Sodium Bicarbonate, Anyone?

I belong to a number of social media Chronic Kidney Disease support groups. Time and time again, I’ve seen questions about sodium bicarbonate use. I never quite understood the answers to members’ questions about this. It’s been years, folks. It’s time for me to get us some answers.

My first question was, “What is it used for in conjunction with CKD?” Renal & Urology News at https://www.renalandurologynews.com/home/conference-highlights/era-edta-congress/sodium-bicarbonate-for-metabolic-acidosis-slows-ckd-progression/ had a current response to this. Actually, it’s from last June 19th.

“Sodium bicarbonate treatment of metabolic acidosis in patients with chronic kidney disease (CKD) improves renal outcomes and survival, researchers reported at the 56th European Renal Association-European Dialysis and Transplant Association Congress in Budapest, Hungary.

In a prospective open-label study, patients with CKD and metabolic acidosis who took sodium bicarbonate (SB) tablets were less likely to experience a doubling of serum creatinine (the study’s primary end point), initiate renal replacement therapy (RRT), and death than those who received standard care (SC).”

It may be current but what does it mean? Let’s start with metabolic acidosis. Medline Plus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health at https://medlineplus.gov/ency/article/000335.htm explains it this way:

“Metabolic acidosis is a condition in which there is too much acid in the body fluids.”

But why is there “too much acid in the body fluid?”

I like the simply stated reason I found at Healthline (https://www.healthline.com/health/acidosis), the same site that deemed SlowItDownCKD among the Best Six Kidney Disease Blogs for 2016 and 2017.

“When your body fluids contain too much acid, it’s known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. Your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid accumulating in your body.”

In case you’ve forgotten, pH is the measure of how acid or alkaline your body is. So, it seems that when the kidneys (for one organ) don’t function well, you may end up with acidosis. Did you know the kidneys played a part in preventing metabolic acidosis? I didn’t.

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/263834.php in an attempt to find out if metabolic syndrome has any symptoms. By the way, AHA refers to the American Heart Association.

“According to the AHA, a doctor will often consider metabolic syndrome if a person has at least three of the following five symptoms:

  1. Central, visceral, abdominal obesity, specifically, a waist size of more than 40 inches in men and more than 35 inches in women
  2. Fasting blood glucose levels of 100 mg/dL or above
  3. Blood pressure of 130/85 mm/Hg or above
  4. Blood triglycerides levels of 150 mg/dL or higher
  5. High-density lipoprotein (HDL) cholesterol levels of 40 mg/dL or less for men and 50 mg/dL or less for women

Having three or more of these factors signifies a higher risk of cardiovascular diseases, such as heart attack or stroke, and type 2 diabetes.”

Well! Now we’re not just talking kidney (and lung) involvement, but possibly the heart and diabetes involvement. Who knew?

Of course, we want to prevent this, but how can we do that?

“You can’t always prevent metabolic acidosis, but there are things you can do to lessen the chance of it happening.

Drink plenty of water and non-alcoholic fluids. Your pee should be clear or pale yellow.

Limit alcohol. It can increase acid buildup. It can also dehydrate you.

Manage your diabetes, if you have it.

Follow directions when you take your medications.”

Thank you to WebMD at https://www.webmd.com/a-to-z-guides/what-is-metabolic-acidosis#2  for the above information.

Let’s say – hypothetically, of course – that you were one of the unlucky CKD patients to develop metabolic acidosis. How could you treat it?

I went directly to the National Kidney Foundation at https://www.kidney.org/atoz/content/metabolic-acidosis to find out. This is what they had to say:

“We all need bicarbonate (a form of carbon dioxide) in our blood. Low bicarbonate levels in the blood are a sign of metabolic acidosis.  It is a base, the opposite of acid, and can balance acid. It keeps our blood from becoming too acidic. Healthy kidneys help keep your bicarbonate levels in balance.  Low bicarbonate levels (less than 22 mmol/l) can also cause your kidney disease to get worse.   A small group of studies have shown that treatment with sodium bicarbonate or sodium citrate pills can help keep kidney disease from getting worse. However, you should not take sodium bicarbonate or sodium citrate pills unless your healthcare provider recommends it.”

I’m becoming a wee bit nervous now and I’d like to know when metabolic acidosis should start being treated if you, as a CKD (CKF) patient do develop it. Biomed at http://www.biomed.cas.cz/physiolres/pdf/prepress/1128.pdf reassured me a bit.

“Acid–base disorder is commonly observed in the course of CKF. Metabolic acidosis is noted in a majority of patients when GFR decreases to less than 20% to 25% of normal. The degree of acidosis approximately correlates with the severity of CKF and usually is more severe at a lower GFR…. Acidosis resulting from advanced renal insufficiency is called uremic acidosis. The level of GFR at which uremic acidosis develops varies depending on a multiplicity of factors. Endogenous acid production is an important factor, which in turn depends on the diet. Ingestion of vegetables and fruits results in net production of alkali, and therefore increased ingestion of these foods will tend to delay the appearance of metabolic acidosis in chronic renal failure. Diuretic therapy and hypokalemia, which tend to stimulate ammonia production, may delay the development of acidosis. The etiology of the renal disease also plays a role. In predominantly tubulointerstitial renal diseases, acidosis tends to develop earlier in the course of renal insufficiency than in predominantly glomerular diseases. In general, metabolic acidosis is rare when the GFR is greater than 25–20 ml/min (Oh et al. 2004).”

At least I understand why the sodium bicarbonate and I realize it’s not for me… yet.

Until next week,

Keep living your life!

Get the Lead Out

In case you haven’t heard yet, my youngest and her husband are having a little boy at the end of the month. I’ve noticed that, as millennials, their generation shares what they already have instead of running out to buy new as my generation – the baby boomers – did. One thing that was shared with them was a 16 year old crib in ace condition.

I thought it was painted white and got nervous about lead in the paint until I did a little digging. Luckily, the anti-lead paint laws came into existence 41 years ago in 1978.

Then I started to wonder what sustained lead exposure could do to someone with Chronic Kidney Disease and turned to one of my favorite sites to find out. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/lead-exposure-and-kidney-function,

“Having too much lead in your body can affect all the organs in your body, including the kidneys. When it affects your kidneys, medical experts call it ‘lead-related nephrotoxicity.’  (‘Nephro’ refers to your kidneys, and ‘toxicity’ refers to poison.’) Kidney damage from lead exposure is very uncommon in the United States.  In fact, most experts believe that kidney damage from lead is rare nowadays, especially in the United States and Europe.

It’s believed that lead exposure causes less than 1% of all cases of kidney failure.  It is usually related to jobs where workers are exposed to very high levels of lead, such as stained glass artists, metal smelters, and people who work in battery factories or remodel old homes. The low levels of lead found in drinking water, house paint, dirt, dust, or toys rarely causes kidney damage.

But if it does happen, it is usually only after many years of lead exposure (5 to 30 years).  Also, it is more likely to affect people who are already at risk for kidney disease, or those who already have kidney disease. In children, however, even mild exposure over many years can lead to health effects later in life, including kidney damage.”

Let’s say (Heaven forbid!) that you were among the “less than 1% of all cases of kidney failure” caused by lead exposure. How would you even know you had lead poisoning? The National Institute for Occupational Safety and Health (NIOSH), part of the Centers for Disease Control and Prevention (CDC) at  https://www.cdc.gov/niosh/topics/lead/health.html had an answer ready for us.

“Lead poisoning can happen if a person is exposed to very high levels of lead over a short period of time. When this happens, a person may feel:

  • Abdominal pain
  • Constipated
  • Tired
  • Headachy
  • Irritable
  • Loss of appetite
  • Memory loss
  • Pain or tingling in the hands and/or feet
  • Weak

Because these symptoms may occur slowly or may be caused by other things, lead poisoning can be easily overlooked. Exposure to high levels of lead may cause anemia, weakness, and kidney and brain damage. Very high lead exposure can cause death.

Lead can cross the placental barrier, which means pregnant women who are exposed to lead also expose their unborn child. Lead can damage a developing baby’s nervous system. Even low-level lead exposures in developing babies have been found to affect behavior and intelligence. Lead exposure can cause miscarriage, stillbirths, and infertility (in both men and women).

Generally, lead affects children more than it does adults. Children tend to show signs of severe lead toxicity at lower levels than adults. Lead poisoning has occurred in children whose parent(s) accidentally brought home lead dust on their clothing. Neurological effects and mental retardation have also occurred in children whose parent(s) may have job-related lead exposure.…”

Did you catch the mention of kidney disease? Now what? How is lead poisoning treated? Let’s see what another favorite site of mine, The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/lead-poisoning/diagnosis-treatment/drc-20354723   has to say:

“The first step in treating lead poisoning is to remove the source of the contamination. If you can’t remove lead from your environment, you might be able to reduce the likelihood that it will cause problems. For instance, sometimes it’s better to seal in rather than remove old lead paint. Your local health department can recommend ways to identify and reduce lead in your home and community. For children and adults with relatively low lead levels, simply avoiding exposure to lead might be enough to reduce blood lead levels.

Treating higher levels For more-severe cases, your doctor might recommend:

  • Chelation therapy. In this treatment, a medication given by mouth binds with the lead so that it’s excreted in urine. Chelation therapy might be recommended for children with a blood level of 45 mcg/dL or greater and adults with high blood levels of lead or symptoms of lead poisoning.
  • EDTA chelation therapy. Doctors treat adults with lead levels greater than 45 mcg/dL of blood and children who can’t tolerate the drug used in conventional chelation therapy most commonly with a chemical called calcium disodium ethylenediaminetetraacetic acid (EDTA). EDTA is given by injection.”

Is that safe for your kidneys? Uh-oh, according to WebMD at https://www.webmd.com/balance/guide/what-is-chelation-therapy, it may not be.

“When chelation therapy is used the right way and for the right reason, it can be safe. The most common side effect is burning in the area where you get the IV. You might also experience fever, headache, and nausea or vomiting. Chelating drugs can bind to and remove some metals your body needs, like calcium, copper, and zinc. This can lead to a deficiency in these important substances. Some people who’ve had chelation therapy also have low calcium levels in the blood and kidney damage.”

It looks like this is another case when you’ll have to present the information to your nephrologist and see what he or she advises in your particular case. If it’s a primary care doctor who is treating you for lead poisoning, be certain to tell him or her that you CKD.

Until next week,

Keep living your life!

It’s Like the Sahara in There

I like my dentist, especially when he tells me something I didn’t know. When I went to see him last time, I told him my chemo experience and how dry my mouth was. I thought they might be related. He patiently gave me the same information as the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/dry-mouth/symptoms-causes/syc-20356048.

“Dry mouth, or xerostomia (zeer-o-STOE-me-uh), refers to a condition in which the salivary glands in your mouth don’t make enough saliva to keep your mouth wet. Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.

Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

Decreased saliva and dry mouth can range from being merely a nuisance to something that has a major impact on your general health and the health of your teeth and gums, as well as your appetite and enjoyment of food.

Treatment for dry mouth depends on the cause.”

The joke’s on me. I developed dry mouth before the radiation treatments began. At least my salivary glands weren’t having any issues of their own. It seems we discussed xerostomia at the right time.

Wait a minute. Something is pulling on my memory. Something about Chronic Kidney Disease and dry mouth. Of course, periodontics and CKD. The Journal Of Clinical Periodontology at https://onlinelibrary.wiley.com/action/doSearch?AllField=chronic+kidney+disease&SeriesKey=1600051x had just what I was trying to remember. By the way, this is a fascinating free online library by John Wiley, a publisher I remember well from when I worked as an educator.

“Periodontitis had significant direct effect, and indirect effect through diabetes, on the incidence of CKD. Awareness about systemic morbidities from periodontitis should be emphasized.”

In other words, if you have CKD or diabetes, make certain your dentist knows so he or she can monitor you for the beginning of periodontic problems. Just as with any other medical issue, the sooner you start treatment, the better. I can attest to this since I caught my pancreatic cancer early, which gave me a much better chance of eradicating it from my body.

The treatment for dry mouth seems simple enough, as explained by Healthline (Thank you again for the two awards!) at https://www.healthline.com/symptom/dry-mouth.

“Dry mouth is usually a temporary and treatable condition. In most cases, you can prevent and relieve symptoms of dry mouth by doing one or more of the following:

  • sipping water often
  • sucking on ice cubes
  • avoiding alcohol, caffeine, and tobacco
  • limiting your salt and sugar intake
  • using a humidifier in your bedroom when you sleep
  • taking over-the-counter saliva substitutes
  • chewing sugarless gum or sucking on sugarless hard candy
  • over- the-counter toothpastes, rinses, and mints

If your dry mouth is caused by an underlying health condition, you may require additional treatment. Ask your doctor for more information about your specific condition, treatment options, and long-term outlook.”

The sugarless gum works well for me and, as an added benefit, quelled the nausea from the radiation treatments, too. While I don’t drink or smoke, I will have an occasional half cup of coffee when I can tolerate it. I didn’t know this was something to be avoided. As both a CKD patient and a type 2 diabetic (Thanks, pancreatic cancer.), I was already avoiding salt and sugar. So, without realizing it, I was already helping myself deal with dry mouth. Lucky me.

That got me to thinking. What other problems could dry mouth cause? I went to NHS Inform at https://www.nhsinform.scot/illnesses-and-conditions/mouth/dry-mouth to look for an answer. Indeed, this is a Scottish website, but a mouth is a mouth no matter where it’s located, right?

  • “a burning sensation or soreness in your mouth
  • dry lips
  • bad breath (halitosis)
  • a decreased or altered sense of taste
  • recurrent mouth infections, such as oral thrush
  • tooth decay and gum disease
  • difficulty speaking, eating or swallowing”

On a personal note, I found the halitosis embarrassing and the altered sense of taste frustrating. And here, I’d been blaming the chemo for that. Maybe it was the chemo, although my age could also be the cause of my dry mouth. I do admit that 72 could be considered “aging.” My husband orders the groceries and we now have a pantry full of food I used to love but all taste, well, funny now. Poor guy, he was just trying to get me to eat when he ordered the food. He knew calorie intake is important when you’re dealing with cancer.

I wondered what the symptoms of dry mouth were… well, other than a dry mouth, that is.

“Common symptoms include:

  • A sticky, dry feeling in the mouth
  • Frequent thirst
  • Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
  • A dry feeling in the throat
  • A burning or tingling sensation in the mouth and especially on the tongue
  • A dry, red, raw tongue
  • Problems speaking or trouble tasting, chewing, and swallowing
  • Hoarseness, dry nasal passages, sore throat
  • Bad breath

Thank you to WebMD at https://www.webmd.com/oral-health/guide/dental-health-dry-mouth#1 for the above information.

Will you look at that! Just as diabetes can cause CKD and CKD can cause diabetes, bad breath (halitosis), soreness or burning sensation in the mouth can both be symptoms of dry mouth and problems caused by dry mouth.

Let’s see now. What else can I tell you about dry mouth? DentistryIQ at https://www.dentistryiq.com/clinical/oral-cancer/article/16356305/facts-about-dry-mouth is a new site for me. They describe themselves as “… a leading source of information that helps dental professionals achieve excellence in their positions, whether that position is dentist, dental practice owner, dental hygienist, dental office manager, dental assistant, or dental school student.” I went there to find out just how many people suffer from dry mouth.

“It is estimated to affect millions of people in the United States, particularly women and the elderly…. Current research indicates that approximately one in four adults suffer from dry mouth, and this figure increases to 40 percent in populations over the age of 55….”

This was back in 2006, and unfortunately are the most current figures I could find. Please let us know if you can find more current numbers.

Personal note: Tomorrow I will be having surgery to remove the pancreatic cancerous tumor I’ve been dealing with since last February. The blogs will be posted right on time, but comments, emails, etc. probably won’t be answered for a while. I’ve been told this is an arduous surgery with a long, slow recovery period. Keep well until we can communicate again.

Until next week,

Keep living your life!

How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

Stay in the Blood, PLEASE

Let’s finish out this lazy, hazy summer month of August with another reader question. This one was quite straight forward:

“Any advice to slow down protein leaking into urine. Hard to build muscle when you keep excreting protein”

The condition of leaking protein into your urine is called proteinuria. That’s almost self-explanatory. The root of the word actually says protein while the suffix (group of related letters added to the end of a word which changes its meaning) is defined as,

“-uria.

  1. suffix meaning the “presence of a substance in the urine”: ammoniuria, calciuria, enzymuria.
  2. combining form meaning “(condition of) possessing urine”: paruria, polyuria, pyuria.

Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-uria for the definition of uria.

Okay, so we know that protein is leaking into the urine. Not good. Why? We need it in our blood, not excreted in our urine. The following is from a previous blog on proteinuria. I used the dropdown menu in “Topics” on the right side of the blog page to find it or any other topic listed there. You can, too.

“According to WebMD at https://www.webmd.com/men/features/benefits-protein#1:

‘Protein is an important component of every cell in the body. Hair and nails are mostly made of protein. Your body uses protein to build and repair tissues. You also use protein to make enzymes, hormones, and other body chemicals. Protein is an important building block of bones, muscles, cartilage, skin, and blood.’”

Got it. Our reader is correct; it is hard to build muscle if you’re “excreting protein.” Now what? I usually stick to medical sites but this comment from Healthfully at https://healthfully.com/170108-how-to-reduce-excess-protein-in-the-kidney.html caught my eye.

“Continue monitoring how much protein your kidneys are spilling for several months. Since colds and infections can cause transient increases in protein, you will want at least several months of data.”

As Chronic Kidney Disease patients, we usually have quarterly urine tests… or, at least, I do. My urine protein level is included. I did not know that colds and infections are a factor here. Here’s an old urine analysis of mine. You can see Protein, Urine fourth from the bottom.

Component Your Value Standard Range
Color, Urine Yellow Colorless, Light Yellow, Yellow, Dark Yellow, Straw
Clarity, Urine Clear Clear
Glucose, Urine Negative mg/dL Negative mg/dL
Bilirubin, Urine Negative Negative
Ketones, Urine Negative mg/dL Negative mg/dL
Specific Gravity, Urine 1.013 1.007 – 1.026
Blood, Urine Negative Negative
pH, Urine 7.0 5.0 – 8.0
Protein, Urine Negative mg/dL Negative mg/dL
Urobilinogen, Urine <2.0 mg/dL <2.0 mg/dL
Nitrite, Urine Negative Negative
Leukocyte Esterase, Urine Negative Negative

 

Let’s say our reader did not have a cold or infection. What else could she do to slow down this loss of protein via her urine?

The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html suggests the following:

“If you have diabetes or high blood pressure, the first and second most common causes of kidney disease, it is important to make sure these conditions are under control.

If you have diabetes, controlling it will mean checking your blood sugar often, taking medicines as your doctor tells you to, and following a healthy eating and exercise plan. If you have high blood pressure, your doctor may tell you to take a medicine to help lower your blood pressure and protect your kidneys from further damage. The types of medicine that can help with blood pressure and proteinuria are called angiotensin-converting enzyme inhibitors (ACE inhibitors) and angiotensin receptor blockers (ARBs).

If you have protein in your urine, but you do not have diabetes or high blood pressure, an ACE inhibitor or an ARB may still help to protect your kidneys from further damage. If you have protein in your urine, talk to your doctor about choosing the best treatment option for you.”

So far, we’ve discovered that frequent urine testing, determining if you have a cold or infection, keeping your diabetes and blood pressure under control, and/or ACE inhibitors may be helpful. But here’s my eternal question: What else can slow down the spilling of protein into our urine?

The Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Proteinuria.php has some more ideas about that:

“In addition to blood glucose and blood pressure control, restricting dietary salt and protein intake is recommended. Your doctor may refer you to a dietitian to help you develop and follow a healthy eating plan.”

As CKD patients, we know we need to cut down on salt intake. I actually eliminate added salt and have banned the salt shakers from the kitchen. No wonder no one but me likes my cooking. You do lose your taste for salt eventually. After all these years, I taste salt in restaurant food that makes that particular food unpalatable to me.

Hmmm, it seems to me that a list of high protein foods might be helpful here.

