of the early stage of CKD ARE symptom free. In this October, 2013, report, I found the following statement:

“There is no evidence that evaluated the benefits of screening for stage 1-3 chronic kidney disease,” ACP president Dr. Molly Cooke, said in a news release issued by the group. “The potential harms of all the screening tests — false positives, disease labeling, and unnecessary treatment and associated adverse effects — outweigh the benefits.”

Wait a minute here, folks.  I was diagnosed at stage 3 and have spent the last five years battling to stay in stage 3.  Don’t you think I’d rather be battling to stay in stage 1?  Or even stage 2?  You’ve got it backwards, Dr. Cooke.  I’d rather deal with the labeling, the chance of a false positive, etc. and have caught this disease earlier so it never got to stage 3. I like living more than I do being label free, ma’am.

Now for the other side of the coin.  That same month, the American Society of Nephrologists (ASN) – which, come to think of it, is the first group whose articles I started reading when I considered writing a weekly blog – came out in support of routine testing calling CKD “a silent killer.” This is more to my liking.  They talked about the chance to slow down, or perhaps even stop,  the  progression of the illness once you know you have it  and the fact that the procedure is not only lifesaving, but low  cost. (I’ve already spoken with some readers about this and they thought the cost might have been prohibitive.) You can read the article for yourself at http://newswise.com/articles/asn-emphasizes-need-for-early-detection-of-kidney-disease-a-silent-killer-in-the-u-s.

The National Kidney Foundation spokesman, Dr. Leslie Spry, had some interesting things to say about CKD in his Sept. 2013 blog in the Huffington Post:

“We, as a society, need to take kidney disease — which kills more Americans than breast cancer and prostate cancer combined — seriously, or the human and financial costs may become unbearable.”

He was referring to both the approximately $60 billion dollars the government spends on treating CKD annually and the need for those over 60 to be routinely tested.  The address for this particular blog of his is http://www.huffingtonpost.com/leslie-spry-md-facp/kidney-disease_b_3860079.html

According to Dr. Spry, too many people think of CKD as just something that happens as you grow older.  I know I didn’t.  Actually, I hadn’t yet realized I was growing older.  It was happening, but I wasn’t paying any attention.  It was the CKD – something I’d never heard of until I was diagnosed – that drove that fact home to me.

The whole purpose of the book, the blog, the Facebook page, and the tweets for both What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and SlowItDown is to inform people about testing for CKD, and then becoming educated about the disease.  Read the book, look at the Facebook pages and grab some of those daily tweets.  You don’t need to be shocked out of your socks at age 60 with the news that you have some disease you never heard of that may threaten your life like someone very close to me was. (Uh, so close we live in the same skin.)

Talking about the book, Amazon.com has come up with a deal I really like as a way of getting the word about CKD out to those who need it even more quickly. When you order a print copy of the book from Amazon, you can also buy the digital edition for $2.99. You get two for not much more than the price of one.  And don’t forget that you can share your Kindle books.  Amazon has been a pleasure to deal with from day one.

Oh, look at the date!  Tomorrow evening – from 5:30 to 8:30 – SlowItDown will be participating in the Health Fair in the Salt River Pima – Maricopa Indian Community.  It is open to the public, so feel free to meet us there.

For those of you who have texted, called, and messaged about Bear’s surgery, thank you again and again.  While he still cannot bear weight on the foot – even with his glow green in dark non-weight bearing cast – he is getting so good with the knee scooter that one of our almost sons-in-law was able to take him over to Rockler’s (the wood working shop where Bear works part time) and then to dine at Claim Jumper’s on Saturday.  While the excursion wiped out his energy for the next couple of days, Bear was a happy man.  Thank you, Sean.  Lara and Alex, your coming over so often has kept Dad’s spirits up  more than you know.

Until next week,

Keep living your life!

Stop It Before It Starts

First things first: thank you to Bear and every other veteran – living or not – for the sacrifices you made for the rest of us.  I wasn’t quite sure I believed in the military until I watched the attacks on 9/11… while my children were in the city.  Then I knew.  That day, soldiers and police officers became the most respected people in my world. It’s been close to a dozen years, but I still find myself weeping when I think of it.  If this is post traumatic stress for me, what is it like for our returning soldiers?

There is no way to slide into a blog from that so I won’t. There was a question on What Is It And How Did I Get It? Early Stage Chronic Kidney Disease‘s Facebook page ( https://www.facebook.com/WhatHowearlyCKD) about the inoculations that are suggested for those who have Chronic Kidney Disease.

Before we even get to the different kinds of inoculations, why do we need any in the first place?  According to http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837:

“Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.”

I have been on bed rest for several days, ever since I showed up at my primary care physician’s office for my Hepatitis-B vaccine and was told I’d have to come back for that at a later date.  I either had pneumonia or bronchitis. I didn’t know.  I thought I’d just been pushing my physical limits and needed to take some time off. Why mention that here?  Consider it proof that our immune systems become weaker with CKD.

I clearly remember (because it was only a few years ago), becoming sick for only a day at a time.   Then I noticed that maybe once a year I’d end up with the flu which had me down for about ten days.  This year, it’s been ten days with the flu, ten days with sinusitis, and now whatever this is.  You know I’ll be running to Dr. Zhao’s office for the inoculations as soon as my lungs are clear!

Now that I’ve convinced you they’re necessary, what are the inoculations?  There are three that DaVita suggests. The first, as mentioned, is Hepatitis-B. Let’s go back a little bit and define the disease. “Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver. ” That’s what the Mayo Clinic has to say about it.  You can read more at:  http://www.mayoclinic.com/health/medical/IM02250.

A Hepatitis-B infection may lead to kidney failure. What’s worse is that some adults never exhibit the symptoms of this disease.  Your kidneys are already compromised, as is your immune system. To the best of my knowledge, the drugs to treat Hepatitis-B may also adversely affect the kidneys.

Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection,  kidney function can be further reduced. The liver also filters toxins and drugs from the blood.

The liver performs quite a few of the metabolic functions necessary to keep you alive, much less healthy, certain of which affect the kidneys. Metabolic means the “chemical processes occurring within a living cell or organism that are necessary for the maintenance of life,”  according to www.thefreedictionary.com. If your kidneys are already compromised and then your liver is, what happens to your blood pressure and blood sugars without any kind of regulation?  I know I’m already having problems with both and don’t need any more. This much I knew.

As I researched, I discovered that the liver also converts blood ammonia – which is toxic –  into urea. Remember the kidneys turn urea into urine and that the amount of urea directly affects our kidney function.  What I didn’t know is that Hepatitis-B is one of the infections that can inflame  the glomeruli.  These are the parts of the kidneys that do the filtering.

I’m sure you’ve all heard of cirrhosis of the liver.  Guess what.  It can lead to kidney failure.  Get the vaccine!

I’ve spent most of the blog on the Hepatitis-B because it’s relatively new and I, for one, didn’t know much about it.  I’ve already written several blogs about the flu vaccine, so I’ll just add this tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc.”

• Cardiovascular disease is the leading cause of death among patients with CKD
•  Infectious diseases are the Infectious diseases are the second most common cause of death among cause of death among patients with CKD

That statement speaks for itself.

Ah, now the third vaccination: Pneumococcal.  Sounds terrible, but it’s really just the pneumonia inoculation. MedicineNet at http://www.medicinenet.com/pneumococcal_vaccination/article.htm#who_should_consider_pneumococcal_vaccination  tells us this is,

” a method of preventing a specific type of lung infection (pneumonia) that is caused by pneumococcus bacterium. There are more than 80 different types of pneumococcus bacteria — 23 of them covered by the vaccine. The vaccine is injected into the body to stimulate the normal immune system to produce antibodies that are directed against pneumococcus bacteria.”