POULTRY…

  • Skinless chicken breast – 4oz – 183 Calories – 30g Protein – 0 Carbs – 7g Fat
  • Skinless chicken (Dark) – 4 oz – 230 Calories – 32g Protein – 0 Carbs – 5g Fat
  • Skinless Turkey (White) – 4 oz – 176 Calories – 34g Protein – 0 Carbs – 3.5g Fat
  • Skinless Turkey (Dark) – 4 oz – 211 Calories – 31g Protein – 0 Carbs – 8.1 g Fat

FISH…

  • Salmon – 3 oz – 119 Calories – 17g Protein – 0 Carbs – 5.5g Fat
  • Halibut – 3 oz – 91 Calories – 18g Protein – 0 Carbs – 3g Fat
  • Tuna – 1/4 cup – 70 Calories – 18g Protein – 0 Carbs – 0g Fat
  • Mackerel – 3 oz – 178 Calories – 16.1g Protein – 0 Carbs – 12g Fat
  • Anchovies (packed in water) – 1 oz – 42 Calories – 6g Protein – 1.3g Fat
  • Flounder – 1 127g fillet – 149 Calories – 30.7g Protein – 0 Carbs – 0.5g Fat (High Cholesterol)
  • Swordfish – 1 piece 106g – 164 Calories – 26.9g Protein – 0 Carbs – 1.5g Fat (High Cholesterol)
  • Cod – 1 fillet 180g – 189 Calories – 41.4g protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Herring – 1 fillet 143g – 290 Calories – 32.9g Protein – 0 Carbs – 3.7g Fat (High Cholesterol)
  • Haddock – 1 fillet 150g – 168 Calories – 36.4g Protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Grouper – fillet 202g – 238 Calories – 50.2g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)
  • Snapper – 1 fillet 170g – 218 Calories – 44.7g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)

BEEF…

  • Eye of round steak – 3 oz – 276 Calories – 49g Protein – 2.4g Fat
  • Sirloin tip side steak – 3 oz -206 Calories – 39g Protein – 2g Fat
  • Top sirloin – 3 oz – 319 Calories – 50.9g Protein – 4g Fat
  • Bottom round steak – 3 oz – 300 Calories – 47g Protein – 3.5g Fat
  • Top round steak – 3 oz – 240 Calories – 37g Protein – 3.1g Fat

PORK…

  • Pork loin – 3 oz – 180 Calories – 25g Protein – 0 Carbs – 2.9g Fat (High in cholesterol)
  • Tenderloin– 3 oz – 103 Calories – 18g Protein – 0.3g Carbs – 1.2g Fat (High in cholesterol)

GAME MEATS…

  • Bison – 3 0z – 152 Calories – 21.6g Protein – 0 Carbs – 3g Fat
  • Rabbit – 3 oz – 167 Calories – 24.7g Protein – 0 Carbs – 2.0g Fat
  • Venison (Deer loin broiled) – 3 oz – 128 Calories – 25.7g Protein – 0 Carbs – 0.7g Fat

GRAINS…

  • Cooked Quinoa – 1/2 cup – 115 Calories – 4.1g Protein – 22 Carbs – 2g Fat
  • Cooked Brown Rice – 1/2 cup – 106 Calories – 2.7g Protein – 23 Carbs – 0.7g Fat
  • Regular Popcorn (Air Popped no oil) – 1 cup – 60 Calories – 2g Protein – 11 Carbs – 0.6g Fat
  • Steel cut Oatmeal – 1 cup – 145 Calories – 7g Protein – 25g Carbs – 2.5g Fat
  • Multi grain bread – 1 slice – 68.9 Calories – 3.5g Protein – 11.3g Carbs – 0.2g Fat

BEANS (All nutrition values calculated for cooked beans)…

  • Tofu – 1/2 cup – 98 Calories – 11g Protein – 2g Carbs – 6g Fat
  • Lentils – 1/2 cup – 119 Calories – 9g Protein – 20g Carbs – 0.3g Fat
  • Black beans – 1/2 cup – 115 Calories – 7.8g Protein – 20 Carbs – 0.4g Fat
  • Kidney beans – 1/2 cup – 111 Calories – 7.2g Protein – 20.2 Carbs – 0.4g Fat
  • Lima beans – 1/2 cup – 110 Calories – 7.4g Protein – 19.7 Carbs – 0.3g Fat
  • Soy beans – 1/2 cup – 133 Calories – 11g Protein – 10 Carbs – 5.9g Fat

DAIRY…

  • Skim milk – 1 cup – 90 Calories – 9g Protein – 12g Carbs – 4.8g Fat
  • Low fat Yogurt – 1 cup – 148 Calories – 12g Protein – 17Carbs – 3.2g Fat
  • Non fat Yogurt – 1 cup – 130 Calories – 13g Protein – 16.9 Carbs – 0.4 Fat
  • Cheddar cheese – 1 oz – 116 Calories – 7g Protein – 0.4 Carbs – 9.2g Fat
  • Low fat Cottage Cheese – 1/2 cup – 82 Calories – 14g Protein – 3.1g Carbs – 0.7g Fat
  • One large egg – 73 Calories – 6.6g Protein – 0 Carbs – 6g Fat
  • Low fat Milk – 1 cup – 119 Calories – 8g Protein – 12 Carbs – 4.6g Fat

NUTS & SEEDS…

  • Raw Almonds – 1 oz about 22 whole – 169 Calories – 22g Carbs – 6.2g Protein – 1.1g Fat
  • Raw Pistachios – 1 oz about 49 Kernels – 157 Calories – 7.9g Carbs – 5.8g Protein – 1.5g Fat
  • Pumpkin seeds – 1 oz – 28g about 100 hulled seeds – 151 Calories – 5g Carbs – 6.0g Protein – 2.4g Fat
  • Raw Macadamia nuts – 1 oz about 10- 12 kernels – 203 Calories – 4g Carbs – 2.2g Protein – 3.4g Fat
  • Chia seeds – 1 oz – 137 Calories – 12.3g Carbs – 4.4g Protein – 0.9g Fat
  • Walnuts – 1 cup in shell about 7 total – 183 Calories – 3.8g Carbs – 4.3g Protein – 1.7g Fat
  • Raw Cashews1oz – 28g – 155 Calories – 9.2g Carbs – 5.1g Protein – 2.2g Fat

MORE HIGH PROTEIN FOODS…

  • Natural peanut butter – 1 oz – 146 Calories – 7.3g Protein – 10g Carbs – 1.6g Fat
  • Natural almond butter – 1 tbsp – 101 Calories – 2.4g Protein – 3.4 Carbs – 0.9g Fat
  • Natural cashew butter – 1 tbsp – 93.9 Calories – 2.8g Protein – 4.4 Carbs – 1.6g Fat
  • Hummus – 1 oz – 46.5 Calories – 2.2g Protein – 4.0g Carbs – 0.4g Fat
  • Tempeh Cooked – 1 oz – 54 Calories – 5.1g Protein – 2.6g Carbs – 1.0g Fat

There’s a vegan list on the same site. Be leery of protein sources that are not on your kidney diet.

Until next week,

Keep living your life!

 

That Looks Swollen       

Remember I mentioned that several readers have asked questions that would become blogs? For example, one reader’s question became last week’s blog concerning creatinine and PTH. Another reader’s question became this week’s blog about lymphedema. She was diagnosed with it and wondered if it had anything to do with her protein buildup.

She’s a long time reader and online friend, so she already knows I remind those that ask questions that I am not a doctor and, no matter what I discover, she must speak with her nephrologist before taking any action based on what I wrote. That is always true. I’m a CKD patient just like you. The only difference is that I know how to research (Teaching college level Research Writing taught me a lot.) and happen to have been a writer for decades before I was diagnosed. Just take a look at my Amazon Author Page at amazon.com/author/gailraegarwood . But enough about me.

Anyone know what lymphedema is? I didn’t when I first heard the word, although my Hunter College of C.U.N.Y education as an English teacher gave me some clues. Edema had something to do with swelling under the skin. Actually, we can get more specific with The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-edema :

“suffix meaning swelling resulting from an excessive accumulation of serous fluid in the tissues of the body in (specified) locations”

I took a guess that lymph had to do with the lymph nodes. Using the same dictionary, but this time at https://medical-dictionary.thefreedictionary.com/lymph, I found this:

“The almost colourless fluid that bathes body tissues and is found in the lymphatic vessels that drain the tissues of the fluid that filters across the blood vessel walls from blood. Lymph carries antibodies and lymphocytes (white blood cells that help fight infection) that have entered the lymph nodes from the blood.”

Time to attach the suffix (group of letters added at the end of a word that changes its meaning) to the root (most basic meaning of the word) to come up with a definition of lymphedema. No, not my definition, the same dictionary’s.

“Swelling, especially in subcutaneous tissues, as a result of obstruction of lymphatic vessels or lymph nodes, with accumulation of lymph in the affected region.”

I found this definition at https://www.thefreedictionary.com/lymphedema, but if you switch the search options at the top of the page from dictionary to medical dictionary, you’ll find quite a bit of information about lymphedema.

Okay, we know what lymphedema is now but what – if anything – does that have to do with protein buildup? This is the closest I could come to an answer that

  1. Wasn’t too medical for me to understand and
  2. Had anything to do with the kidneys.

“A thorough medical history and physical examination are done to rule out other causes of limb swelling, such as edema due to congestive heart failure, kidney failure, blood clots, or other conditions.”

It’s from MedicineNet at https://www.medicinenet.com/lymphedema/article.htm#how_is_lymphedema_diagnosed

My friend, while a Chronic Kidney Disease patient, is not in renal failure. Was there something I missed?

Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/treating-lymphedema gives us our first clue. It seems that lymphedema is a buildup of a specific fluid: protein-rich:

“Lymphedema is an abnormal buildup of protein-rich fluid in any part of the body as a result of malfunction in the lymphatic system.”

Malfunction in the lymphatic system? What could cause that? According to Lymphatic Education & Research at https://lymphaticnetwork.org/living-with-lymphedema/lymphatic-disease:

Secondary Lymphedema (acquired regional lymphatic insufficiency) is a disease that is common among adults and children in the United States. It can occur following any trauma, infection or surgery that disrupts the lymphatic channels or results in the loss of lymph nodes. Among the more than 3 million breast cancer survivors alone, acquired or secondary lymphedema is believed to be present in approximately 30% of these individuals, predisposing them to the same long-term problems as described above. Lymphedema also results from prostate, uterine, cervical, abdominal, orthopedic cosmetic (liposuction) and other surgeries, malignant melanoma, and treatments used for both Hodgkin’s and non-Hodgkin’s lymphoma. Radiation, sports injuries, tattooing, and any physical insult to the lymphatic pathways can also cause lymphedema. Even though lymphatic insufficiency may not immediately present at the time any of the events occur, these individuals are at life-long risk for the onset of lymphedema.”

I know the reader who has asked the question has a complex medical history that may include one or more of the conditions listed above. As for the protein buildup, we already know that kidneys which are

not working well don’t filter the protein from your blood as well as they could. So, is there a connection between this reader’s protein buildup and her lymphedema? Sure looks like it.

While the following is from BreastCancer.org at https://www.breastcancer.org/treatment/lymphedema/how/start, it is a simple explanation that may apply to other causes of lymphedema, too:

“… lymph nodes and vessels can’t keep up with the tissues’ need to get rid of extra fluid, proteins (Gail here: my bolding), and waste.… the proteins and wastes do not get filtered out of the lymph as efficiently as they once did. Very gradually, waste and fluid build up…. “

Ready for a topic change? The World Health Organization offers this pictograph for our information. Notice diabetes, one of the main causes of Chronic Kidney Disease.

Until next week,

Keep living your life!

What’s That Got to Do with My Occupation?

I’ve written about neuropathy, but what is this occupational therapy that may treat it? I know about physical therapy and have made use of it when necessary. Remember a few years ago when knee surgery was indicated? Physical therapy helped me avoid the surgery.

This time I was offered gabapentin for the neuropathy. That’s a drug usually used for epilepsy which can also help with neuropathy. I would explain how it works, but no one seems to know. I had two problems with this drug:

  1. Gabapentin became a controlled substance in England as of April of this year. England always seem to be one step ahead of the U.S. re medications.
  2. It is not suggested if you have kidney disease.

My other option was occupational therapy. That’s the one I chose. Let’s backtrack a bit for a definition of occupational therapy. Thank you to my old buddy (since college over 50 years ago) the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/occupational%20therapy for the following definition.

“therapy based on engagement in meaningful activities of daily life (such as self-care skills, education, work, or social interaction) especially to enable or encourage participation in such activities despite impairments or limitations in physical or mental functioning”

That got me to wondering just how occupational therapy differed from physical therapy, the kind of therapy with which I was already familiar. I went to my old buddy again, but this time at https://www.merriam-webster.com/dictionary/physical%20therapy for any hints I could pick up from the definition for physical therapy.

“therapy for the preservation, enhancement, or restoration of movement and physical function impaired or threatened by disease, injury, or disability that utilizes therapeutic exercise, physical modalities (such as massage and electrotherapy), assistive devices, and patient education and training”

Made sense to me. Physical therapy was for the movement of the body, while occupational therapy was to help you carry out the tasks of your daily life. For example, it takes me longer to write a blog because my tingling, yet numb, fingers often slip into the spaces between the keys on the keyboard. Another example is that I now use a cane since I can’t tell if my tingling, yet numb, feet are flat on the floor as I walk.

Something I found interesting about occupational therapy is that it uses many forms of therapy that were once considered alternative medicine… like electrical energy. What’s that you say? You’d like an example?

Well, here you go. My therapist uses a machine called a Havimat. The following is from the National Stem Cell Institute at https://nsistemcell.com/hivamat-how-it-relieves-edema/  and explains what the Havimat can do and how.

“….The therapist connects an electronic lead to his/her wrist while the patient grasps a small cylinder grip. The vinyl gloves that the therapist wears prevents the circuit of electric current from closing, thus creating the ‘push-pull’ effect that penetrates deeply into tissues. Meanwhile, the patient’s experience is one of a pleasant, deep massage maintained by the therapist’s gentle pressure as he/she directs the deep oscillation.

…. The therapy “un-dams” trapped fluid. Tissues are decongested and edema is significantly reduced. This shrinks swelling in the area being treated. Hivamat has been shown to be exceptionally effective in relieving lymphedema when used by therapists to enhance manual lymphatic drainage.

…. Besides the reduction of edema, therapists use Hivamat for ridding tissues of toxins [Gail here: like chemotherapy.]  When used by a certified therapist during a manipulation technique known as manual lymphatic drainage, the therapy improves lymph fluid movement. This encourages better flow through the lymphatic system, which then carries away metabolic waste and toxins more quickly. Hivamat also promotes the production of lymphocytes, which improve the function of the immune system. [Gail here again: as CKD patients, our immune systems are compromised.]”

There is one thing, though. Apparently, the Havimat is NOT suggested if there is an active tumor. Uh-oh, I had three treatments with the Havimat before I uncovered that fact. I’ll have to speak with my therapist today and find out why she didn’t know that. But it is clear that using electrical energy as treatment is another case of what was formerly considered alternative medicine becoming mainstream medicine.

Topic switch. I’ve written about the American Association of Kidney Patients (AAKP), precision care, and clinical trials many times before. You’re probably already aware of the new initiative for patient care. AAKP wants your help in doing their part as far as patient experience with this survey.

“As part of AAKP’s National Strategy, we have expanded our

capacities to involve a far larger, and more representative, number

of patients in research opportunities and clinical trials. The

results of these research opportunities and clinical trials will help

create a clearer understanding of the patient experience and help

shape the future of kidney disease treatment and care. AAKP is

fully committed to changing the status quo of kidney care

and to better aligning treatment to personal aspirations.

To achieve this goal, the AAKP Center for Patient Research &

Education is working with top researchers to ensure that the

patient voice, patient preferences and patient perceptions are

heard.

AAKP is very pleased to partner with Northwestern University

and University of Pennsylvania on an important research

project organ donation.

Please consider taking part in this online survey and help

shape the future of kidney care for you and those yet to

be diagnosed.

Volunteers Needed for Research Study!

Researchers at Northwestern University and University of Penn-

sylvania invite kidney transplant candidates to participate

in a survey about your opinions of research done on donor

organs. Such research aims to help organs work better and

make more organs available for transplantation.

Your responses will help to improve the informed consent

process for transplant candidates.

You are eligible to participate if you:

•  Are 18+ years old

•  Speak English

•  Are currently a transplant candidate on the waitlist for only

    one organ

This anonymous survey is voluntary, and will take about 45

minutes of your time.

Your decision about participating will not affect your place on

the waiting list. Your participation may help improve the informed

consent process for transplant candidates.

Find out more information and take the survey by clicking

the link below [Gail here yet again: Don’t forget to click

control at the same time.]:

https://redcap.nubic.northwestern.edu/redcap/surveys/index.php?s=TEMXLDLF8A

Thank you to those taking part in the survey for helping

AAKP help those awaiting a transplant.

Until next week,

Keep living your life!

Not Nuked

Friday, I saw my oncology radiologist after having had a week of radiation treatments. As he was explaining what the radiation was meant to do to the remaining third of the tumor and how it was being done, one sentence he uttered stood out to me: “This doesn’t work like your microwave.”

Since radiation is also used in treating kidney cancer… and any other kind of cancer, to the best of my knowledge… I decided to take a look at that statement. First we need to know how a microwave works, so we know how radiation treatment for cancer doesn’t work. I went to the Health Sciences Academy at https://thehealthsciencesacademy.org/health-tips/microwave-radiation/ for an explanation.

“How do microwaves work?

Before we talk about how microwaves heat your food, let’s make a distinction between two very different kinds of radiation:

  1. ionising radiation, and
  2. non-ionising radiation.

Ionising radiation, which can remove tightly-bound electrons from atoms, causing them to become charged, is less risky in very tiny amounts (such as x-rays) but can cause problems when exposure is high (think burns and even DNA damage). However, microwaves emit non-ionising radiation; a type of radiation that has enough energy to move atoms around within a molecule but not enough to remove electrons.

What does this mean? Because the radiation from microwaves is non-ionising, it can only cause molecules in the food to move. …. In other words, microwave radiation cannot alter the chemical structure of food components. More precisely, when heating food in a microwave, the radiation that the microwave produces is actually absorbed by the water molecules in the food. This energy causes the water molecules to vibrate, generating heat through this (harmless) friction, which cooks the food. This mechanism is what makes microwaves much faster at heating food than other methods. Its energy immediately reaches molecules that are about an inch below the outer surface of the food, whereas heat from other cooking methods moves into food gradually via conduction….”

Phew, I’m glad to know I’m not being cooked from the inside. But what is happening to me and everyone else who has radiation as a cancer treatment? I went straight to the American Cancer Society at https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/basics.html  for the answer.

“Radiation therapy uses high-energy particles or waves, such as x-rays, [Gail here: this is ionising radiation.] gamma rays, electron beams, or protons, to destroy or damage cancer cells.

Your cells normally grow and divide to form new cells. But cancer cells grow and divide faster than most normal cells. Radiation works by making small breaks in the DNA inside cells. These breaks keep cancer cells from growing and dividing and cause them to die. Nearby normal cells can also be affected by radiation, but most recover and go back to working the way they should.

Unlike chemotherapy, which usually exposes the whole body to cancer-fighting drugs, radiation therapy is usually a local treatment. In most cases, it’s aimed at and affects only the part of the body being treated. Radiation treatment is planned to damage cancer cells, with as little harm as possible to nearby healthy cells.

Some radiation treatments (systemic radiation therapy) use radioactive substances that are given in a vein or by mouth. Even though this type of radiation does travel throughout the body, the radioactive substance mostly collects in the area of the tumor, so there’s little effect on the rest of the body.”

I don’t know how many times this was explained to me, but seeing it now in black and white (and blue for the click through) suddenly makes it clear. So this means I’ve had four months of my entire body being attacked – in a lifesaving way, of course – now only the cancer cells are being attacked.

Yet, I am experiencing some side effects even after only one week of radiation. I wondered if that’s usual. Cancer.net at https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/side-effects-radiation-therapy   answered that question for me.

“Why does radiation therapy cause side effects?

High doses of radiation therapy are used to destroy cancer cells. Side effects come from damage to healthy cells and tissues near the treatment area. Major advances in radiation therapy have made it more precise. This reduces the side effects.