Naturally, the next question is why CKD patients? Dr. Joseph A. Vassalotti, Chief Medical Officer of the National Kidney Foundation and Dr. William Schaffner, President of the National Foundation for Infectious Diseases have explained it better than I ever could:

“One reason people with CKD are at greater risk for pneumococcal disease is because kidney disease can weaken the immune system and make the body more susceptible to infection.

2 Doctors and researchers have found that infections in people with CKD such as those caused by pneumococcal disease are worse and can be more serious than in people who don’t have CKD.

3 In some people, infection can cause death.”

You can read more about that at: http://www.kidney.org/atoz/content/Pneumococcal.cfm

It’s time for me to crawl back into bed.

Until next week,

Keep living your life!

The Less Than Sexy Sinuses

Happy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at http://www.nlm.nih.gov/medlineplus/sinusitis.html,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

Back to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

“Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.”

You can read more at: http://www.mayoclinic.com/health/acute-sinusitis/DS00170.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

Acute  – extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic  – medication used to treat infection.

Chronic  –  Long term, the opposite of acute.

Chronic Kidney Disease – damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at: http://www.essortment.com/prevent-sinus-infection-62926.html, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

This is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

None of This Matters

Household tips I have learned via prepping the house for the wedding:                                                                

1. Contact paper works well on bathroom windows for privacy.
2. Adhesive white board paper makes a good privacy screen on the shower door.
3. Trees and bushes cut back due to frost damage do grow back quickly.
4. Things break at the absolutely worst time: dishwasher, solar water heating panel, a/c.
5. None of this matters.

The most important one is #5.  We are preparing for one of the most special days for us – our wedding – and we’ll be married whether we discovered these things or not.

But I may not have been here for my wedding day if my Chronic Kidney Disease had not been discovered.  Once it was, I was given the tools to retard its progression and seemingly reverse it at times.

An even earlier discovery of my ckd would probably have been better. Okay, so I was seeing a Physician’s Assistant who wasn’t all that astute.  The readings were right there in my blood tests almost a year before I changed to a primary care doctor who actually cared.  I really liked the P.A. who had been taking care of me, but learned that liking a person doesn’t necessarily mean she is a good medical practitioner.

There are so many ifs here: If I had known earlier, could I have made sure my eGFR (estimated Glomerular Filtration Rate) didn’t dip as low as it was when I was finally diagnosed? If I had been seeing a doctor rather than a P.A. would she have caught the ckd earlier?  If the blood tests had been read carefully, would I have had the opportunity to get to work on preventing rapid progression in the decline of my kidneys?

I will never know the answers to those questions, so – as #5 says – none of this matters … for me.  For you?  That’s another story.

Have you ever heard of KEEP?  That’s the Kidney Early Evaluation Program.  Notice the word ‘Early’ in the title. With ckd, the earlier you can detect the disease, the better. According to the National Kidney Foundation:

                            The goals of KEEP are to:

• Raise awareness about kidney disease especially among “high risk” individuals
• Provide free testing for people at increased risk for kidney disease
• Encourage people “at risk” to visit a clinician and follow the treatment plan recommended
• Provide educational information so that “at risk” individuals can prevent or delay kidney damage
• Provide  clinician referrals for follow-up care, if needed
• Provide ongoing information and support

You can read more about the program at: http://www.kidney.org/news/keep/KEEPabout.cfm

The KEEP Program is for all people, but the ‘high risk’ ones are the ones that may need to take immediate action.  What is ‘high risk’ you ask?

According to The National Kidney Center at: http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/  these are the high risk people:

“High risk groups for chronic kidney disease (CKD) include those with diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are also at increased risk.”

That definition covers quite a bit of ground.  For example, I have hypertension (high blood pressure) and am a Senior (Thank you for the capital letter, National Kidney Center!).  I don’t know if there’s any history of kidney disease in my family since the cousins my age don’t know of any, but our parents would never discuss their health with us.

Alright, so we need early detection.  Now, where can you find that?  On the home page of The National Kidney Foundation, there is an orange bar running across the page.  It has different pages on it. Hit the one that reads “Events.” Once you get to that page, scroll down and you’ll see the words, “Find a KEEP Screening Near You.”  Hit it. Voila!  You’ve found your local KEEP Screening.

The logical question here is, “What if there isn’t one near me?”  You don’t have to travel across state lines to find out if you have CKD.  Speak with your pcp (primary care doctor) and ask him or her to run a blood test and a urine test. While the results may not be crystal clear to a doctor who is not a nephrologist (kidney and hypertension specialist), high or low readings will be marked.  They will let your pcp know there may be a kidney function problem.

The National Kidney Disease Education Program at The U.S. Department of Health and Human Services at http://www.nkdep.nih.gov/resources/kidney-disease-mean-for-me.shtml#results provides the following information and a really nifty diagram of reduced function kidneys for you:

1. A blood test checks your GFR, which tells how well your kidneys are filtering. GFR stands for glomerular filtration rate.

2. A urine test checks for albumin. Albumin is a protein that can pass into the urine when the kidneys are damaged. See picture below.

If necessary, meaning if your kidney function is compromised, your pcp will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

Creatinine –

Creatinine is a breakdown product of creatine, which is an important part of muscle

Urine:

Creatinine clearance

The creatinine clearance test compares the level of creatinine in urine with the creatinine level in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle.

Thank you to MedLine Plus, part of the U.S. National Library of Medicine,  National Institutes of Health at http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm for the above information about the blood and urine tests.

Well if this blog isn’t enough to get you to check your kidney function, I just don’t know what is.

Before I leave, European sales of the book are surpassing those of U.S. sales.  I don’t know if that means we have more access to specialists and information here or that Europeans are reading more. Do let me know if there is a practice that needs a book donated to it or needs books to use as prizes or give-aways at patient education sessions.

I’m forgetting the world outside of wedding prep and CKD!  Guten Pesach to those who celebrate Passover, which started last night, and a Happy Easter to those who will be celebrating that on Sunday.

Until next week,

Keep living your life!

Frustrated and Wondering

You’ve seen it all over the book’s Facebook page and on Twitter.  Yesterday was my birthday, my 66^th birthday to be exact.  “I feel good.  I knew that I would,” as James Brown sings when someone calls me.  But what does my, uh, advanced age mean to my kidneys?

According to my nephrologist, I would lose 1/2 % of my kidney function each year since I was older.  Interesting… and wrong.  I’ve gained between 9 and 21 points on my GFR in the last five years.  It does vary depending on numerous factors: diet, sleep, exercise, stress, illness.

I had my blood drawn two weeks ago and the results told me that my GFR was 52, down from the 64 it had been only three months before. My primary care doctor told me not to worry about this lower number since I had clearly been incubating the flu at the time of the draw.

Here’s something you haven’t heard from me in a while (she wrote tongue in cheek): that got me to thinking.  What do illness – other than chronic kidney disease – and age have to do with your Glomerular Filtration Rate, a widely accepted indication of just how well your kidneys are functioning?

I found the following chart on The National Kidney Foundation’s website at http://www.kidney.org/professionals/kls/pdf/12-10-4004_KBB_FAQs_AboutGFR-1.pdf

      Average Measured GFR by Age in People Without CKD 

AGE  (Years)                   Average Measured GFR (mL/min/1.73 m2)

20-29                                                      116

30-39                                                      107

40-40                                                        99

50-59                                                        93

60-69                                                        85

70+                                                           75

Notice this is for people without CKD.   Now I’m not a mathematician, as we all know, but if those without our disease lose almost ten points of their GFR each decade they age, why am I not surprised that we who do have Chronic Kidney Disease are expected to be lose the same number of points?

By the way, that does take into account the 1/2% a year I would be losing on my GFR – according to my nephrologist – due to age.  But it’s just not happening.

This is a good place to mention that a reader was infuriated that her nephrologist never told her to double her rate to see where she was on the charts.  She previously had a kidney removed due to cancer and was living with one kidney.