Some people experience few side effects from radiation therapy. Or even none. Other people experience more severe side effects.

Reactions to the radiation therapy often start during the second or third week of treatment. They may last for several weeks after the final treatment.

Are there options to prevent or treat these side effects?

Yes. Your health care team can help you prevent or treat many side effects. Preventing and treating side effects is an important part of cancer treatment. This is called palliative care or supportive care.

Potential side effects

Radiation therapy is a local treatment. This means that it only affects the area of the body where the tumor is located. For example, people do not usually lose their hair from having radiation therapy. But radiation therapy to the scalp may cause hair loss.

Common side effects of radiation therapy include:

Skin problems. Some people who receive radiation therapy experience dryness, itching, blistering, or peeling. These side effects depend on which part of the body received radiation therapy. Skin problems usually go away a few weeks after treatment ends. If skin damage becomes a serious problem, your doctor may change your treatment plan.

Fatigue. Fatigue describes feeling tired or exhausted almost all the time. Your level of fatigue often depends on your treatment plan. For example, radiation therapy combined with chemotherapy may result in more fatigue. Learn more about how to cope with fatigue.

Long-term side effects. Most side effects go away after treatment. But some continue, come back, or develop later. These are called late effects. One example is the development of a second cancer. This is a new type of cancer that develops because of the original cancer treatment. The risk of this late effect is low. And the risk is often smaller than the benefit of treating the primary, existing cancer.”

Funny how I managed to forget about late effects, even though my oncology team made it clear this could happen. I think having the radiation to rid myself of this cancer is worth the risk.

Until next week,

Keep living your life!

Platelets, Blood, and RSNHope or a Little Bit of This and a Little Bit of That

A reader from India asked me why I kept writing about chemotherapy. I explained that I have pancreatic cancer and that was part of my treatment. Chronic Kidney Disease patients may develop kidney cancer, although this type of cancer is not restricted to CKD patients. They also may develop another type of cancer that has nothing to do with the kidneys. Everyone’s experience with chemotherapy is different, but I thought one person’s experience was better than none. Here’s hoping you never have to deal with any kind of cancer or chemotherapy, however.

While we’re on explanations, I have a correction to make. The nurses at the Pancreatic Cancer Research Institute here in Arizona are a fount of knowledge. One of them heard me talking to my daughter about a platelet infusion and corrected me. It seems it’s a platelet transfusion, just as it’s a blood transfusion.

According to The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/infusion

“in·fu·sion

(in-fyū’zhŭn),

  1. The process of steeping a substance in water, either cold or hot (below the boiling point), to extract its soluble principles.
  2. A medicinal preparation obtained by steeping the crude drug in water.
  3. The introduction of fluid other than blood, for example, saline solution, into a vein.”

The same dictionary, but at https://medical-dictionary.thefreedictionary.com/transfusion , tells us:

“Transfusion is the process of transferring whole blood or blood components from one person (donor) to another (recipient).”

Therein lays the difference. Platelets are part of the blood, so it’s a platelet transfusion. I’m glad that’s straightened out.

While we’re on this topic, here’s a chart of compatible blood types for transfusions… always a handy thing to have.

Blood Type of Recipient Preferred Blood Type of Donor If Preferred Blood Type Unavailable, Permissible Blood Type of Donor
A A O
B B O
AB AB A, B, O
O O No alternate types

O is the universal blood type and, as you’ve probably noticed, is compatible with all blood types. The plus or minus sign after your blood type refers to being RH negative or positive. For example, my blood type is B+. That means I have type B blood and am RH positive.

I’ve had platelet transfusions several times since I was leaking blood here and there. Nothing like eating lunch and having nasal blood drip into your salad. Ugh! You also become weak and your hemoglobin goes down. Not a good situation at all. You know I’m hoping you never need one, but who knows what can happen in the future. Just in case you’ve forgotten what platelets are, Macmillan Cancer Support at https://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/platelet-transfusions.html#18772 is here to help us out.

“Platelets are tiny cells in your blood which form clots to help stop bleeding. They develop from stem cells in the bone marrow (the spongy material inside the bones). They are then released from your bone marrow into your blood and travel around your body in your bloodstream. Platelets usually survive for 7–10 days before being destroyed naturally in your body or being used to clot the blood.”

You’ll probably notice the term “RH Positive” (unless you’re RH Negative, of course) written on the platelet transfusion bag. You know I had to find out why.  Memorial Sloan Cancer Center at https://www.mskcc.org/cancer-care/patient-education/frequently-asked-questions-about-blood-transfusion offers this information about your blood that will help us understand:

“Your blood type is either A, B, AB, or O. It’s either Rh positive (+) or Rh negative (-).

Your blood type is checked with a test called a type and crossmatch. The results of this test are used to match your blood type with the blood in our blood bank. Your healthcare provider will check to make sure that the blood is the correct match for you before they give you the transfusion.”

The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/rh-factor/about/pac-20394960 clarifies just what Rh Positive means:

“Rhesus (Rh) factor is an inherited protein found on the surface of red blood cells. If your blood has the protein, you’re Rh positive. If your blood lacks the protein, you’re Rh negative.

Rh positive is the most common blood type. Having an Rh negative blood type is not an illness and usually does not affect your health. However, it can affect your pregnancy. “

What I found especially interesting is that,

“If you have Rh-positive blood, you can get Rh-positive or Rh-negative blood. But if you have Rh-negative blood, you should only get Rh-negative blood. Rh-negative blood is used for emergencies when there’s no time to test a person’s Rh type.”

Thank you to Health Jade at https://healthjade.net/blood-transfusion/#Rh_Rhesus_factor for this information. This is a new site for me. You might want to take a look since their illustrations make so much clear.

Switching topics now. Are you aware of RSNHope.org? Lori Hartwell is one of the most active CKD and dialysis people I’ve met in the entire nine years I’ve been writing about CKD. For example, she has this wonderful salad bar help for the renal diet:

“Choose:  lettuce escarole, endive, alfalfa sprouts, celery sticks, cole slaw, cauliflower, cucumbers, green beans, green peas, green peppers, radishes, zucchini, better, eggs (chopped), tuna in spring water, parmesan cheese, Chinese noodles, gelatin salads, Italian low calorie dressing, vinaigrette, low fat dressing.

Avoid:  avocado, olives, raisins, tomatoes, pickles, bacon bits, chickpeas, kidney beans nuts, shredded cheddar cheese, three bean salads, sunflower seeds, Chow Mein noodles, fried bread croutons, potato salad, thick salad dressing, relishes”

What could be easier than printing this out and sticking it in your wallet? But Lori is not just about the renal diet. She also posts CKD & dialysis podcasts at KidneyTalk 24/7 Podcast Radio Show. All this and more are on the website. I must admit I look forward to the RSNHope magazine each quarter.

Until next week,

Keep living your life!

Diabetic Neuropathy or Not: I WILL Dance Again

I come from a family of dancers. My parents and their siblings were all light on their feet and danced from the time they were teens right up until just before their deaths. It was a delight to watch them. The tradition continued with me… and my youngest who actually taught blues dancing for several years.

Ah, but then my neuropathy appeared. This was years before the diabetes diagnosis. Hmmm, there’s still a question as to whether or not the diabetes was caused by the pancreatic cancer. After all, the pancreas does produce insulin.

I just reread the above two paragraphs and see so much that needs some basic explanation. Let’s start with those explanations this week. How many of you know what neuropathy is? I didn’t either until I was diagnosed with it. According to my favorite dictionary since college a million years ago, The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/neuropathy defines neuropathy as:

“damage, disease, or dysfunction of one or more nerves especially of the peripheral nervous system that is typically marked by burning or shooting pain, numbness, tingling, or muscle weakness or atrophy, is often degenerative, and is usually caused by injury, infection, disease, drugs, toxins, or vitamin deficiency “

If you clicked though on ‘peripheral nervous system’ in the dictionary definition, you know it means,

“the part of the nervous system that is outside the central nervous system and comprises the cranial nerves excepting the optic nerve, the spinal nerves, and the autonomic nervous system”

Since the neuropathy was so minor before the pancreatic cancer, I wasn’t even aware of it until my neurologist did some testing. I knew my feet were tingly sometimes, but I thought they had fallen asleep. It did sort of feel like that.

Then, I started chemotherapy in March. The tingling became so bad that I couldn’t feel my feet under me and had to rely on a cane to keep my balance. We thought it was the chemo drugs causing the neuropathy. Uh-oh, that was just about when my hands became affected, too, and my A1C (Remember that one? It’s the blood test for the average of your blood glucose over a three month period.) rose all the way to 7.1.

Healthline at https://www.healthline.com/health/type-2-diabetes/ac1-test#understanding-the-results tells us,

“Someone without diabetes will have about 5 percent of their hemoglobin glycated [Gail here: that means glucose bonded to hemoglobin]. A normal A1C level is 5.6 percent or below, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

A level of 5.7 to 6.4 percent indicates prediabetes. People with diabetes have an A1C level of 6.5 percent or above.”

Mind you, during chemotherapy I’d been ordered to eat whatever I could. Getting in the calories would cut down on the expected weight loss. In all honesty, I’m the only person I know what gained weight while on chemotherapy.

Now, what is this about the pancreas producing insulin? Might as well get a definition of insulin while we’re at it. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=3989 offered the simplest explanation:

“A natural hormone made by the pancreas that controls the level of the sugar glucose in the blood. Insulin permits cells to use glucose for energy. Cells cannot utilize glucose without insulin.”

That would explain why my energy is practically nil, but it also seems to indicate that I won’t be able to do anything about it until after the surgery to remove the tumor. Although, when I start radiation next week, I may be able to go back to the diabetic diet. By the way, after following the Chronic Kidney Disease diet for 11 years, none of the new – off the CKD diet – foods I tried are appealing to me.

But I digress. So, what now? I need to dance; it’s part of who I am. My oncologist referred me to Occupational Therapy. Now I have exercises and tactile surfaces to explore that may be helpful. But what about those who are not going through chemotherapy, but do have diabetic neuropathy? Remember diabetes is the number cause of CKD.

Oh, my goodness. It looks like there are as many ways to treat neuropathy as there are different kinds of neuropathy. I hadn’t expected that. EverydayHealth at https://www.everydayhealth.com/neuropathy/guide/treatment/ gives us an idea of just how complicated choosing the proper treatment for your neuropathy can be:

What Are the Main Ways That Neuropathy Is Treated?

Treating neuropathy in general focuses first on identifying and then addressing the underlying condition to help prevent further damage and give nerves the time they need to heal to the extent that they can.

“The treatment for the neuropathy is to reverse whatever it is that is causing the neuropathy,” says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, California. “We try to reverse the insult to the nerves first and then do symptomatic control.”

For people with diabetic neuropathy, the first step physicians take is getting the person’s blood glucose level under control, says Matthew Villani, DPM, a podiatrist at Central Florida Regional Hospital in Sanford, Florida.

This treatment approach aims to remove the “insult” created by the excess sugar to peripheral nerves throughout the body — but especially the extremities, Dr. Segil explains.

Here are some other ways diabetic neuropathy may be treated:

  • Numbness or complete loss of sensation can lead to complications such as ulcers, sores, and limb amputations. It is addressed by monitoring the affected areas — often the feet — for injuries and addressing wounds before they become more serious, as well as prescribing protective footwear and braces.
  • Orthostatic hypotension (a drop in blood pressure upon standing up), which is an autonomic symptom, can be treated with increased sodium intake, a vasopressor such as ProAmatine (midodrine) to constrict blood vessels, a synthetic mineralocorticoid such as fludrocortisone to help maintain the balance of salt in the body, or a cholinesterase inhibitor such as pyridostigmine, which affects neurotransmitters.
  • Gastroparesis, a delayed emptying of the stomach, is another autonomic symptom, which can be treated with medication to control nausea and vomiting, such as Reglan (metoclopramide), Ery-Tab (erythromycin), antiemetics, and antidepressants, as well as pain medication for abdominal discomfort.
  • Motor neuropathy symptoms can include weakness and muscle wasting, particularly in the lower extremities, as well as deformities of the feet and loss of the Achilles’ heel tendon reflex. Treatments can include physical therapy to regain strength, as well as braces and orthotics.

I’ve got to think about this. Any questions? Well, then,

Until next week,

Keep living your life!

Platelets Keep It Together

During my chemo journey, I’ve needed an infusion of platelets several times. Chronic Kidney Disease patients sometimes need them, too, but I’ll write about that later on in this blog. First question from the audience?

Oh, that’s a good one: What are platelets? This is from my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and will help to explain.

“1. The white blood cells makeup your immune system. There are usually from 7,000 to 25,000 WBC in a drop of blood, but if you have an infection, that number rises since these are the infection fighting blood cells.

2. The red blood cells, also called erythrocytes, carry oxygen to the other cells in your body – so the higher the number here the better – and waste such as carbon dioxide from them. There are approximately five billion red blood cells – the midsized cells – in a single drop of your blood.

3. The platelets deal with the blood’s clotting ability by repairing leaks in your blood vessels. Normally, there are 150,000 to 350,000 platelets in one drop of blood.”

I’ve included all three types of blood cells as we just might need that information later on.

Okay, how about another question? What’s that? You want to know how you know if your platelets are decreased? When you have blood tests, one of them is usually the CBC or Complete Blood Count. Let’s see if we can find more information from The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919.

“A complete blood count (CBC) is a blood test used to evaluate your overall health and detect a wide range of disorders, including anemia, infection and leukemia.

A complete blood count test measures several components and features of your blood, including:

Red blood cells, which carry oxygen

White blood cells, which fight infection

Hemoglobin, the oxygen-carrying protein in red blood cells

Hematocrit, the proportion of red blood cells to the fluid component, or plasma, in your blood

Platelets, which help with blood clotting”

If your doctors are anything like mine, I have one every three months for my primary care doctor, an annual CBC for my nephrologist, and weekly for my oncologist.

Now, remember the normal range of platelets is 150,000 to 350,000 platelets in one drop of blood. Mine were 16,000. Sure, it was the chemotherapy that was killing my platelets, but it was also the chemotherapy that was shrinking the tumor and lowering the tumor markers in my CA19-9 (blood test for tumor markers in pancreatic cancer). I couldn’t stop the chemotherapy, but my doctors could raise my platelets via infusion.

Young man in the back? Nice! He wants to know what the difference between infusion and transfusion is.  According to The Free Dictionary’s Medical Dictionary at https://medical-dictionary.thefreedictionary.com/infusion, infusion means

1. the steeping of a substance in water to obtain its soluble principles.

2. the product obtained by this process.

3. the slow therapeutic introduction of fluid other than blood into a vein.

That’s right. The third definition is the one we need.

Using the same source, this time at https://medical-dictionary.thefreedictionary.com/transfusion, we learn that transfusion means

“Transfusion is the process of transferring whole blood or blood components from one person (donor) to another (recipient).”

By the way, there’s quite a bit of other information about transfusions on this page.

Let’s talk about platelet infusions and CKD patients now. UpToDate at https://www.uptodate.com/contents/platelet-dysfunction-in-uremia  offers the following, but we may need a bit of hand holding to understand it:

“The association between renal dysfunction and bleeding was recognized more than 200 years ago…. However, there remains an incomplete understanding of the underlying pathophysiology. Impaired platelet function is one of the main determinants of uremic bleeding. This impairment is due largely to incompletely defined inhibitors of platelet function in the plasma of patients with markedly reduced kidney function. Abnormal platelet-endothelial interaction and anemia also play a role.”

Do you remember what uremic means? No problem … come along with me to visit my old buddy, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/uremia

“1accumulation in the blood of constituents normally eliminated in the urine that produces a severe toxic condition and usually occurs in severe kidney disease

2: the toxic bodily condition associated with uremia”

Let’s use the same dictionary, this time at https://www.merriam-webster.com/dictionary/endothelial, for the definition of endothelial, which is the adjective or describing word for endothelium.

“1: an epithelium of mesodermal origin composed of a single layer of thin flattened cells that lines internal body cavities and the lumens of vessels

2: the inner layer of the seed coat of some plants”

You guessed it: the first definition is the one we need. I think all the pieces are in place for you to understand the need for the right number of platelets and that platelet infusions are sometimes necessary. Too bad I didn’t before my white blouses and nightgowns were stained by the blood leaking from my nose (and other places too delicate to mention). Oh well, I can always buy more clothes.

New topic. I’ve written about All of Us Research several times and received this email from them this week.

“In case you missed it, we introduced our new Data Browser at the All of Us Research Program symposium on May 6th. The Data Browser is an interactive tool that lets you learn more about the health data that you and all the other participants have contributed so far. Currently in beta testing, it lets you search by topics like health conditions, survey questions, and physical measurements, and will include more data over time.

 We invite you to take a look at the Data Browser and let us know what you think. If you have feedback, you can email support@ResearchAllofUs.org.”

The URL for the Data Browser is https://databrowser.researchallofus.org.

Until next week,

Keep living your life!

More Time to Learn

I don’t think I’ve ever felt this tired in my life. Cancer does that… and it leaves me a lot of time in bed to explore whatever I’d like to on the internet. So now I’m discovering all these – what’s the word? – possibly peripheral? diseases that affect the kidneys. For example, while I don’t have the energy to post a new Chronic Kidney Disease picture on Instagram every day, I do check the site daily and like what appeals to me and learn from what’s new to me.

That’s where I noticed posts about Bartter syndrome. If you’re like me, you want to know about something you’ve never heard of before. Let’s explore this together.

I went directly to my old friend, MedlinePlus, which is part of the U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000308.htm for a definition and the causes:

“Bartter syndrome is a group of rare conditions that affect the kidneys.

Causes

There are five gene defects known to be associated with Bartter syndrome. The condition is present at birth (congenital). The condition is caused by a defect in the kidneys’ ability to reabsorb sodium. People affected by Bartter syndrome lose too much sodium through the urine. This causes a rise in the level of the hormone aldosterone, and makes the kidneys remove too much potassium from the body. This is known as potassium wasting. The condition also results in an abnormal acid balance in the blood called hypokalemic alkalosis, which causes too much calcium in the urine.”

It looks like there are a few terms here we may now be familiar with. Let’s take a look at aldosterone. The Hormone Health Network from the Endocrine Society at https://www.hormone.org/hormones-and-health/hormones/aldosterone tells us:

“Aldosterone is produced in the cortex of the adrenal glands, which are located above the kidneys…. Aldosterone affects the body’s ability to regulate blood pressure. It sends the signal to organs, like the kidney and colon, that can increase the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine. The hormone also causes the bloodstream to re-absorb water with the sodium to increase blood volume. All of these actions are integral to increasing and lowering blood vessels. Indirectly, the hormone also helps maintain the blood’s pH and electrolyte levels.”

And hypokalemic alkalosis? What is that? Healthline at https://www.healthline.com/health/alkalosis#types  gave me the answer: “Hypokalemic alkalosis Hypokalemic alkalosis occurs when your body lacks the normal amount of the mineral potassium. You normally get potassium from your food, but not eating enough of it is rarely the cause of a potassium deficiency. Kidney disease, excessive sweating, and diarrhea are just a few ways you can lose too much potassium. Potassium is essential to the proper functioning of the:

  • heart
  • kidneys
  • muscles
  • nervous system
  • digestive system”

Hmmm, so kidney disease can cause you to lose too much potassium, which can then interfere with the proper functioning of your kidneys. Doesn’t sound good to me. But, remember that the condition is congenital and will show up at birth.

Let’s say it does. Then what? According to Verywellhealth at https://www.verywellhealth.com/bartter-syndrome-2860757:

“Treatment of Bartter syndrome focuses on keeping the blood potassium at a normal level. This is done by having a diet rich in potassium and taking potassium supplements if needed. There are also drugs that reduce the loss of potassium in the urine, such as spironolactone, triamterene, or amiloride. Other medications used to treat Bartter syndrome may include indomethacin, captopril, and in children, growth hormone.”

Food rich in potassium? I’m sure bananas came directly into your mind but there are others. I chose to use the National Kidney Foundation’s list of high potassium foods at https://www.kidney.org/atoz/content/potassium since this is a blog about CKD.What foods are high in potassium (greater than 200 milligrams per portion)? The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits Vegetables Other Foods
Apricot, raw (2 medium) dried (5 halves) Acorn Squash Bran/Bran products
Avocado (¼ whole) Artichoke Chocolate (1.5-2 ounces)
Banana (½ whole) Bamboo Shoots Granola
Cantaloupe Baked Beans Milk, all types (1 cup)
Dates (5 whole) Butternut Squash Molasses (1 Tablespoon)
Dried fruits Refried Beans Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried Beets, fresh then boiled
Grapefruit Juice Black Beans
Honeydew Broccoli, cooked Nuts and Seeds (1 ounce)
Kiwi (1 medium) Brussels Sprouts Peanut Butter (2 tbs.)
Mango(1 medium) Chinese Cabbage Salt Substitutes/Lite Salt
Nectarine(1 medium) Carrots, raw Salt Free Broth
Orange(1 medium) Dried Beans and Peas Yogurt
Orange Juice Greens, except Kale Snuff/Chewing Tobacco
Papaya (½ whole) Hubbard Squash
Pomegranate (1 whole) Kohlrabi
Pomegranate Juice Lentils
Prunes Legumes
Prune Juice White Mushrooms, cooked (½ cup)
Raisins Okra
Parsnips
Potatoes, white and sweet
Pumpkin
Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices”

I also have a list of food sensitivities, so I avoid those foods. If you do, too, you might want to cross those foods off your high potassium foods list if you just happen to have Bartter syndrome.

Time for a few personal notes here. Thank you all for your well wishes and good cheer. Via a clinical trial, I have been able to shrink the pancreatic cancer tumor by two thirds and bring my blood tumor marker down to BELOW normal. This raises my chances for a successful Whipple surgery from 50% to 70% and that’s before another round of chemotherapy with radiation added. Hopeful? You bet! I also wanted to remind you that the SlowItDownCKD series makes a wonderful graduation, wedding, and Father’s Day gift for those new to Chronic Kidney Disease, those not new to Chronic Kidney Disease, and those who would like to share CKD with others in their lives.

Until next week,

Keep living your life!

No Longer a Transfusion Virgin

I’ve been thinking about the similarities between Chronic Kidney Disease treatment and Pancreatic Cancer treatment… or, at least, my Pancreatic Cancer treatment. Some are superficial, like going to the Research Institute several days a week for chemotherapy and those on dialysis going to the dialysis center several days a week for dialysis.

Some are not. A current topic of similarity was an eye opener for me. I am 72 years old and have never had a transfusion before last Monday. I’d gone to the Research Institute where I’m part of a clinical trial for a simple non-chemotherapy day checkup. This supposedly two hour appointment turned into almost eight hours. Why?

If you can understand these labs, you’ll know. If not, no problem. You know I’ll explain.

Component Your Value Standard Range
  RBC 2.23 10ˆ6/uL 3.50 – 5.40 10ˆ6/uL
Hemoglobin 6.8 g/dL 12.0 – 16.0 g/dL
Hematocrit 19.7 % 36.0 – 48.0 %
RDW 16.0 % 11.5 – 14.5 %
Platelets 15 K/uL 130 – 450 K/uL

Let’s start at the top of the list. RBC stands for red blood cells. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5260 tells us:

“Red blood cells: The blood cells that carry oxygen. Red cells contain hemoglobin and it is the hemoglobin which permits them to transport oxygen (and carbon dioxide). Hemoglobin, aside from being a transport molecule, is a pigment. It gives the cells their red color (and their name).

The abbreviation for red blood cells is RBCs. Red blood cells are sometime simply called red cells. They are also called erythrocytes or, rarely today, red blood corpuscles.”

So it makes sense that if RBC is below the standard range (column on the right), the hemoglobin will also be. And where are RBCs produced? Let’s trot on over to the National Institute of Diabetes, Digestive, and Kidney Disease (NIKKD) at https://www.niddk.nih.gov/health-information/kidney-disease/anemia for the answer to that one:

“Healthy kidneys produce a hormone called erythropoietin (EPO). A hormone is a chemical produced by the body and released into the blood to help trigger or regulate particular body functions. EPO prompts the bone marrow to make red blood cells, which then carry oxygen throughout the body.

What causes anemia in chronic kidney disease?

When kidneys are diseased or damaged, they do not make enough EPO. As a result, the bone marrow makes fewer red blood cells, causing anemia. When blood has fewer red blood cells, it deprives the body of the oxygen it needs.”

Now, this is not saying all CKD patients will have anemia, although it is common is the later stages of the disease. Chemotherapy had a lot to do with this, too.

What about this hematocrit? What is that? I went to the University of Rochester’s Health Encyclopedia at https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=hematocrit for help here:

“This test measures how much of your blood is made up of red blood cells.

Normal blood contains white blood cells, red blood cells, platelets, and the fluid portion called plasma. The word hematocrit means to separate. In this test, your red blood cells are separated from the rest of your blood so they can be measured.

Your hematocrit (HCT) shows whether you have a normal amount of red blood cells, too many, or too few. To measure your HCT, your blood sample is spun at a high speed to separate the red blood cells.”

MedicalNewsToday at https://www.medicalnewstoday.com/articles/321568.php helps us understand the RDW or red cell distribution width:

“If the results of a CBC [Gail here: that’s the complete blood count.] show low levels of red blood cells or hemoglobin, this usually suggests anemia. Doctors will then try to determine the cause of the condition using the RDW and other tests.”

So, we’re back to anemia. By the way, cancer is one of the diseases that can cause high numbers on your RDW. CKD is not, but diabetes – one of the primary causes of CKD – is.

I added platelets to the list since they are such an integral part of your blood. MedLinePlus at https://medlineplus.gov/plateletdisorders.html explains succinctly just what they are and what they do:

“Platelets, also known as thrombocytes, are small pieces of blood cells. They form in your bone marrow, a sponge-like tissue in your bones. Platelets play a major role in blood clotting. Normally, when one of your blood vessels is injured, you start to bleed. Your platelets will clot (clump together) to plug the hole in the blood vessel and stop the bleeding. You can have different problems with your platelets:

If your blood has a low number of platelets, it is called thrombocytopenia. This can put you at risk for mild to serious bleeding. The bleeding could be external or internal. There can be various causes. If the problem is mild, you may not need treatment. For more serious cases, you may need medicines or blood or platelet transfusions….”

I had my second infusion of platelets along with my first transfusion last week.

I’ve offered a multitude of definitions today. The point here is that both CKD patients and chemotherapy patients (and others suffering from a host of maladies) may need transfusions.

Right. I haven’t discussed what a transfusion is yet. Dictionary.com at https://www.dictionary.com/browse/transfusion defines it a little simplistically for us:

“the direct transferring of blood, plasma, or the like into a blood vessel.”

The MayoClinic at https://www.mayoclinic.org/tests-procedures/blood-transfusion/about/pac-20385168 adds:

“Your blood will be tested before a transfusion to determine whether your blood type is A, B, AB or O and whether your blood is Rh positive or Rh negative. The donated blood used for your transfusion must be compatible with your blood type.”

That’s when we discovered my son-in-law and I have the same blood type. Nice to know… just in case, you understand.

Before I leave you today, I want to remind my USA readers that this is Memorial Day. Having married a veteran, I now understand that we are honoring those who gave their saves to preserve ours no matter how long ago or how recent. Please give them a moment of your thoughts.

Until next week,

Keep living your life!

Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

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!

Oh, the Places You’ll Go!

Thank you to Dr. Seuss for lending us the title of today’s blog. Oh, you haven’t heard of him yet? According to Encyclopaedia Britannica at https://www.britannica.com/biography/Dr-Seuss:

“Dr. Seuss, pseudonym of Theodor Seuss Geisel, (born March 2, 1904, Springfield, Massachusetts, U.S.—died September 24, 1991, La Jolla, California), American writer and illustrator of immensely popular children’s books, which were noted for their nonsense words, playful rhymes, and unusual creatures.”

And why begin the blog with the title of his book you ask. Last month, I received an email from booknowmed.com. Now, I’m not endorsing this new company since I’m not on dialysis and so have not made use of their services myself. However, after reading about the difficulties my dialysis readers were having finding a clinic while they traveled, I was intrigued. Could this be another way to lessen the burden of being on dialysis?

This is from that email:

“What is booknowmed.com?

Whether you travel for holidays or for work, with booknowmed.com you can now find dialysis clinics that have availability for your treatment dates and book your treatments on the spot, anywhere in the World. And most importantly, booknowmed.com is FREE for patients.

  • Browse 440+ dialysis centers, in 380 destinations across 5 continents.
  • Find clinics that have availability based on your search criteria.
  • Know the price of treatment, before booking.
  • See ratings and read reviews from previous patients at the clinic.
  • Book your treatments on the spot in safety.
  • No booking fees, no hidden costs.
  • Track the progress of your booking, directly from your account.

Booknowmed.com is supported by the European Union and 60 national Kidney Patient Associations globally.”

Based on this alone, I asked Vassia Efstathiou, the User Experience Manager, if she’d be interested in guest blogging… and she was.  This is what she had to say, with just a bit of editing from me.

“Free booking engine for dialysis treatments? Dream or reality?

Travelling while on dialysis is a challenge on its own. Consider having to research, book and coordinate your dialysis treatments abroad. This process can be particularly stressful for dialysis patients, especially when faced with language barriers, lack of information – like the availability of clinics and cost of treatments- and, of course, safety concerns.

Many dialysis patients know this already but the power of the Internet alone cannot do much in this case. So it is definitely good news to hear that the first booking engine for holiday dialysis is live, and even better news to see that it actually works. Let alone the fact that it is free for patients!

Since its launch, thousands of dialysis patients have used booknowmed.com to book more than 27,000 treatments around the globe.

booknowmed.com allows dialysis patients to browse, find and book their dialysis treatments anywhere in the World. We are talking literally – anywhere.

By visiting booknowmed.com you will be able to browse more than 450 dialysis centers in 380 destinations, across five continents. This includes standard holiday options like Spain, Greece, and Turkey, as well some less ordinary destinations like Bali, Sri Lanka, Miami, Brazil and Argentina. Cuba, Barbados, and Curacao are coming up this month.

Bookings are completely free for patients, meaning there are no booking or other hidden costs. Overall the platform is very user-friendly and the booking process is very simple:

  1. Patients select their treatment dates and desired destination.
  2. They are then presented with a list of the clinics that match their search criteria and – most importantly – have availability for the requested dates.
  3. Booking is completed after a simple registration process, which is there for safety reasons. The process takes three minutes and includes registering the patient’s full name, email, and telephone number.

But let’s examine what differentiates booknowmed.com to the online directories currently available to dialysis patients.

Firstly, we are talking about a booking engine where you can book your treatments on the spot. In contrast to online directories, booknowmed.com allows you to know the availability and price before booking. You can select your exact treatment dates and preferred shift, and complete your booking without picking up the phone or waiting for a reply that takes weeks. Consider that the average booking time on booknowmed.com is six minutes compare to 15 days, the average booking time when you contact the clinic directly or go through a directory service.

Secondly, you have a wide variety of options to choose from, not only in terms of destination but also in terms of the type of the medical facility. booknowmed.com offers the largest network of independent dialysis centers. From global leaders – like Diaverum – to public and private hospitals as well as independent state-of-the-art clinics around the globe.

Thirdly, the simplicity of the booking process itself.

And last, but definitely not least, the great features offered to patients, which promote transparency and allow them to have all the information in hand before booking. These include:

  • Know the price of treatment before booking.
  • Use smart filters to narrow down your research. If you are an EU patient, for example, you can select to be presented with only the clinics that accept the EHIC.
  • See ratings and read reviews written by real patients who have completed treatment at this particular clinic.
  • Track the progress of your booking through your account. All the details of the booking including the exact time frame of the treatment, contact details of the clinic, and even a map with instructions on how to get there can be found in your account.

booknowmed.com was created by professionals with years of expertise in renal healthcare and the goal to serve a true need for patients. It has received the support of the European Union as well as of national kidney patient associations globally.

The company has plans to expand the functionalities of the platform, with the goal to become a 360o platform serving various everyday needs of renal patients, from nutrition and supplements to an online database and the online exchange of medical reports.

booknowmed.com is the living proof that we have entered a new era for dialysis patients, who can now find and book treatments abroad, with no hassle, no risk, and no language barriers.

Gail here, hoping this is exactly what you’ve been looking for to make your travel while on dialysis an easier experience for you.

Until next week,

Keep living your life!

 

CKD and Me

Okay, so I was finally ready to give up World Kidney Day and National Kidney Month. Maybe it’s time to give up the 1in9 chapter contribution, too. Since each contributing author also had their biography accompanying their chapter, I think the best way to do that is to print the biography… although it’s all me, me, me. Indulge me, please.

*****

Ms. Rae-Garwood’s writing started out as a means to an end for a single parent with two children and a need for more income than her career as a NYC teacher afforded. Gail retired from both college teaching and acting – after a bit of soul searching about where her CKD limited energy would be best spent – early in 2013. Since her diagnose, Ms. Rae-Garwood writes most often about Chronic Kidney Disease, although she does write fiction. She has a three time award winning weekly blog (Surprise!) about this topic at https://gailraegarwood.wordpress.com and social media accounts as @SlowItDownCKD.

*****

Hmmm, it seems to me I’ve done a lot more with Chronic Kidney Disease awareness advocacy since I started with this in 2010. Let’s see what else there is. Aha! These are on my website at www.gail-raegarwood.com.

 

Arizona Health & Living  (West Valley)  6/2018

 

MyTherapy Guest Blog    3/8/18

eCareDiary: Coping with Chronic Kidney  Disease  3/06/18

NephJC: One More Patient Voice on CKD Staging and Precision Medicine  12/08/16

 

Center for Science in the Public Interest: Nutrition Action Healthletter   9/16

New York State United Teachers: It’s What We Do   8/9/16

American Kidney Fund: Slowing DownCKD – It Can Be Done   7/14/16

The Edge Podcast  5/19/16

Dear Annie   3/10/14

Renal Diet Headquarters Podcast   2/12/14

 

Accountable Kidney Care Collaborative: Bob’s Blog   1/23/14

Wall Street Journal: Patients Can Do More to Control Chronic Conditions  1/13/14

The Neuropathy Doctor’s News   9/23/13

Series of five Monthly CKD education classes in The Salt River Pima-Maricopa

Indian Community   9/12/13

 

KidneySteps: Gail Rae and SlowItDown  9/11/13

Salt River Pima-Maricopa Indian Community: 4th Annual Men and Women’s Gathering  8/29/13

National Kidney Foundation: Staying Healthy  6/6/13

KidneySteps: Learning Helps with CKD    7/04/12

Life Options Links for Patients and Professionals   5/30/12

It Is Just What It Is    3/9/12

Online with Andrea    03/07/12

 

Working with Chronic Illness  2/17/12

 

Libre Tweet Chat with Gail Rae   1/10/12

Kevinmd.com   1/1/12

Improve Your Kidney Health with Dr. Rich Snyder, DO   11/21/11

Glendale Community College Gaucho Gazette   8/22/11

 

The NephCure Foundation   8/21/11

Authors Show Radio    8/8/11

Renal Support Network: Another 30 Years  1/11/10

Working with Chronic Illness: Are You Aching to Write    1/11/10

I’m going to keep today’s blog very short so you have the time to click though on the hyperlinked podcasts and articles. When I was teaching college, my students thoroughly enjoyed the time to choose what they’d like to hear or read from a prescribed list. I hope it’s the same for you.

Until next week,

Keep living your life!

I’m Finally Ready to Let National Kidney Month Go

As you already know, I’ve been posting the chapter I contributed to the book 1in9 as my contribution to National Kidney Month. This will probably be the final post of that chapter, unless I decide to post the biography that goes along with the chapter at a later date.

Most of you are aware that I now have pancreatic cancer and the chemo effects are getting in my way. I’m hoping that I’ll not be feeling them so severely in the near future and will be able to research some new material for you. Right now, that’s just not possible. You may have noticed that my Twitter, Instagram, and Facebook pages no longer contain original posts. That’s due to the same reason.

But let’s complete the book chapter:

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books of this type have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year.

I include guest blogs or book review blogs to get a taste of the currently available CKD news. For example, 1in9 guest blogged this year. Books such as Dr. Mandip S. Kang’s, The Doctor’s Kidney Diets (which also contains so much non-dietary information that we – as CKD patients – need to know), and Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers about Kidney Disease and Hypertension.

I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook Chronic Kidney Disease Support Groups. Some of these groups are:

Chronic Kidney Disease Awareness

Chronic Kidney Disease in India

CKD (Kidney Failure) Support Group International

Dialysis & Kidney Disease

Friends Sharing Positive Chronic Kidney Disease

I Hate Dialysis

Kidney Disease Diet Ideas and Help

Kidney Disease Ideas and Diets1

Kidney Disease is not a Joke

Kidney Disease, Dialysis, and Transplant

Kidney Warriors Foundation

Kidneys and Vets

Mani Trust

Mark’s Private Kidney Disease Group

P2P

People on Dialysis

Sharing your Kidney Journey

Stage 3 ‘n 4 Kidneybeaners Gathering Place

The Transplant Community Outreach

UK Kidney Support

Women’s Renal Failure

Wrap Up Warm for Kidney Disease

What I hit over and over again in the blogs is that diabetes is the foremost cause of CKD with hypertension as the second most common cause. Simple blood and urine tests can uncover your CKD – if you’re part of the unlucky 96% of those in the early stages of the disease who don’t know they have it.

Each time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools you have at your disposal to help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

I was surprised to discover that writing my SlowItDownCKD book series, maintaining a blog, Facebook page, Twitter, Instagram, and Pinterest accounts of the same name are not enough for me for me to spread the word about CKD screening and education. I’m determined to change this since I feel so strongly that NO ONE should have this disease and not be aware of it.

That’s why I’ve brought CKD awareness to every community that would have me: coffee shops, Kiwanis Clubs, independent bookstores, senior citizen centers, guest blogging for the likes of The American Kidney Fund and The National Kidney Foundation, being interviewed by publications like the Wall Street Journal’s Health Matters, The Center for Science in The Public Interest, and The United Federation of Teachers’ New York Teacher, and on podcasts such as The Renal Diet Headquarters, Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Health.

I’ve been very serious about sharing about CKD before it advances to end stage… meaning dialysis. To that end, I gathered a team for the National Kidney Foundation of Arizona Kidney Walk one year. Another year, I organized several meetings at the Salt River Pima-Maricopa Indian Community. Education is vital since so many people are unaware they even have the disease.

You can slow down the progression of the decline of kidney function. I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for over a decade despite having both high blood pressure and diabetes. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this.

Thanks for taking the time to finish the chapter. The more people who know about Chronic Kidney Disease, the more people can tell others about it. I’d hate for anyone to be part of the 90% of those with CKD who don’t know they have it.

Until next week,

Keep living your life!

National Kidney Month Extended

The chapter I contributed to 1in9 goes on beyond National Kidney Month, so since I think every day should be World Kidney Day, I decided to just keep printing it until it was finished. Gotcha! Bet you thought I was going to write every month should be National Kidney Month. Although, that’s not a bad idea either. So, for those of you just tuning in, this is actually part three of that chapter. You can just scroll back on the blog to read the first two parts. Ready? Let’s go.

*****

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

But, I had to be oh-so-vigilant with other medical practitioners. One summer I had four different infections and had to quickly research the medications prescribed in the emergency room. One hospital insisted I could take sulfa drugs because I was only stage 2 at the time. My nephrologist disagreed. They also prescribed a pain killer with acetaminophen in it, another no-no for us.  I didn’t return to them when I developed the other infections.

My experience demonstrates that you can slow down CKD. I was diagnosed at stage 3 and I am still there, over a decade later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 72 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

At the time of my diagnosis, I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for the unwitting mistakes I made, but they were learning experiences.

My less-than-stellar experience with being diagnosed and the first nephrologist are what prompted me to write What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Why, I wondered, should any new CKD patient be as terrified as I was? Of course, I constantly remind my readers that I’m not a doctor and they need to consult their nephrologists or renal dietitians before making any changes to their regiment.

I didn’t feel… well, done with sharing or researching once I finished the book so I began writing a weekly blog: SlowItDownCKD. Well, that and because a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their communities. It would work!