Until she was given that information, she thought she should be on par with those living with two kidneys and was aghast as how low her GFR was.  I can see where her ire would rise (as well as her blood pressure from all that unnecessary worry).

I have been researching for hours and the only answers I’ve found to the question of how the flu affected my GFR were on forums or pay-an-expert-for-a-medical-answer sites.

Sorry, folks, I just don’t trust them.  I will be seeing my nephrologist this week and will make it a point to ask him.

When I had the flu, my nephrologist told me to go right ahead and take the over the counter medications my primary physician had suggested and in the dosages recommended on the labels.  He did caution that I not take anything with the letter  ‘d’ in the name since that might raise my blood pressure.

Here’s what DaVita at http://www1.davita.com/3617 has to say about that:

When the flu season hits, the use of treatments for cold and flu soars. These medications often include compounds that can intensify

hypertension and salt retention. Should you require a product to treat cold and/or flu symptoms, it is strongly recommended that you

take them as prescribed by your doctor and carefully read the package instructions.

Notice we still don’t know if the flu affects the GFR.  Although, logically, if hypertension (high blood pressure) affects your kidneys and these medications may raise your blood pressure… perhaps that means they lower your GFR?

These are the kinds of questions that sent me running to interview different nephrologists, rather than trying to research my answers on the internet, when I was writing the book.

Attempting to research these questions brought me to this chart on the site of The National Kidney Disease Education Program – which is a part of The U.S. Department Of Health And Human Services – at http://www.nkdep.nih.gov/learn/testing/understand-gfr.shtml.

I have included it here due to its clarity.  Seeing numbers written doesn’t always make it obvious just what the guidelines are, especially for those of us who think we’re not that good at math.

I certainly do not mean to beg the issue, but I’m getting nowhere looking for definitive answers as to how my age and any other illness such as the flu affect CKD.

We can all see how age and illness affect us as far as appearance, physical use of our body, and even shrinkage (Proof: I am ½ inch shorter due to the compression of the discs between my vertebrae), as well as the coughing, sneezing, and body aches of the flu.

Apparently, you have to be a doctor, or have the vocabulary of one, to be able to understand the connection of these conditions to your GFR.

On another note, The Southwest Nephrology Conference is on March 1 & 2 at Wild Horse Pass Hotel and Resort in Chandler.  That is simply too close to ignore.  I am thinking about going to meet all the specialists I’ve corresponded with from different parts of the country in person.

Could I interest any of you in joining me?  You can read more information about the conference at http://swnc.org/

I keep forgetting to mention the book!  Since I no longer do book signings or book talks, the only way to get the information out there is for you to buy books for your friends and family.

Hey!  I’m donating as fast as I can! (Wait until my accountant hears about that.)

Until next week,

Keep living your life!

Back To Basics

My daughter Abby and I just spent the weekend at Landmark Education’s Access to Communication Course.  If I weren’t already a Landmark graduate, I’d say I couldn’t believe what I learned.  Since I am a Landmark graduate, I’ll share with you my delight at learning just how simple and loving communication can be.

Of course, I’d urge you graduates reading this blog to register for this course and those of you who aren’t yet graduates to explore the Landmark Forum.  You might get an idea of how forceful this work is when I tell you that my upcoming marriage is a result of it.

As a matter of fact, there’s an introduction this Wednesday night at the Scottsdale center from 7 – 11.  The address is 16100 North Greenway-Hayden Loop, Suite 108, and the phone number is 602-222-1110. You can always contact me and we can go together.

I chose communication about CKD as the topic for this week’s blog because I have been doing just that… and being startled over and over again at the number of people I’ve spoken with that know nothing about Chronic Kidney Disease.  So, this week, we go back to basics.

Anyone know what the kidneys are and what they do?  Will the gentleman with his hand raised in the back of the room answer the question, please?  Oh, it’s my future son-in-law, Sean, and he’s quoting me!