But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming. I now have readers in something like 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor. The blog has won several awards. Basically, that’s because I write in a reader friendly manner. After all, what good is all my researching if no one understands what I’m writing?

Non-tech savvy readers asked if I could print the blogs; hence, the birth of the SlowItDownCKD series of books. Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed. I couldn’t stand the thought of others being in the same position.

One of my daughters taught me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello, LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Enter Instagram. My step-daughters love Pinterest. That got me to thinking and suddenly SlowItDownCKD had a Pinterest account. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

*****

There’s more and you’ll get to read it next week. I hope you’re enjoying your look into how I entered the world of Chronic Kidney Disease Awareness Advocacy.

Until next week,

Keep living your life!

To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

Until next week,
Keep living your life!

From a Book…

I was trying to figure out a new angle from which to write about Chronic Kidney Disease during National Kidney Month and decided that my chapter in the newly released 1in9 just might be the way.

By the way, I really don’t like shopping, but did so for a ‘fancy blouse’ for the fancy book launch. The day of the launch turned out to be the day I unexpectedly had anesthesia and I ended up not being able to go. From the pictures I’ve seen of the event, it was a fun event. Now I need another fun event to wear that ‘fancy blouse’ to.  After all, we can’t let a dreaded shopping trip go to waste, can we?

Without further ado, I present the first part of my 1in9 chapter:

My name is Gail Rae-Garwood. I like to think of myself as an average older woman with two adult daughters, a fairly recent husband, and a very protective dog. But I’m not. What makes me a little different is that I have Chronic Kidney Disease… just like the estimated 30 million or 15% of the adult population in the United States. Unlike 96% of those in the early stages of the disease, I know my kidneys are not functioning well.

Once upon a time, a long, long time ago, before I’d ever heard the word nephrology, I paid no attention to my kidneys. I had just a vague idea of where they were located because I had big brothers. Every time they watched boxing, one or the other of them would yell, “Oh! Right in the kidneys!” when one guy hit the other on the back, sort of near the waist.  My mother attempted to feed us kidney beans once or twice, but three voices chorusing the 1950’s equivalent of “Uh, gross!” was enough to convince her they weren’t that necessary. My father had a friend who’d moved up in the world and had a kidney shaped pool. Of course, I never had a bird’s eye view of that as a child. So, we were a family pretty much ignorant about kidneys.

When I grew up, I never let my children watch boxing; it was too violent. I never even tried to feed them kidney beans, probably due to some residual abhorrence left over from my own childhood. I had no friends with kidney shaped pools, but I had flown in an airplane and could recognize one if we were flying low. That was the sum total of my kidney education. I didn’t even recall if they were covered in high school biology. My daughters, now grown women, said they were, but I didn’t remember anything about that.

I was blindsided over a decade ago. That’s when I started seeing a new doctor solely because she was both on my insurance plan and so much closer to home than the one I’d been seeing. It seems everything is at least half an hour away in Arizona; her office wasn’t. As a diligent primary care physician, she ordered a whole battery of tests to verify what she found in my files which, by the way, contained a kidney function reading (called the GFR) of 39%. That was something I’d never been told about.

39%. I’d been a high school teacher for 35 years at that point. If a student had scored 39% on a test, we would have talked and talked until we had gotten to the root of the problem that caused such a low score. No one talked to me about my low kidney function until I changed doctors.

“That’s not normal,” said my new doctor as she looked at my blood test results.

I made the supreme effort of tearing my eyes away from the height and weight chart to ask, “What’s not normal?”

“Your GFR,” she told me.  I looked at her blankly. (In retrospect, I can understand how hard it probably was for her not to laugh at my empty eyes and a face without a shred of interest showing on it.) I said nothing. She said nothing.

Finally, I asked, “What’s that?”  She gave me a simple explanation with no indication that I should panic in any way, but of course I did.

“It’s what!  It’s below normal?  My kidneys aren’t functioning to full capacity? Why wasn’t I told? What do I do now? How do I fix the problem? I want them at 100%.”

Her voice rose over mine in a steady, sure manner. “This does not mean there is a problem. It means you must go to a specialist to see if there really is a problem.”

“Oh.” I didn’t believe her, but she not only talked, she had me in a nephrologist’s (kidney and hypertension specialist) office the next day. That’s when I started worrying. Who gets an appointment with a specialist the very next day? I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow down the progression in the decline of my kidney function immediately.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when CKD patients are most shocked, confused, and maybe even depressed—and the stages at which they have a workable chance of doing something to slow down the progression in the decline of their kidney function.

This first nephrologist might have been reassuring, but I’ll never know. I was terrified; he was patriarchal. All I heard was, “I’ll take care of your kidneys. You just do as I say,” or something to that effect.

Nope, wrong doctor for me. I wanted to know how medication, diet, exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching. (More about that later.) You see, I’d already had a terrific Dad who’d known better than to ask me to give up control of myself. I didn’t need a doctor assuming his role… especially in a way I resented.

… to be continued. (This will take several weeks. It is a chapter in book, so it’s longer than my usual 1,000 or so word blog.)

Until next week,

Keep living your life!

World Kidney Day, 2019

Will you look at that? The world keeps moving on no matter what’s going on in our personal lives. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update last year’s World Kidney Day blog… so sit back and enjoy the read.

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only thirteen years ago that it was initiated.

 

According to http://worldkidneyday.org,

World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys.”

Sound familiar?  That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; SlowItDownCKD 2013; SlowItDownCKD 2014; SlowItDownCKD 2015; SlowItDownCKD 2016; SlowItDownCKD 2017; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction.

The 59 year old International Society of Nephrology (ISN) – a non-profit group spreading over 155 countries – is one part of the equation for their success.  Another is the International Federation of Kidney Foundations with membership in over 40 countries. Add a steering committee and The World Kidney Day Team and you have the makings of this particular concept….

According to their website at https://www.theisn.org/advocacy/world-kidney-day :

“The mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

Objectives:

  • Raise awareness about our ‘amazing kidneys’
  • Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
  • Encourage systematic screening of all patients with diabetes and hypertension for CKD
  • Encourage preventive behaviors
  • Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations
  • Stress the important role of local and national health authorities in controlling the CKD epidemic.”

While there are numerous objectives for this year’s World Kidney Day, the one that lays closest to my heart is this one: ‘Encourage systematic screening of all patients with diabetes and hypertension for CKD.’

Back to World Kidney Day’s website at https://www.worldkidneyday.org  now, if you please.

This year’s theme is Kidney Health for Everyone Everywhere.

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are.

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures.

If only my nurse practitioner had been aware of National Kidney Month or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was a dozen years ago. This shouldn’t still be happening… but it is.

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately.

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD.

What a waste of the precious time he could have had to do more than stop smoking, which he did (to his credit), the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so.

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 60 places you in a high risk group, I wonder how many of her friends were included in the 96% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware.

For those of you who have forgotten (Easily read explanations of what results of the different items on your tests mean are in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease.), all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem.

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit “Apps” on the Topics Dropdown. None of us needs to hear another sorrowful, “If only I had known!”

Until next week,

Keep living your life!

National Kidney Month, 2019

Anyone remember LOL? It’s older internet shorthand for Laughing Out Loud. That’s what I’m doing right now. Why? Because, after all these years of blogging, I’ve just realized that I compose my opening paragraph as I’m waking up. Still in bed, mind you. Still half asleep. Isn’t the brain wonderful?

This is my half asleep composition for this morning: March is National Kidney Month. That’s not to be confused with March 14th, which is World Kidney Day. So, today, we address the nation. Next week, the world.

As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month.

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing (sic) with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.” That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 30 million Americans who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed. During National Kidney Month in March, and in honor of World Kidney Day on March 14, the NKF offers the following health activities to promote awareness of kidneys, risk factors and kidney disease:

  • Free Screenings: On World Kidney Day and throughout the Month of March, NKF is offering free screenings to those most at risk for kidney disease – anyone with diabetes, high blood pressure or a family history of kidney failure. Locations and information can be found on the calendar on our website.
  • ‘Are You at Risk’ Kidney Quiz: Early detection can make a difference in preventing kidney disease so it’s important to know if you’re at risk. Take the online kidney quiz!
  • Live Twitter Chat with Dr. Joseph Vassalotti: The National Kidney Foundation’s Chief Medical Officer, Dr. Joseph Vassalotti, will be hosting an interactive kidney Q&A on World Kidney Day, Thursday, March 14, from 12-2 pm ET. Ask your questions at www.twitter.com/nkf using the hash-tag #WorldKidneyDayNKF.”

Wow, so much going on. This is also the month of kidney walks, like the one my daughter Nima participated in on the East Coast in my honor, or the one for which I organized a team several years ago. Actually, it’s the month specifically for anything and everything that will raise awareness of kidney disease. I’ve mentioned that I contributed a chapter to the book 1in9, which is about kidney disease. You’re right. The book launch is this month, March 6th to be specific.

The American Kidney Fund at http://www.kidneyfund.org/take-the-pledge/ is also taking part in National Kidney Month. They have a form to fill out to take a pledge to fight kidney disease.  I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease. I wanted to share this quote from the AKF with you, both as a CKD awareness advocate and a woman:

“‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’”

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

“March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.”

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

“Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.”

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s title assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook,Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease.

Until next week,

Keep living your life!

Pancreas + Kidneys = ?

31 years ago, my father died of pancreatic cancer. For some reason, I remember him asking me what electrolytes were as soon as he was diagnosed. I didn’t know. I do now, but I don’t know if there’s a connection between the pancreas and the kidneys. Of course, I mean other than the fact that they are all organs in your body.

Oh, sorry, I didn’t give you the definition. This is from Healthline at https://www.healthline.com/nutrition/electrolytes  :

“’Electrolyte’ is the umbrella term for particles that carry a positive or negative electric charge ….

In nutrition, the term refers to essential minerals found in your blood, sweat and urine.

When these minerals dissolve in a fluid, they form electrolytes — positive or negative ions used in metabolic processes.

Electrolytes found in your body include:

  • Sodium
  • Potassium
  • Chloride
  • Calcium
  • Magnesium
  • Phosphate
  • Bicarbonate

These electrolytes are required for various bodily processes, including proper nerve and muscle function, maintaining acid-base balance and keeping you hydrated.”

Ummm, you have Chronic Kidney Disease. These are the electrolytes you need to keep an eye on, especially sodium, potassium, and phosphate. But why did Dad ask me about them?

I plunged right in to find the answer and immediately found a journal article… on a pay site. Not being one to pay for what can be found for free (and is 30 years old, by the way), I decided to look for as much information on the pancreas as I could find and see what we could figure out together.

Let’s start at the beginning. According to the Sol Goldman Pancreatic Cancer Research Center of Johns Hopkins Medicine – Pathology at http://pathology.jhu.edu/pc/basicoverview1.php?area=ba:

“What is the pancreas?

The pancreas is a long flattened gland located deep in the belly (abdomen). Because the pancreas isn’t seen or felt in our day to day lives, most people don’t know as much about the pancreas as they do about other parts of their bodies. The pancreas is, however, a vital part of the digestive system and a critical controller of blood sugar levels.

Where is the pancreas?

The pancreas is located deep in the abdomen. Part of the pancreas is sandwiched between the stomach and the spine. The other part is nestled in the curve of the duodenum (first part of the small intestine). To visualize the position of the pancreas, try this: touch your right thumb and right ‘pinkie’ fingers together, keeping the other three fingers together and straight. Then, place your hand in the center of your belly just below your lower ribs with your fingers pointing to your left. Your hand will be the approximate shape and at the approximate level of your pancreas.”

I tried that. It’s not as easy as it sounds.

So now we sort of know what and where it is, but what does it do? No problem, Columbia University Irving Medical Center has just the info we need at http://columbiasurgery.org/pancreas/pancreas-and-its-functions:

“Exocrine Function:

The pancreas contains exocrine glands that produce enzymes important to digestion. These enzymes include trypsin and chymotrypsin to digest proteins; amylase for the digestion of carbohydrates; and lipase to break down fats. When food enters the stomach, these pancreatic juices are released into a system of ducts that culminate in the main pancreatic duct. The pancreatic duct joins the common bile duct to form the ampulla of Vater which is located at the first portion of the small intestine, called the duodenum. The common bile duct originates in the liver and the gallbladder and produces another important digestive juice called bile. The pancreatic juices and bile that are released into the duodenum, help the body to digest fats, carbohydrates, and proteins.

Endocrine Function:

The endocrine component of the pancreas consists of islet cells (islets of Langerhans) that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.”

The kidneys? Now it’s starting to make sense. We need whatever specific electrolyte balance our lab work tells us we need to keep our kidneys working in good stead and we need a well-functioning pancreas to regulate our blood sugars. Hmmm, diabetes is one of the two leading causes of CKD. It seems the pancreas controls diabetes since it creates insulin.

What could happen if the pancreas wasn’t doing its job, I wondered.  This is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227,

“Pancreatitis [Me here: that’s an inflammation of the pancreas] can cause serious complications, including:

  • Pseudocyst. Acute pancreatitis can cause fluid and debris to collect in cystlike pockets in your pancreas. A large pseudocyst that ruptures can cause complications such as internal bleeding and infection.
  • Infection. Acute pancreatitis can make your pancreas vulnerable to bacteria and infection. Pancreatic infections are serious and require intensive treatment, such as surgery to remove the infected tissue.
  • Kidney failure. Acute pancreatitis may cause kidney failure, which can be treated with dialysis if the kidney failure is severe and persistent.
  • Breathing problems. Acute pancreatitis can cause chemical changes in your body that affect your lung function, causing the level of oxygen in your blood to fall to dangerously low levels.
  • Diabetes. Damage to insulin-producing cells in your pancreas from chronic pancreatitis can lead to diabetes, a disease that affects the way your body uses blood sugar.
  • Malnutrition. Both acute and chronic pancreatitis can cause your pancreas to produce fewer of the enzymes that are needed to break down and process nutrients from the food you eat. This can lead to malnutrition, diarrhea and weight loss, even though you may be eating the same foods or the same amount of food.
  • Pancreatic cancer. Long-standing inflammation in your pancreas caused by chronic pancreatitis is a risk factor for developing pancreatic cancer.

Did you catch kidney failure and diabetes? I believe we now know how the kidneys and pancreas are related to each other. Ah, if only I’d known how to research 31 years ago….

Until next week,

Keep living your life!

Kidney Anxiety

I clearly remember writing about how depression, grief, and stress affect your kidneys, but not about anxiety. As Bear’s pain worsens, there’s a lot of that in my house recently. I don’t understand why it’s taking so long for his doctors to decide upon a treatment plan for him, but while they do I am one anxious person.

I went directly to my old friend, the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961 for a set of anxiety symptoms:

“Common anxiety signs and symptoms include:

  • Feeling nervous, restless or tense
  • Having a sense of impending danger, panic or doom
  • Having an increased heart rate
  • Breathing rapidly (hyperventilation)
  • Sweating
  • Trembling
  • Feeling weak or tired
  • Trouble concentrating or thinking about anything other than the present worry
  • Having trouble sleeping
  • Experiencing gastrointestinal (GI) problems
  • Having difficulty controlling worry
  • Having the urge to avoid things that trigger anxiety”

While I don’t have all these symptoms, there are at least four or five of them I can identify with.

Wait a minute. Maybe I’m barking up the wrong tree. Is my worry about Bear’s pain really causing anxiety? I popped over to Medical News Today at https://www.medicalnewstoday.com/articles/323456.php for some help in figuring out just what it is that causes anxiety.

  • Environmental factors: Elements in the environment around an individual can increase anxiety. Stress from a personal relationship, job, school, or financial predicament can contribute greatly to anxiety disorders. Even low oxygen levels in high-altitude areas can add to anxiety symptoms.
  • Genetics: People who have family members with an anxiety disorder are more likely to have one themselves.
  • Medical factors: Other medical conditions can lead to an anxiety disorder, such as the side effects of medication, symptoms of a disease, or stress from a serious underlying medical condition that may not directly trigger the changes seen in anxiety disorder but might be causing significant lifestyle adjustments, pain, or restricted movement.
  • Brain chemistry: Stressful or traumatic experiences and genetic factors can alter brain structure and function to react more vigorously to triggers that would not previously have caused anxiety. Psychologists and neurologists define many anxiety and mood disorders as disruptions to hormones and electrical signals in the brain.
  • Use of or withdrawal from an illicit substance: The stress of day-to-day living combined with any of the above might serve as key contributors to an anxiety disorder.

There are items on this list which I hadn’t considered before. Years ago, when I was teaching in an old vocational high school, a student holding one of those long, heavy, solid oak window poles to open very high windows quickly spun around to answer a question and accidentally hit me in the head with the pole. That was certainly traumatic and also one of the few times I’ve been hospitalized.

We’ve pretty much figured out that there is an undiagnosed history of anxiety in the family. I’m referring to people from past generations who faced pogroms, the Depression, and even having to give up babies for adoption since that’s what was done with babies from unwed mothers in that generation. Could these folks have had anxiety disorders rather than environmental anxiety? Of course, we’ll never really know since they are long gone from this earth, but it is a thought.

Lightning Bolt!!! I remember visiting my buddy and her mother in San Miguel de Allende in Mexico not long after my own mother died and being anxious. I attributed it to still being in mourning for my mother. San Miguel de Allende has an elevation of 7,000 feet. Was that one of those “low oxygen levels in high-altitude area?” I didn’t know, but Laura Anderson author of the Gunnison Country Times’ article on Acli-Mate at https://acli-mate.com/living-at-altitude-the-pros-and-cons-of-a-high-altitude-lifestyle/ did:

“Low landers generally aren’t affected by altitude until they reach 4,500 to 5,000 feet. But after that, the affects (sic) of altitude are compounded about every 1,000 feet — so the affects (sic) of going from 6,000 feet to 7000 feet can feel the same as jumping from sea level to 4,500 feet.”

What in heaven’s name is this doing to my kidneys, I wondered. I was surprised to find an answer… in reverse. Rather than anxiety causing a kidney problem, it seems that fear of kidney disease can cause anxiety, or at least that’s what Calm Clinic at https://www.calmclinic.com/anxiety/kidney-problems claims. Be aware that they are a business and will try to sell to you if you go to their site.

  • Extra Urination Anxiety can cause more frequent urination. When you experience anxiety, the part of your brain that controls the withholding urination slows down because anxiety requires resources to be sent to other parts of your brain. This can lead to concerns over your renal health, although nothing is wrong.
  • Lower Back Pain Lower back pain is also very common with anxiety. Lower back pain comes from severe stress and tension, and yet it’s associated with some conditions that affect the kidneys as well which can have many people worried about their kidney health.
  • Life Experiences Anyone that suffers from anxiety and has had a friend or family member diagnosed with a terrible kidney condition is at risk for developing anxiety over the idea of poor kidneys. Anxiety can turn life experiences into very real concerns, and so kidney health concerns are one of the issues that can come up when you see it in others.”
  • Urine Color Urine color is another issue that can cause anxiety. Many people check their urine color for diseases habitually, and every once in a while the color of a person’s urine may be very different than what they expect. This can create concerns that the urine color changes are due to kidney problems.”

What I find interesting is that kidney disease can cause frequent urination, too. Kidney disease may also cause lower back pain. If you know any CKD patients, you know we’re always checking the color of our urine to make certain we’re well enough hydrated.

So it seems your fear of kidney disease may cause a symptom of kidney disease… and/or possibly diabetes. All I have to say to that is make sure you take the simple urine and blood test to determine if you do really have Chronic Kidney Disease or diabetes.

Until next week,

Keep living your life!

A Little Bit of This, A Little Bit of That

A long time reader mentioned she had a kind of kidney disease I wasn’t familiar with, so I decided to find out what I could about it. Are you aware of Uromodulin Kidney Disease?

This is what the U.S. National Library of Medicine at https://ghr.nlm.nih.gov/condition/uromodulin-associated-kidney-disease had to say:

“Uromodulin-associated kidney disease is an inherited condition that affects the kidneys. The signs and symptoms of this condition vary, even among members of the same family.

Many individuals with uromodulin-associated kidney disease develop high blood levels of a waste product called uric acid. Normally, the kidneys remove uric acid from the blood and transfer it to urine. In this condition, the kidneys are unable to remove uric acid from the blood effectively. A buildup of uric acid can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. The signs and symptoms of gout may appear as early as a person’s teens in uromodulin-associated kidney disease.

Uromodulin-associated kidney disease causes slowly progressive kidney disease, with the signs and symptoms usually beginning during the teenage years. The kidneys become less able to filter fluids and waste products from the body as this condition progresses, resulting in kidney failure. Individuals with uromodulin-associated kidney disease typically require either dialysis to remove wastes from the blood or a kidney transplant between the ages of 30 and 70. Occasionally, affected individuals are found to have small kidneys or kidney cysts (medullary cysts).”

Since this is inherited, I suspect the only way to prevent it is gene editing. I researched gene editing a bit but discovered there is quite a bit of controversy as to the legal and ethical aspects of this procedure right now. However, this doesn’t mean it isn’t possible.

The only other information I could find was far too technical for this lay person to understand, much less explain. Readers, do you have more information?

Something else that was new to me this week: pitaya or dragon fruit. I always buy myself a birthday present and this was mine for this year. By the way, thank you to all the readers who took the time to wish me well on my 72nd yesterday. Back to pitaya.

According to Healthline (Thank you again for the two awards.) at https://www.healthline.com/nutrition/dragon-fruit#what-it-is, pitaya is:

“Dragon fruit is a tropical fruit native to Mexico and Central America. Its taste is like a combination of a kiwi and a pear…. Dragon fruit is a low-calorie fruit that is high in fiber and provides a good amount of several vitamins and minerals…. Dragon fruit contains several antioxidants that protect your cells from damage. These include betalains, hydroxycinnamates, and flavonoids…. Animal studies suggest that dragon fruit may improve insulin resistance, liver fat, and heart health. However, the results of human studies are inconsistent…. To date, there have been two reported cases of a severe allergic reaction to dragon fruit.”

I like that it contains less sugar and calories than other tropical fruits, but I didn’t find the taste appealing. It was bland with just a hint of a woody aftertaste. Was it too ripe? Not ripe enough? Surprisingly, my Utah raised son-in-law loves it and jumped at the chance to finish mine.

I ran into what might have been more new information this past week when the P.A. taking my husband’s blood pressure used a wrist monitor on his right wrist. I was always told an arm cuff monitor was better because the pressure was only taken through one bone, whereas there are two in the wrist. I was also told that the left arm was best because it was closer to the heart. This advice was from my PCP’s nurse and that of my nephrologist. However, this P.A. insisted the wrist monitor measures atomic movement of the blood so it didn’t matter whether a wrist or arm cuff were used, nor which arm was used. It didn’t sound right to me.

This is from SlowItDownCKD 2014 and may be helpful here:

“Well, what about the different kinds of blood pressure monitors? I use a wrist monitor which my PCP is simply not thrilled with.  Her feeling is that I’m taking my pressure through two bones, the radius and the ulna, as opposed to only one bone, the humerus, with an arm device. There’s also the finger monitor, but that could be a problem if you have thin or cold fingers.

There are manual and battery operated versions of these monitors.  If you use an arm monitor, be aware that larger cuffs are available if needed. The one thing most blood pressure sites agree upon is that it’s not a good idea to rely on drugstore monitors for your readings.”

I have been researching for over two hours. I cannot find anything about atomic movement within the blood being measured by a blood pressure monitor of any kind. I’ve been to professional pages, checked studies, and even looked at advertisements. So, unless you have other information, I do believe I’ve been had. I just can’t wait to meet this young man at the follow up appointment in two weeks when I’ll ask him for resources and the monitor manufacturers’ information.

On another note, I’ve written about KDIGO during the last two years. This is from SlowItDownCKD 2017 and was repeated in the Sept. 17th blog in 2018.

“This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states:

KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.’”

So why mention it again, you ask? Well, you know how I’m always saying I’m not a doctor and neither are you, but doctors need to know what we, as kidney patients, need to say? KDIGO is now inviting patients – including those with CKD – to join their patient network. What better way to be heard as a kidney patient? I joined and I hope you will, too. The link to join is:

https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_72LdurS2QicQFKd.

This is the announcement the Dr. Joel Topf (on Twitter as @kidney_boy) brought to my attention:

Until next week,

Keep living your life!

I’ll be Glowing!

Not really, but that was my first thought when a nuclear medicine (NM) test was ordered for me. It required radioactive material to be injected into my veins. The test is called NM Hepatobiliary Scan with Pharmacologic Intervention.

Let’s get a definition of hepatobiliary before we do anything else. Thank you MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=19515 for this one:

“Hepatobiliary: Having to do with the liver plus the gallbladder, bile ducts, or bile. For example, MRI (magnetic resonance imaging) can be applied to the hepatobiliary system. Hepatobiliary makes sense since “hepato-” refers to the liver and “-biliary” refers to the gallbladder, bile ducts, or bile.”

That’s my kind of definition. Clear and easy for those of us who are not doctors to understand. It makes sense, too, since we were exploring what I called discomfort and my PCP called pain just under the lowest rib on my right side… very close to the gall bladder. The more than occasional nausea helped her to decide this test was necessary.

According to the test report, this is how it works:

“TECHNIQUE:

Frontal standing images of the abdomen and pelvis were obtained immediately and 30 minutes following the intravenous administration of Tc99m IDA. Pharmacologic intervention with CCK (or equivalent) and/or morphine with additional dynamic imaging was also performed.”

I didn’t know what Tc99mIDA or CCK was, so I’m guessing you don’t either.  Wikipedia at

https://en.wikipedia.org/wiki/Technetium_(99mTc)_mebrofenin  tells us,

“Technetium (99mTc) mebrofenin is a diagnostic radiopharmaceutical used for imaging of the liver and the gallbladder.”

Hmmm, we could have figured that out from the way the term is used in the context of the technique.

Let’s try CCK. This is also from Wikipedia but this time at https://en.wikipedia.org/wiki/Cholecystokinin.

“Cholecystokinin (CCK or CCK-PZ; from Greek chole, “bile”; cysto, “sac”; kinin, “move”; hence, move the bile-sac (gallbladder)) is a peptide hormone of the gastrointestinal system responsible for stimulating the digestion of fat and protein. Cholecystokinin, officially called pancreozymin, is synthesized and secreted by enteroendocrine cells in the duodenum, the first segment of the small intestine.” 

Well, that’s fairly explanatory, but keep in mind that Wikipedia entries can be edited by anyone.

I know, now you want to know the results. Back to the test report:

“HIDA scan:

Gallbladder clearly visualized. Gallbladder ejection fraction calculated at 37% at 30 minutes. Greater than 35% is normal.

Study Result Impression:

Gallbladder clearly visualized. Borderline abnormal gallbladder response to cholecystokinin challenge.”

Here’s where I got lost. If my gall bladder ejection fraction is normal, how can I have a borderline abnormal gall bladder response to cholecystokinin challenge? Yep, it’s time to make an appointment with my family doctor since she ordered these tests and, being who she is, can probably explain that in terms I can understand.  More on that after next week’s liver MRI and an appointment with her to discuss the findings of both tests.

While this is all interesting, what does it have to do with the kidneys? I went back to SlowItDownCKD 2013 to find out what I’d written about that after my New York daughter’s gall bladder was removed.

“After speaking with my daughter, I still wondered what gallstones have to do with Chronic Kidney Disease.  Searching the web only garnered this one article from January, 2009 … and the study only covered Taiwan. Of course, I found it at the National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/19352299.

‘The prevalence of gallbladder stones in patients with Chronic Kidney Disease is significantly higher than in those without Chronic Kidney Disease. Our findings suggest that increasing age, Chronic Kidney Disease, body mass index > or =27 kg/m {greater than 59 pounds}, metabolic syndrome, and cirrhosis are the related factors for gallbladder stone formation.’

Now think about it another way: you already have a compromised immune system because you have CKD.  Gallstones can cause infection of the gallbladder. As in Nima’s experience, infection causes white blood cell elevation. So you know you have an infection, you might even realize it could be in the bile ducts, too.  But did you check to see if there’s infection in other areas of your body? That would mean you can read your own test results or have the kind of relationship with your doctors – especially your nephrologist – to freely ask questions.

As for what this organ does, this is what MedlinePlus at https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=gall+bladder&_ga=2.56082859.126205281.1548540376-1108406265.1544652518 had to say.

‘Your gallbladder is a pear-shaped organ under your liver. It stores bile, a fluid made by your liver to digest fat. As your stomach and intestines digest food, your gallbladder releases bile through a tube called the common bile duct. The duct connects your gallbladder and liver to your small intestine.’

Keep in mind that your liver, the largest organ in your body {The skin is actually the largest organ, but it’s external.} is the other organ that filters your blood.  Since your CKD has been diagnosed, your liver is already working harder. Add losing your gallbladder and you’ve got one very hard working – possibly overworked – liver.”

Needless to say, while I was taking this in stride, especially since my kidney function is the best it’s been in the over a decade since I’ve been diagnosed with CKD, I am now eager to have the liver MRI and get back to my primary care doctor (PCP) so she can explain what a lay person can’t understand from reading the results-  even with further researching.

A few announcements, if you please:

Our friends at @antidote_me are hosting the first of their new free monthly patient focused webinars. This one is about how medical research really works and is this Wednesday, January 30th. It’s a 15 minute webinar.  Register now: https://hubs.ly/H0gc_KV0.

Also, I write the blogs from a U.S. angle since that’s where I live. There is a new Facebook CKD support group which is from the British angle. It’s Chronic Kidney Disease Support Group for UK! Another is CKD Support UK. These are only two of several from across the sea. If you’d like to find the others, go to Facebook and in the search bar on top, enter CKD Support in UK. That little word “in” is what makes it searchable.

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!

And Yet Again

I didn’t think I’d be writing about the flu this year, yet I am. Why? Because, despite thinking I was safe since I didn’t have it in December as usual, I have it now. Actually, I’m in the I-feel-like-an-old-dishrag stage now. Humph, that’s probably why it took me six days to do the laundry (I’m still not done with the putting away) and the dishes. We were lucky enough to have my daughter and new son-in-law do the marketing for us. But it was only then that it became apparent she has it, too.

I have written before about the fact that the flu shot doesn’t guarantee you won’t get the flu, but that if you are one of the unlucky ones to get the flu after the shot, it will not be as virulent. Thank goodness. It’s day seven and I’m just now reaching the stage where I can do something… writing, dishes, laundry…IF I get back into bed for at least an hour between tasks. To be honest, sometimes I have to interrupt those tasks to take that hour rest.

I have read some good murder mysteries and thrillers while listening to silence. Then I could tolerate the television and discovered Dr. Bramwell on Amazon Prime. Terrific for someone who loves Victoriana (I did write Portal in Time and am seriously considering the requests for a sequel.)

But what’s different about the flu and the flu shot this year, I wondered as soon as I felt better enough to wonder about anything. This is the latest information from the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/flu/spotlights/flu-season-updates-2018.htm. By the way, they have loads of information about this year’s flu season, but you may have to use the glossary which they so thoughtfully provide.

January 11, 2019 – With the 2018-2019 flu season well underway, CDC today estimated that so far this season, between about 6 million and 7 million people have been sick with flu, up to half of those people have sought medical care for their illness, and between 69,000 and 84,000 people have been hospitalized from flu. CDC expects flu activity to continue for weeks and continues to recommend flu vaccination and appropriate use of antiviral medications.

Flu vaccination is the first line of defense to prevent flu and its potentially serious complications, including death in children. Flu vaccines have been shown to be life-saving in children, in addition to having other benefits.  Flu vaccination has been shown in several studies to reduce severity of illness in people who get vaccinated but still get sick. Antiviral drugs are a second line of defense that can be used to treat flu illness. CDC recommends that people who are very sick or people who are at high risk of serious flu complications who develop flu symptoms should see a health care provider early in their illness for possible treatment with a flu antiviral drug.

CDC’s weekly FluView reports when and where influenza activity is occurring, what influenza viruses are circulating and their properties, and reports the impact influenza is having on hospitalization and deaths in the United States based on data collected from eight different surveillance systems.

So far this season, H1N1 viruses have predominated nationally, however in the southeast, H3N2 viruses have been most commonly reported. The number of states reporting widespread activity increased this week to 30 from 24 states last week. While levels of influenza-like-illness (ILI) declined slightly over the previous week in this week’s report, ILI remains elevated and 15 states and New York City continue to experience high flu activity. There also was a decline in the percent of respiratory specimens testing positive for flu at clinical laboratories however this number remains elevated also.  During some previous seasons, drops in ILI and the percent of specimens testing positive for flu have been observed following the holidays.”

Surprisingly to me, Business Insider at https://www.businessinsider.com/flu-shot-2018-effectiveness-availability-where-to-get-2018-9 answered my question about how the flu shot is different this year.

“The formulation has been changed in two key ways: the nasty H3N2 strain that sickened many people last year has been updated, and the influenza B virus targeted for protection in the vaccine has been changed, too. So far, the revamped vaccines look promising.

‘It appears that the virus is doing a little better job, if we look at what’s gone on in the southern hemisphere season,’ Webby said. [Richard Webby, an infectious disease expert at St Jude Children’s Research Hospital.]

Down south in Australia, for example, it’s been a fairly mild flu season, with flu activity circulating at ‘low’ levels, according to the Australian Department of Health. That may not perfectly translate to an equally mild flu season up north, but what Webby’s seen so far suggests that the shot is also combatting the flu better than it did last year.

Okay, I took the vaccine, am having a less virulent bout of the flu but it’s still here. Now what? The Kidney Foundation of Canada at https://www.kidney.ca/treating-the-common-cold-and-flu—tips-for-kidney-patients offered a succinct answer:

  1. For most people with kidney disease, acetaminophen(Tylenol®) is safe to use for headache, pain and fever.
  2. Cold and flu medications that contain decongestants may increase blood pressure. In addition, avoid cough and cold medications that contain ASA or NSAIDs (Non-steroidal anti-inflammatory medications) such as ibuprofen (Advil®, Motrin®) or naproxen (Aleve®). If you have to use a decongestant, use a nasal spray or nasal drops. (Note: these nasal sprays are habit forming. If you use them more than three days in a row, the blood vessels in your nose can become dependent on the spray.)
  3. Sore throat?Many cough syrups and throat lozenges contain sugar. Make sure you read the label to check the ingredients list, prior to use. Some sugar free or sucrose-free products are available on the market. Gargling with salt water may also be an effective way to soothe a sore throat.
  4. Avoid herbal remedies.Herbal medications and products are not regulated in the same way that pharmaceutical products are. Therefore, the list of ingredients is not always accurate and some herbal medicines have been found to contain pesticides, poisonous plants, hormones, heavy metals and other compounds that are potentially dangerous. Some herbal medications also include diuretics, high levels of potassium, and/or other ingredients that can affect the kidneys or interact with your prescription medications to change their effectiveness.
  5. Vitamin C is not the answer. High doses of vitamin C (500 mg or more) can cause damage to kidneys. There is a specially formulated multivitamin for people with kidney disease that has the right amount of vitamins that your kidneys can handle. Ask your healthcare team about this.

Questions?  Your pharmacist and members of your kidney health team are the best source of information. Ensure you read the label, even on over the counter medications that you’ve taken before, as ingredients do change from time to time. If you have severe symptoms that are lasting longer than 7 days, you should see your doctor.

Until next week,

Keep living your life!

At the Heart of the Matter

Happy New Year! Here’s wishing you all a very healthy one. I, on the other hand, found myself in the cardiologist’s office the very first week of 2019. That was odd for me.

It all started when I asked my very thorough primary care physician what – if anything – it meant that my blood pressure reading was ten points higher in one arm than the other. By the way, she’s the one that suggested I take my blood pressure on a daily basis. Her nurse always used the left arm to take the reading, so I did too. Then I got curious about what the reading on the other arm would be and how much difference there would be between arms. I expected a point or two, not ten.

Although my readings had always been a bit high, they weren’t high enough to warrant extra attention… until I mentioned the ten point difference to my PCP. BAM! I had an appointment with the cardiologist.

This information in last year’s April 23’s blog will explain why:

“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

So we know that blood pressure and heart rate are important for Chronic Kidney Disease patients. Just in case you’ve forgotten, heart rate is a synonym for pulse which is the number of times your heart beats a minute.

MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=154135 offers more about what the difference between readings from both arms MAY mean:

“People whose systolic blood pressure — the upper number in their reading — is different in their left and right arms may be suffering from a vascular disease that could increase their risk of death, British researchers report.

The arteries under the collarbone supply blood to the arms, legs and brain. Blockage can lead to stroke and other problems, the researchers noted, and measuring blood pressure in both arms should be routine.

‘This is an important [finding] for the general public and for primary care doctors,’ said Dr. William O’Neill, a professor of cardiology and executive dean of clinical affairs at the University of Miami Miller School Of Medicine.

‘Traditionally, most people just check blood pressure in one arm, but if there is a difference, then one of the arteries has disease in it,’ he said.

The arteries that run under the collarbone can get blocked, especially in smokers and diabetics, he noted. ‘If one artery is more blocked than the other, then there is a difference in blood pressure in the arms,’ O’Neill explained.

‘Doctors should, for adults — especially adult smokers and diabetics — at some point check the blood pressure in both arms,’ he said. ‘If there is a difference it should be looked into further.’

The report appears in the Jan. 30 online edition of The Lancet. ”

Notice I capitalized may. That’s because, in my case, there apparently was no blockage. My cardiologist had a different view of things. He felt there wasn’t a problem unless the difference in readings between your two arms is more than 20 points and that your blood pressure would have to be much higher than my slightly elevated blood pressure before this could be considered a problem.

He made note of my diabetes and congratulated me for taking such good care of myself, especially since I’m a caretaker. I must have looked puzzled because he went on to explain that caretakers sometimes have a sort of martyr complex and are convinced they cannot take the time away from the person they’re caring for to care for themselves. And, yes, he did use the oxygen masks in an airplane analogy to point out how important it is for caretakers to care for themselves first.

Now that I’ve wandered on to the subject of caretakers, seemingly continuing the thread from last week’s blog, here’s a health screening from Path to Wellness that may interest you if you live in Arizona. I urge you to take part yourself and bring anyone you think may be affected or has someone in their lives that may have CKD.

What: The National Kidney Foundation of Arizona will host a FREE health screening, aiming to identify chronic diseases in their early stages in those at highest risk.

When: Saturday, January 26, 2019, 8:30am- 12:00pm (appointments highly recommended**)

Where: Betty Fairfax High School (8225 S. 59th Ave., Laveen, AZ 85339)

Individuals who are 18 years or older and have a family member with diabetes, high blood pressure or chronic kidney disease, OR have high blood pressure or diabetes themselves are urged to attend this important event. Early detection means the possibility of preventing further, life-risking damage to the kidneys.

**Appointments may be scheduled by calling the National Kidney Foundation of Arizona at (602) 840-1644 (English) or (602) 845-7905 / (602)845-7912 (Spanish).

OR

Visit https://azkidney.org/pathtowellness and register online!

This medical screening includes immediate onsite results and medical education and is provided at absolutely no cost. The event is staffed with medical professionals, with the ability to screen 200 attendees.

About Path to Wellness: The Path to Wellness program is the product of a community collaboration between the National Kidney Foundation of Arizona and Cardio Renal Society of America. This January screening is provided in partnership with Adelante Healthcare and the Phoenix Metropolitan Alumnae Chapter, Delta Sigma Theta Sorority, Inc. Sorority, Inc., and generously funded by the BHHS Legacy Foundation. Path to Wellness screenings are unique in that they try to target areas of cities where the high demographics of under-insured or at-risk individuals may have an opportunity to detect chronic health problems early on, in a cost-free environment. The screenings also offer the unique advantage of both on-site results, and post-screening education on chronic disease management.

Until next week,

Keep living your life!

A Creatinine Christmas Present

Tomorrow is Christmas and a Merry Christmas to those of you who celebrate. The day after Christmas Kwanzaa begins, so a Happy Kwanzaa to those of you who celebrate. But back to Christmas right now: today’s blog is a present to a reader who joined me way back when I first started blogging and has since become a close online friend.