On page 1 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, Gail Rae wrote, “Later, I learned that the kidneys were two reddish brown organs which lay on the muscles of the back on either side of your spine above hipbone level and below the diaphragm… Some have compared their size to that of a clenched fist or a large computer mouse, and the right one lies lower than the left since the liver is on that side.” [You can order digital copies of the book at Amazon.com and B&N.com.  Print copies are available at Amazon.com and myckdexperience@gmail.com.]

I couldn’t have said it better myself.  [ Ha Ha. Get it?  I DID say it.] Now about their function… Ah, lady on the left side of the room. Estelle, my dear East Coast buddy, I didn’t know you were here.

According to The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/#kidneys, “Every day, a person’s kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.” Nice job!

What else do they do?  Nima?  Yes, you may answer questions even though you’re my daughter.  Well then:

• Control your body’s chemical balance
• Help control your blood pressure
• Help keep your bones healthy
• Help you make red blood cells

You’ve learned well.  What was your source?  The American Kidney Fund at http://www.kidneyfund.org/kidney-health/kidney-basics/your-kidneys.html.

That’s a good one, as are all the others mentioned here.  They each contain far more information than we’ve included in today’s blog and can make you a sort of neophyte kidney expert.  Well, maybe someone who knows about his/her early stage chronic kidney disease or that of someone you know and/or love might be a more realistic title.

More?  Okay.  How many people have chronic kidney disease?  Look there.  Lara, my step-daughter, who is in very good health (thank the powers that be) is here.  Ummm, I did tell you that number but it’s changed a bit since then.  It’s 26 million in the USA alone and raising.  Those are the diagnosed people.  There are millions of other who have not yet realized they have CKD according to The National Kidney Foundation at     http://www.kidney.org/kidneydisease/aboutckd.cfm#facts

How do you know if you have it?  Excellent question, Kelly. As another healthy person, my step-daughter has asked an important question. Since there are rarely symptoms, it’s all about blood and urine tests.  A simply stated E-how article at http://www.ehow.com/how_2051919_test-kidney-disease.html explains without overwhelming.  Basically, your doctor is looking for protein in your urine and at the following values in your blood test: GFR (glomerular filtration rate) and bun (blood urea nitrogen).  I don’t advocate eHow for medical information, but this one is not that bad.

I will, Bear, right now.  The wonderful man I’ll be marrying in April asked me to make certain I write about the renal diet.  He follows it with me so we don’t have to cook two different meals when we do cook and he lost 60 pounds in the first several months of doing so.  I could hate him for that, except that I already love him.

The renal diet is only one part of the treatment. [There’s also exercise, adequate sleep and lack of stress.] I thought the one at Buzzle (http://www.buzzle.com/articles/diet-for-chronic-kidney-disease-ckd.html) was a good example until I realized there was no potassium restriction on this diet.  I follow that of the Northern Arizona Council of Renal Dietitians. What this tells us is that you need to pay attention to the specific renal diet the nephrologist (kidney and high blood pressure expert) has given you or your loved one, friend, and/or co-worker.

Basically, sodium, phosphorous, protein, potassium and fluids are restricted. Sometimes, I feel like my fluids are exaggerated rather than restricted – like when I’m writing – and have to remind myself to drink so I can meet my 64 ounces/per day ‘limit.’

My neighbor and friend, Amy, just asked me to backtrack a bit and discuss the causes of CKD.  That would be helpful, wouldn’t it?

eMedicine at http://www.emedicinehealth.com/chronic_kidney_disease/page3_em.htmers this.  Two thirds of ckd is caused by high blood pressure or diabetes, but they neglected to mention that sometimes ckd is simply a result of growing older – as in my case.

You know the people I mentioned are not in my office as I write this blog, so here’s a public thank you to each of them for the loan of their names.  I kind of think they would have offered those answers or asked these questions if they were here with me right now.

Check out those websites.  They offer quite a bit of information.

Until next week,

Keep living your life!