You see, her creatinine is rising but she’s barely eating and – since she has multiple physical conditions – can’t exercise. She’s flummoxed and so was I because food and muscle waste are the two usual causes of rising creatinine levels in the blood. I decided to try to help her sort this out now even though she’ll be seeing her nephrologist right after the New Year.

A good place to start is always at the beginning. By this, I wonder if I mean the beginning of my Chronic Kidney Disease awareness advocacy as the author of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and the blog or if I mean the basics about creatinine. Let’s combine them all. The following definition is from the book which became the earliest blogs:

Creatinine clearance: Compares the creatinine level in your urine with that in your blood to provide information about your kidney function”

Hmmm, that didn’t exactly work. Let’s try again. Bingo! It was in SlowItDownCKD 2014,

“Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. {MayoClinic.org}”

Red meat? No, that’s not it. My friend doesn’t eat meat at all, as far as I know. Beaumont Hospital Kidney Centre at http://www.beaumont.ie/kidneycentre-forpatients-aguidetokidneydisease-die offers the following information concerning food and creatinine:

“Protein intake from the diet is important during the progression of chronic kidney disease and also when you commence dialysis. The protein we eat is used for tissue repair and growth. Any unused protein is broken down into waste products, including urea and creatinine. As your kidneys are unable to excrete urea and creatinine properly, they build up in your blood and cause symptoms such as nausea and loss of appetite.

By eating large amounts of protein foods e.g. meat, fish, chicken, eggs, cheese, milk and yoghurt before commencing dialysis [Me here, that means those of us who are pre-dialysis like me], you will affect the buildup of urea and creatinine in your blood. An appropriate daily intake of protein should be advised by your dietician.

However, once dialysis treatment has commenced it is important to make sure that your body is getting enough protein to prevent malnutrition. Some of your stores of protein are lost during the haemodialysis and CAPD sessions. How much protein you need depends on your body size and is specific to each individual.”

And the ‘muscle metabolism’ in our definition? This deals with the way muscles use energy. The waste product of this process is creatinine.

Medical News Today at https://www.medicalnewstoday.com/articles/320113.php had something to say about exercise and creatinine:

“Strenuous exercise, such as weight training or resistance exercise, may cause high creatinine levels.

Muscle activity produces creatinine; the more the muscles work, the more creatinine is in the blood. While regular exercise is essential for good health, overexertion can cause the creatinine levels in the blood to spike.

A 2012 study noted that intense exercise increased creatinine levels in the bloodstream temporarily. It may be best for people to avoid strenuous activity until they have completed any treatment for the cause of the high creatinine levels.

However, people should not avoid exercise altogether, except in some extreme circumstances.

To maintain their exercise regimen, people who like weight training or resistance exercises could switch to yoga and body weight exercises during treatment. People who prefer cardio exercises, such as running or cycling, could consider changing to walking or swimming.”

My friend does not exercise. So what else could it be that is raising her creatinine? I went to New Health Advisor at https://www.newhealthadvisor.com/causes-of-elevated-creatinine.html which was quite comprehensive in answering the question.

“Kidney diseases or disorders can lead to high creatinine levels. Since the kidneys are the filters of wastes from the bloodstream, kidney damage means that there will be a buildup of creatinine beside other waste products in the body. Kidney conditions such as glomerulonephritis, acute tubular necrosis, kidney infection (pyelonephritis) and kidney failure can cause high creatinine levels. Reduced blood flow to the kidneys can also have a similar effect.

Other causes of elevated creatinine levels in blood include shock, dehydration, and congestive heart failure. These conditions lead to a reduction in blood flow to the kidneys, which interferes with their normal functions. High blood pressure, diabetic neuropathy, muscular dystrophy, rhabdomyolysis, eclampsia, and preeclampsia can also cause elevated serum creatinine.

In case a patient with renal dysfunction gets an infection like pneumonia, urinary tract infection, intestinal infection, or a cold, the creatinine level may rise within a short time.

Urine abnormalities such as long-term hematuria and proteinuria can also lead to high creatinine levels.

Taking drugs that have renal toxicity properties can also raise the levels of creatinine in the bloodstream. Such medications include chemotherapy drugs, ACE inhibitors, and NSAIDs like aspirin and ibuprofen among others.”

They also included excessive exercise, too much protein in the diet, fatigue, and inadequate rest.

I noticed each site I looked at mentioned that creatinine increase could be temporary. Perhaps a re-test is in order for my friend.

I know you’re already asking why she was surprised to find this on her lab report. She already has CKD which could be a cause of high creatinine levels. What worried her is that they are rising. Is her CKD getting worse? Or did she neglect to get adequate rest (as one possibility) before this particular blood test?

I can’t answer that since I’m not a doctor, although I hope I’ve been able to alleviate her worry until she gets to go to her nephrologist next week. Here’s hoping this was a welcome Christmas present, my friend.

Until next week,

Keep living your life!

A Different Kind of Fatigue

Busy with the holidays? Chanukah has passed, but we still have Christmas, Kwanzaa, and the New Year coming up. Feeling like you’re just too tired to deal with them? Maybe even fatigued? What’s the difference, you ask. Let’s go to Reuters at https://www.reuters.com/article/us-fatigued-tired-s-idUSCOL75594120070207 for the answer:

“’People who are tired,’ Olson [Dr. Karin Olson, with the faculty of nursing at the University of Alberta] explained, ‘still have a fair bit of energy but are apt to feel forgetful and impatient and experience muscle weakness following work, which is often alleviated by rest.

People who are fatigued, on the other hand, experience difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, and increased sensitivity to light. They also may skip social engagements once viewed as important to them.’”

Got it. When I was describing how tired I was to another caretaker, her suggestion was to have my adrenals checked. Hmmm, what does that have to do with Chronic Kidney Disease I wondered. Let’s find out.

First of all, what and where are the adrenals? As I reported in SlowItDownCKD 2016,

“According to Reference.com, a new site for me at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278:

“Adrenal glands are triangular-shaped, measure approximately 1.5 inches high and 3 inches long and are composed of two parts, according to Johns Hopkins Medicine. The outer part is the adrenal cortex, which creates cortisol, aldosterone and androgen hormones. The second part is the adrenal medulla, which creates noradrenaline and adrenaline.

Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. Aldosterone helps regulate sodium and potassium levels, blood volume and blood pressure. Androgen hormones are steroid hormones that are converted to female or male hormones in other parts of the body.

Noradrenaline helps regulate blood pressure, increasing it during times of stress, notes Endocrineweb. Adrenaline is often associated with the adrenal glands, and it increases the heart rate and blood flow to the muscles and the brain.”

Okay then, is adrenal fatigue exactly what it sounds like? According to Dr. James L. Wilson at http://adrenalfatigue.org/what-is-adrenal-fatigue/:

“Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. Most commonly associated with intense or prolonged stress, it can also arise during or after acute or chronic infections, especially respiratory infections such as influenza, bronchitis or pneumonia. As the name suggests, its paramount symptom is fatigue that is not relieved by sleep but it is not a readily identifiable entity like measles or a growth on the end of your finger.

You may look and act relatively normal with adrenal fatigue and may not have any obvious signs of physical illness, yet you live with a general sense of unwellness, tiredness or ‘gray’ feelings. People experiencing adrenal fatigue often have to use coffee, colas and other stimulants to get going in the morning and to prop themselves up during the day.”

I still wanted to know what the connection to CKD was. LiveStrong at https://www.livestrong.com/article/139350-adrenal-glands-kidneys/ had the following to say about the connection:

“Blood Pressure

The adrenals and kidneys also work together to regulate blood pressure. The kidneys make renin, which is a chemical messenger to the adrenals. The renin put out by the kidneys signals the adrenals to make three hormones: angiotensin I, angiotensin II and aldosterone. These hormones regulate fluid volumes, vascular tension and sodium levels, all of which affect blood pressure.

Prednisone

Many kidney patients take prednisone to minimize the amount of protein spilled into the urine by the kidneys. Prednisone also has a powerful effect on the adrenal glands.

Prednisone acts as a corticosteroid, just like the ones produced by the adrenals. When patients take prednisone, the adrenals cease producing corticosteroids. When patients stop taking prednisone, they gradually taper the dosage down to give the adrenal glands the opportunity to ‘wake up’ and start producing corticosteroids again”.

I don’t take prednisone and my blood pressure is under control via medication. Where does this leave me… or you if you’re in the same situation?

I went to WebMD at https://www.webmd.com/a-to-z-guides/adrenal-fatigue-is-it-real#1 for more information.

“Your body’s immune system responds by slowing down when you’re under stress. Your adrenal glands, which are small organs above your kidneys, respond to stress by releasing hormones like cortisol. They regulate your blood pressure and how your heart works.

According to the theory, if you have long-term stress (like the death of a family member or a serious illness), your adrenal glands can’t continuously produce the extra cortisol you need to feel good. So adrenal fatigue sets in.”

This makes sense to me, although adrenal fatigue is not accepted by the Endocrine Society as a diagnose and there are warnings that accepting it as one may mask another problem (read disease) with the same symptoms. I am a caretaker as well as a CKD patient. I am under constant stress even when I’m sleeping. You’ve heard of sleeping with one eye open? I sleep with one ear open, but I do sleep so I can rule out tiredness.

While writing this blog has helped me understand what adrenal fatigue is and how it might affect me, I’m still going to keep my cardiology appointment to explore why my blood pressure is often ten points higher in one arm than another. That’s also a possible heart problem. Maybe adrenal fatigue is affecting how my heart is working … or maybe it’s a blockage somewhere. Why take a chance?

In the meantime, I intend to partake of as many of those holiday party invitations as I can. I can always come home early if I have to or I can rest before they start. Here’s hoping you do the same whether or not you think you have adrenal fatigue.

Oh, there’s still plenty of time to order any of my books on Amazon.com or B&N.com in time for the remaining holidays. There are links to the right of the blog for the kidney books. Click on these links for the fiction: Portal in Time and Sort of Dark Places.

Until next week,

Keep living your life!

Kidney Transplant: Cure or Treatment? 

I’ve already mentioned that there’s an active network of kidney disease awareness advocates… and that we find each other. I met Steve at a think tank last spring. I wasn’t really sure why I’d been invited, but as soon as he and his wife started talking, I knew why they were.

I hesitated to ask Steve to guest blog since, at the time, I was only writing about Chronic Kidney Disease. Since then, readers have asked me to write about all sorts of topics dealing with the kidneys, not just CKD. So I did. Steve and his thoughts on being a transplant fit right in to this new agenda. When I did ask him to guest blog, I received a return response that was one of the most gracious acceptances… and they’ve all been gracious. I’ll turn the blog over to Steve Winfree now.

The other day I was speaking with some friends and one made mention to me how incredibly lucky I was. I received a new kidney from my wife, Heather, just last year and I was feeling as if I were on top of the world. Given that fact, I had to agree with him, but I inquired further to find out what he meant. He responded that it must be such a relief to be cured and to no longer have to worry about kidney issues, dialysis, and the mess that comes with it.

That really got me thinking about what a kidney transplant actually means outside of the wonderful opportunity for a second chance at a more normal life. It also reminded me that there is a knowledge gap between those close to kidney failure and those who are not.

It is essential that, as a kidney transplant recipient, I clarify the difference between a cure and a treatment. Chronic Kidney Disease is a disease that progresses over time. This is due to the fact that CKD is a disease in which your body attacks your kidneys, or is a genetic disorder (PKD), or is a result of a primary disease such as diabetes and/or high blood pressure. The common factor among the types of kidney disease is that an outside source, not the kidney itself, is the reason for the issues.

This is why receiving a new kidney is a treatment and not a cure. A genetic disorder is still active in your body even when the new kidney is placed. Diabetes and high blood pressure can still be prevalent even with a new kidney, thus causing the implanted kidney to be affected in the same way as the old one. It is due to these reasons that a transplant is a treatment and not a cure. My new kidney has allowed my body to filter out the toxins much more easily, freed me from dialysis, and granted me the ability to get around easier since my arthritis was derived from my kidney disease.

The truth is that while this second opportunity at a much better life is an enormous blessing, the reality is that there is a good chance I will need another transplant one day. The reason is that the cause of my initial kidney failure is still within my body and attacking the new kidney. That is in addition to another main reason that a new kidney is not a final cure: organ rejection.

A new kidney is looked at as a foreign object by your body. Our bodies are designed to keep the body in balance and when something out of the ordinary, such as a virus invading, it attacks to bring balance back. The same is applied to a kidney that is transplanted from another source. Your body sees it as a foreign object and attacks it. That is why we must take immunosuppressant drugs to trick our bodies into not realizing there is a foreign organ inside.

With all of this being said about my new transplant being a treatment and not a cure, I want to mention how my life has changed forever. At the age of 33, I feel better right now than I have since I was a young teenager. My entire adult life has been spent in hospitals and doctors’ offices. I am now free to use my time to travel, enjoy life, and be the foster parent that I have always wanted to be.

A big part of receiving a kidney transplant is the medicine that is involved. The medicine you have to take every day is known as an immunosuppressant, or anti-rejection. While this is a medicine that you must take for the rest of your life, there are steps you can take to ensure that you are able to receive the medicine in an affordable manner. Kidney transplant patients qualify for Medicare. Medicare helps take care of a lot of the costs associated with taking these medications, but not all of it. The best advice I can give you in regards to your medications is to educate yourself on Medicare, MediGap, manufacturer coupons, and be in a close relationship with your transplant team’s social worker. It can be overwhelming at times, but I promise you that there are resources out there to help you!

I am extremely lucky in the fact that my wife, Heather, donated her kidney to me. While this is a treatment, it is the most remarkable and life changing treatment I have ever been blessed to receive! While all kidney disease patients would love to be cured, we understand that will never be the case, but that does not mean our lives cannot be just as remarkable and enjoyable with our treatments.

While we all watched our different renal diets during the weekend we were together, I never once saw Steve or Heather bemoan their new regiment with the transplanted kidney. While they talked about the exorbitant cost of the medications, they were accepting. One other thing I noticed about this delightful couple is that they were grateful every minutes of the time we spent together. I’m hoping Steve’s transplant lasts him as long as is medically feasible.

Until next week,

Keep living your life!

Something New and Entirely Different

I sit here trying to write this week’s blog and being interrupted every five minutes by a long involved commentary about one thing or another. Why do I tolerate it? Because it’s Bear, my Bear, my husband who is interrupting. Why not just ask him not to, you say. Well, it’s involved. Basically, it’s because he has Alzheimer’s, doesn’t know how long winded he’s being, and feels terribly insulted when I ask him not to interrupt so I can write.

Sometimes, we can have a conversation without the interruptions and without the involved commentary. Obviously, not right now, but during one of these conversations, I explained to him that I had been asked to write about his Alzheimer’s but felt I needed to preserve his privacy. This good man blew that up. He said something to the effect that if it’s going to help even one person to know what he experiences, what I experience, with this disease, then I was obliged to write about it. His privacy wasn’t more important than that.

Now you have just an inkling of why I love him… and I do, Alzheimer’s or not. Since this is my kidney disease blog, it would make sense to look for any connections between Alzheimer’s and kidney disease. If they exist, that is.

I was not happy to find the following on The National Kidney Foundation’s page at https://www.kidney.org/news/ekidney/august08/Dementia_august08

“People with albuminuria were about 50% more likely to have dementia than people without albuminuria, Dr. Joshua I. Barzilay, at Emory University School of Medicine in Atlanta, Georgia, and his research team report. The association between the two conditions was still strong after controlling for age, education and risk factors, such as high blood pressure, diabetes, smoking, and cholesterol levels. There was a weaker relationship between albuminuria and mild cognitive impairment.”

By now it’s common knowledge to my readers that diabetes is the foremost cause of Chronic Kidney Disease with high blood pressure (hypertension) being the second.

How about some reminders right about now?

The American Diabetes Association at http://www.diabetes.org/diabetes-basics/common-terms/?loc defines the most common type of diabetes in the following manner:

“diabetes mellitus (MELL-ih-tus)
a condition characterized by hyperglycemia resulting from the body’s inability to use blood glucose for energy. In Type 1 diabetes, the pancreas no longer makes insulin and therefore blood glucose cannot enter the cells to be used for energy. In Type 2 diabetes, either the pancreas does not make enough insulin or the body is unable to use insulin correctly.”

As for high blood pressure, also known as hypertension, The National Library of Medicine PubMed Health was able to help us out:

“It happens when the force of the blood pumping through your arteries is too strong. When your heart beats, it pushes blood through your arteries to the rest of your body. When the blood pushes harder against the walls of your arteries, your blood pressure goes up.”

Keep this in mind for later. Here’s the definition of albumin from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

Albumin: Water soluble protein in the blood.

As mentioned in SlowItDownCKD 2013, “according to the physicians’ journal BMJ: ‘albuminuria [is] leakage of large amounts of the protein albumin into the urine.’”

Many of us with CKD have albuminuria at one time or another. Does that mean that 50% of us are going to develop dementia? No, not at all. According to the National Kidney Foundation, that 50% of us with albuminuria are MORE LIKELY to develop dementia, not GOING TO.

I get it. By now, most of you are probably asking what Alzheimer’s has to do with dementia. I popped right over to the Alzheimer’s Association’s (my new best friend) website at https://www.alz.org/alzheimers-dementia/what-is-alzheimers  for an explanation.

“Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”

I’ll bet you want a definition of dementia now. Let’s go to Healthline.com at https://www.healthline.com/health/dementia for one:

“Dementia is a decline in cognitive function. To be considered dementia, mental impairment must affect at least two brain functions. Dementia may affect:

  • memory
  • thinking
  • language
  • judgment
  • behavior”

It’s not surprising that the two definitions look so much alike. Alzheimer’s is one of the ten kinds of dementia that I know about. Different websites have different numbers for how many different kinds of dementia there are. I used the information from MedicineNet at https://www.medicinenet.com/dementia/article.htm#what_are_alzheimers_vascular_and_frontotemporal_dementia

Did you keep the definition of albumin in mind? The key word in that is protein… and that’s where the connection between Alzheimer’s and CKD lies. The information is from an unusual source for me to use, Science Magazine at https://www.sciencemag.org/news/2018/01/alzheimer-s-protein-may-spread-infection-human-brain-scans-suggest:

 “Tau is one of two proteins—along with β-amyloid—that form unusual clumps in the brains of people with Alzheimer’s disease. Scientists have long debated which is most important to the condition and, thus, the best target for intervention. Tau deposits are found inside neurons, where they are thought to inhibit or kill them, whereas β-amyloid forms plaques outside brain cells.”

I realize this is getting very technical and may concentrate on particular elements of this connection in future blogs, but right now, I’d like to remind you that the National Kidney Fund is hosting a webinar “Eating healthy with diabetes and kidney disease” in recognition of National Diabetes Awareness Month on Wednesday, November 28, 2018 from 1:00 – 2:00 p.m. EST.

Again, diabetes… the number one cause of Chronic Kidney Disease. Read more about CKD, diabetes, and hypertension (as well as many other topics) in the SlowItDownCKD series and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. All eight books are available in print and digital on Amazon.com and B & N.com.

Did you know that the first day of Chanukah is December 3rd? We start celebrating Chanukah the night before the first day and celebrate for eight nights… and there are eight books. What a coincidence! (Just planting a seed here, folks.)

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!

Yet Another One

Chronic Kidney Disease awareness advocates have a tendency to hang out together online. One who has become a good buddy and happens to live in Hawaii (Now you see why we’re online buddies.), and I were going back and forth about how it’s important to be what I call a lifelong learner. To put it another way, someone who investigates that about which they don’t know. The timing was good.

A reader soon started communicating with me about tuberous sclerosis complex (TS). I was polite. I was patient. And I had no clue what this had to do with kidney disease, although the word “tuberous” caught my eye. By the way, Dictionary.com at https://www.dictionary.com defines tuberous as “characterized by the presence of rounded or wartlike prominences or tubers.” So I did what any curious, intelligent lifelong learner would do. I asked… and the response was an eye opener.

What she, the reader, sent me led to my going back to my old friend The National Institutes of Health’s U.S. National Library of Medicine. This definition is from their website at https://ghr.nlm.nih.gov/condition/tuberous-sclerosis-complex,

“Tuberous sclerosis complex is a genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs, in some cases leading to significant health problems.”

So, that’s the connection to kidney disease: tumor growth on the kidney… and, according to this definition, it’s genetic. It wasn’t mentioned there, but I remember thinking that it’s also a rare disease.

I thought I’d hop over to National Organization for Rare Diseases at https://rarediseases.org/rare-diseases/tuberous-sclerosis/ for more information, just in case it really was a rare disease. It’s a good thing I did because as it turned out, this is not only a genetic disease, but one that can also be caused by mutation:

“In many instances, an alteration causing tuberous sclerosis occurs as a new (sporadic or de novo) mutation, which means that the gene alteration has occurred at the time of the formation of the egg or sperm for that child only, and no other family member will be affected. The disorder is not inherited from or ‘carried’ by a healthy parent. However, such alterations can be passed on through dominant inheritance (where a trait is transmitted from either an affected mother or father to their child).”

I needed to know more so I poked around looking for the symptoms. My first stop was the ever reliable Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/tuberous-sclerosis/symptoms-causes/syc-20365969 :

“Although the signs and symptoms are unique for each person with , they can include:

  • Skin abnormalities. Most people with tuberous sclerosis have patches of light-colored skin, or they may develop small, harmless areas of thickened, smooth skin or reddish bumps under or around the nails. Facial growths that begin in childhood and resemble acne also are common.
  • Seizures. Growths in the brain may be associated with seizures, which can be the first symptom of tuberous sclerosis. In small children, a common type of seizure called infantile spasm shows up as repetitive spasms of the head and legs.
  • Cognitive disabilities. Tuberous sclerosis can be associated with developmental delays and sometimes intellectual disability or learning disabilities. Mental health disorders, such as autism spectrum disorder or attention-deficit/hyperactivity disorder (ADHD), also can occur.
  • Behavioral problems. Common behavioral problems may include hyperactivity, self-injury or aggression, or issues with social and emotional adjustment.
  • Kidney problems. Most people with tuberous sclerosis develop noncancerous growths on their kidneys, and they may develop more growths as they age.
  • Heart issues. Growths in the heart, if present, are usually largest at birth and shrink as the child gets older.
  • Lung problems. Growths that develop in the lungs may cause coughing or shortness of breath, especially with physical activity or exercise. These benign lung tumors occur more often in women than in men.
  • Eye abnormalities. Growths can appear as white patches on the light-sensitive tissue at the back of the eye (retina). These noncancerous growths don’t always interfere with vision.”

Nope, not enough yet. Even though growths on the kidneys were mentioned, I wanted to know about diagnosing this rare disease. This time I turned to Healthline (Yes, the same Healthline that twice deemed this blog one of the top six kidney blogs.) at https://www.healthline.com/health/tuberous-sclerosis#diagnosis . This is what I found there:

“TS is diagnosed by genetic testing or a series of tests that includes:

an MRI of the brain

a CT scan of the head

an electrocardiogram

an echocardiogram

a kidney ultrasound

an eye exam

looking at your skin under an Wood’s lamp, which emits ultraviolet light”

But what about a cure or treatment? Is there any? According to MedicineNet at https://www.medicinenet.com/tuberous_sclerosis_complex_tsc/article.htm#how_is_tsc_treated ,

“There is no cure for TSC, although treatment is available for a number of the symptoms. Antiepileptic drugs may be used to control seizures. Vigabatrin is a particularly useful medication in TSC, and has been approved by the U.S. Food and Drug Administration (FDA) for treatment of infantile spasms in TSC, although it has significant side effects. The FDA has approved the drug everolimus (Afinitor®) to treat subependymal giant cell astrocytomas (SEGA brain tumors) and angiomyolipoma kidney tumors. Specific medications may be prescribed for behavior problems. Intervention programs including special schooling and occupational therapy may benefit individuals with special needs and developmental issues. Surgery may be needed in case of complications connected to tubers, SEN or SEGA, as well as in risk of hemorrhage from kidney tumors. Respiratory insufficiency due to LAM can be treated with supplemental oxygen therapy or lung transplantation if severe.”

I find myself flabbergasted that, yet again, there is so much to learn for this particular lifelong learner. Wait, you should also know there is an association for those with the disease. It’s the Tuberous Sclerosis Alliance. The following link is for the page that explains how this disease affects the kidneys: https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/kidneys/. Should you be newly diagnosed with this disease or know someone who has been, that’s where you find easily understood information and support. You can also click on to their home page if you want to know how it affects other parts of the body.

That is plenty to absorb for one day.

Until next week,

Keep living your life!

Dead People

Hmmm, maybe that title should read “Famous People Who Died from Kidney Disease.” Let’s go back a bit to see what I’m talking about. By now you know my youngest married on the 6th of this month. Thank you to everyone who sent their best wishes. She and her husband did a wonderful job of creating the wedding they wanted, just as the new Mr. & Mrs. Nielson are doing a terrific job of creating the life they want together.

Of course, her sister came out from New York to join the festivities. As usual, she stayed with Bear and me. That gave us plenty of time to gab between the pre-wedding potluck at my house and all the preparations for the wedding. At one point, I casually mentioned to her that Jean Harlow died of kidney disease. That fascinated Nima for some reason. As I explained the how and why, she asked me why I hadn’t yet written a blog about famous people who died from kidney disease.

At first, I thought it a bit macabre but then I rethought that. My new thinking ran along the line of, “What a perfect blog for Halloween week.” By the way, that’s my brother’s birthday and there is nothing spooky about him. Oh, our preconceptions.

Back to Jean Harlow. For those of you who don’t know, she was not only an American film actress during the 1930s, but a sex symbol as well.

This is from the official Jean Harlow website at https://www.jeanharlow.com/about/biography/

“While filming Saratoga in 1937, Jean was hospitalized with uremic poisoning and kidney failure, a result of the scarlet fever she had suffered during childhood. In the days before dialysis and kidney transplants, nothing could be done and Jean died on June 7, 1937.”

A couple of reminders:

Uremic poisoning is what we now call uremia. This type of poisoning happens when the kidneys can’t filter your blood.

Kidney failure means your kidneys don’t work anymore. One of their jobs is to filter urea from your blood so that it doesn’t build up resulting in uremia.

As for the scarlet fever, “In general, appropriately diagnosed and treated scarlet fever results in few if any long-term effects. However, if complications develop for whatever reason, problems that include kidney damage, hepatitis, vasculitis, septicemia, congestive heart failure, and even death may occur.“ (Courtesy of MedicineNet at https://www.medicinenet.com/scarlet_fever_scarlatina/article.htm)

Dialysis was invented in 1943 by Dr. Willem Kolff. It wasn’t until the 1950s before it was perfected, but for Acute Kidney Injury (AKI) only. To make matters worse, few machines were available. Dr. Belding Scribner then developed a shunt to make dialysis effective for End Stage Renal Disease patients. In other words, not only those with short term kidney injuries, but also those whose kidneys were shutting down permanently. It wasn’t until 1962 that he opened the first outpatient dialysis unit. Later on, he developed the portable dialysis machines.

Keep those years in mind. Keep in mind also that there was no dialysis or transplantation when these people died of kidney disease.

You may remember the blog I wrote about the Austrian composer Wolfgang Amadeus Mozart. He died of kidney failure back in 1792… way before dialysis or transplantation.

Transplantation? You’re right; I haven’t defined it yet. You cannot live without a functioning kidney unless you are on dialysis OR a new kidney – either from a cadaver or a life donor – is placed in your body. It is not a cure for kidney failure, but a treatment. Transplantees take anti-rejection medications for the rest of their lives.

Have you heard of Sarah Bernhardt? She was a French stage actress who died of kidney disease in 1923. She’d also been a silent screen actress, but reportedly didn’t care for film acting. Notice the year.

Emily Dickinson, the celebrated American poet died of Bright’s disease in 1886. (She was still alive during Portal of Time. I wonder if Jesse read her work?) Oh, you forgot what Bright’s disease is? No problem. New-Medical Net at https://www.news-medical.net/health/Brights-Disease-Kidney-Disease.aspx tells us it is “… a historical term that is not currently in use. It referred to a group of kidney diseases – in modern medicine, the condition is described as acute or chronic nephritis.”

It would make sense to define nephritis now. The suffix “itis” means inflammation of and “neph” refers to the kidneys. So, nephritis is an inflammation of the kidneys and can be due to a number of causes.

Let’s not forget the great Irish playwright George Bernard Shaw. He moved to London at 20 years old and became a critic and political activist as well. You’ve heard of the play ‘My Fair Lady’? It was based on his ‘Pygmalion’. He died of kidney disease just before he might have been saved… in 1950.

I think the one who surprised me the most was Buffalo Bill Cody. He was not just the leader of his wild West show, but also a bison hunter, scout (as in finding the way for wagon trains), gold rush participant, possibly a Pony Express rider, and actor. He died in 1917 of kidney failure.

Other famous people who have died of kidney disease include Art Tatum, Color Porter, Douglas MacArthur, Alex Karras, Manute Bol, Ernest Borgnine, Don DeLuise, Art Buchwald, Norman Mailer, Sandra Dee, Barry White, Erma Bombeck, Marlene Dietrich, and Laurence Olivier.

This blog is not meant to scare the wits out of you. Well, maybe it is in a way. Famous people from all walks of life – athletes, writers, actors, musicians, singers, military members, and others – have died of kidney disease. Many before the invention of dialysis and transplantation. Some of kidney disease in combination of other diseases. And some because they didn’t know they had kidney disease.

My point? If you belong to any of the high risk groups for kidney disease, get yourself tested. We’re talking simple blood and urine tests here. The high risk groups are “diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors.” Thank you to the National Kidney Center at http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/ for this list.

Until next week,

Keep living your life!

How Does That Work Again?

I’ve had so many questions lately about how clinical trials work that when Antidote asked me if I’d consider including their infograph in a blog, I jumped at the chance. There’s even more information about clinical trials at https://www.antidote.me/what-are-clinical-trial-phases.

I’ve written about Antidote before… and I’ve written about clinical trials before. It seems more and more people are becoming interested in the process for a multitude of diseases, not only Chronic Kidney Disease.

As a newly diagnosed diabetes patient, I’ve noticed clinical trials for diabetes. A family member has Alzheimer’s; his neurologist keeps an eye out for clinical trials for him. Whatever your disease is, you can search for clinical trials.

While this is not everyone’s cup of tea, it is a chance to help others who may develop the same diseases in the future. Who knows, maybe the new treatment will be FDA approved during your own lifetime and help you with your own disease.

In case you are one of those people who have always wondered just what the FDA is, their website is https://www.fda.gov. That’s right: it’s a government site which is part of the U.S. Health and Human Services. What’s that? You’d like a more precise definition?

No problem. This is from the United States of American Government website at https://www.usa.gov/federal-agencies/food-and-drug-administration and offers basic information about the FDA.

Food and Drug Administration

The Food and Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA also provides accurate, science-based health information to the public.

                                                                                                                                                      Agency Details

Acronym: FDA

Website: Food and Drug Administration (FDA)

Contact: Contact the Food and Drug Administration

 Report a Problem with a Product

Main Address: 10903 New Hampshire Ave.
Silver Spring, MD 20993

Toll Free: 1-888-INFO-FDA (1-888-463-6332)

Forms: Food and Drug Administration Forms

Government branch: Executive Department Sub-Office/Agency/Bureau

By the way, they are also responsible for both recalls and safety alerts for the treatments they’ve approved.

In the infograph above, you’ll notice, “Sometimes, only healthy volunteers participate.” in Phase 1. Should you decide to apply for a clinical trial, you need to keep this in mind to save yourself a bit of heartache. I firmly believe in paying back for the wonderful things in my life and have applied for several clinical trials for other diseases in an effort to do so. I must have missed the small print because I was rejected for having CKD.

I wanted to help eradicate or ameliorate whatever the disease was. Sometimes it was a disease that was ravaging a loved one. It was just a little bit of a heartbreak not to be able to do so.

As for Phase 2, I went to the blog’s site at gailraegarwood.wordpress.com to use the antidote widget at the bottom of the right side of the page. It’s the turquoise one. You can’t miss it. Face Palm! You can also go directly to www.antidote.me to search for clinical trials.

Why Antidote? It’s simply an easier way to find a clinical trial. This is from SlowItDownCKD 2017:

“Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.”

Before I sign off, this came in from the American Association of Kidney Patients:

Please join us on Tuesday, October 9, 2018 at 1 p.m. ET for an educational webinar on Making the Perfect Team: Working with Your Dialysis Technician in partnership with National Association of Nephrology Technicians/Technologists (NANT).  Keep in mind that’s tomorrow. Hit this link if you’d like to register https://register.gotowebinar.com/register/7744206034004582403

Until next week,

Keep living your life!

Rising to the Challenge

Remember Loyal Reader from a few years ago? He and I are still in touch and toss around ideas here and there. He sent me an article about Chronic Kidney Disease patients being at higher risk for Hepatitis C along with the comment, “Hmmm, I wonder why?” I know a challenge when I see one, so let’s find out.

Back to basics: what is Hepatitis C anyway? As I mentioned in SlowItDownCKD 2013, Hepatitis is from the … Greek word root, hepa, which means liver.” Interesting, but not enough information for our purposes.

According to our old friend the MayoClinic at https://www.mayoclinic.org/diseases-conditions/hepatitis-c/symptoms-causes/syc-20354278,

“Hepatitis C is a viral infection that causes liver inflammation, sometimes leading to serious liver damage. The hepatitis C virus (HCV) spreads through contaminated blood.”

The National Kidney Foundation at https://www.kidney.org/sites/default/files/HepC_Infographic.pdf explained why hepatitis C is associated with Chronic Kidney Disease:

“Hepatitis C infection is strongly associated with kidney disease. Hepatitis C is more common in people with kidney disease than the general population. Hepatitis C can be a cause of kidney disease, or make existing kidney disease worse. People receiving a kidney transplant, or donating a kidney, are routinely tested for hepatitis C.

Hemodialysis and Hepatitis C People receiving long-term hemodialysis have a risk of getting hepatitis C through transmission in the dialysis clinic. The risk is small because of strict standard health precautions used in dialysis units today. However, some cases of hepatitis C being spread between patients have been reported.”

By the way, NKF uses infographs which are easy to understand.

In SlowItDownCKD 2017, I explained what KDIGO is. We’re going to need that explanation in just a moment.

“This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.”

Here’s where KDIGO comes in. Way back in 2008, the following was published in the April issue of the official journal of the International Society of Nephrology, Kidney International, which supports the KDIGO:

“‘HCV infection is associated with an increased prevalence of reduced kidney function, albuminuria, and an increased risk of developing end stage renal disease,’ says Dr. Jaber, who is also vice chair for clinical affairs, Department of Medicine at Caritas St. Elizabeth’s Medical Center, ‘HCV infection is also associated with increased mortality among patients undergoing maintenance hemodialysis and among kidney transplant recipients.'”

But, in 2018, KDIGO updated their recommendations: “We recommend screening all patients for hepatitis C virus (HCV) infection at the time of initial evaluation of chronic kidney disease (CKD).”

Hmmm, as Loyal Reader would say, I wonder if this has something to do with the albuminuria Dr. Jaber mentioned in 2008.

Let’s see what we can find out. I found this in SlowItDownCKD 2015:

“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.”

We can figure out that microalbumin is extremely small particles of albumin, but what about proteinuria? I went back, back, back to my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Protein in the urine, not a normal state of being.”

Does anyone else feel like we’re going down the rabbit hole here? Of course it’s not normal! It means we have CKD. Now, if there’s any amount   of protein in our urine… and there may be since we do have Chronic Kidney Disease… it looks like Hepatitis C Virus can raise that amount and lower our GFR. Not good, not good at all.

So what do we do about it? WebMD at https://www.webmd.com/hepatitis/digestive-diseases-hepatitis-c#2 held the least medicalese answer about the drugs that all the sites I viewed saw as the best treatment plan:

“Your treatment will depend on many things including what type of hepatitis C virus you have. In the U.S., the most common type is genotype 1, followed by genotypes 2 and 3. Genotypes 4, 5, and 6 are very rare in the U.S. Your doctor will help you figure out what’s right for you, based on your medical needs and insurance coverage. “

I know. I had the same question. What is a genotype? Hello, Dictionary.com, my old friend, at https://www.dictionary.com/browse/genotype.

“the genetic makeup of an organism or group of organisms with reference to a single trait, set of traits, or an entire complex of traits.”

Well, that makes sense. Just one more thing, though. Is it possible to know we have Hepatitis C before we’re diagnosed with CKD – at which time we should be tested for HCV – or even if we don’t have CKD? That is a loaded question. According to the Centers for Disease Control (CDC), fully 80% of those with acute or short term HCV won’t have any symbols. The other 20% may experience mild symptoms you might experience with any illness: fever, joint pain, being tired and/or nauseous, and the like. However with chronic or long term HCV, you might experience dark urine and/or jaundice of the skin and eyeballs. To complicate matters even more, there are three different kinds of hepatitis. You can read much more about hepatitis at https://www.cdc.gov/hepatitis/hcv/cfaq.htm

There’s one thing that I haven’t yet made clear. Your body rids itself of wastes and excess fluids through either the kidneys or the liver. If you have CKD, your kidneys are already not functioning as well as they should which means you’re not getting rid of either wastes or excess fluids efficiently. Guess what. One of the functions of the liver is to also clean your blood. Having two organs that are not effectively cleansing your blood is not a position you want to be in… ever.

This was a difficult blog to write. There were so many little pieces to link together. But thanks for the challenge, Loyal Reader, I learned a lot.

Switching topics now. Since the weather has been,uh, difficult lately (to say the least), I thought this might be helpful.  Use this link rather than clicking below: https://ecs.page.link/SVpB 

Until next week,

 

Keep living your life!

Dialysis is Now Old Enough to Have Its Own Museum

You know kidney disease advocates sort of bond together, right? I somehow magically ran across Steve Weed, a two time transplant recipient who has his own web development company that specializes in social media planning: Landau Digital Solutions. Actually, he unwittingly led me to the publisher of my first book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before I even knew what he did for a living. But I digress.

While recovering from his recent transplant, Steve posted about visiting a dialysis museum. I found myself mystified that such a thing existed. Wasn’t dialysis only about fifty years old? Who had a museum about such a young invention?

Then I realized that I had never written about the history of dialysis. Maybe it was older. So I did a little digging for us. Will you look at that! The idea of dialysis is much older than I’d thought. This is from Renal Med at http://www.renalmed.co.uk/history-of/haemodialysis:

“Scottish chemist Thomas Graham, known as the ‘father of dialysis’, first described dialysis in 1854. He used osmosis to separate dissolved substances and remove water through semi-permeable membranes, although he did not apply the method to medicine

He worked as a chemist in Glasgow University at around the same time as physician Richard Bright was describing the clinical features and diagnosis of renal failure in Edinburgh. He noticed that crystalloids were able to diffuse through vegetable parchment coated with albumin (which acted as a semi-permeable membrane). He called this ‘dialysis’. Using this method he was able to extract urea from urine. Graham prepared a bell-shaped vessel….”­

This was the seed that later became hemodialysis, which is defined by MedlinePlus (part of the U.S. National Library of Medicine) at https://medlineplus.gov/dialysis.html in the following way:

“Hemodialysis uses a machine. It is sometimes called an artificial kidney. You usually go to a special clinic for treatments several times a week.”

The difference in spelling is due to the variations between British English and American English.

Another step in dialysis becoming dialysis as we know it today is:

“The first human hemodialysis was performed in a uremic patient by (Me: His given name is Georg.) Haas in 1924 at the University of Giessen in Germany…. He used a tubular device made of collodion immersed in dialysate solution in a glass cylinder. Haas was able to calculate that the total non-protein nitrogen removed was 2,772 g. He also showed that the presence of some uremic substances in the dialysate and that water could be removed from the blood. In 1928, he first used the anticoagulant, heparin. In 1937, the first flat hemodialysis membrane made of cellophane was produced, which is produced in similar manner to cellulose, but dissolved in alkali and carbon disulfide…. The resulting solution is then extruded through a slit and washed multiple times to obtain a transparent semipermeable material.”

I found the information on the Advanced Renal Education Program site at https://www.advancedrenaleducation.com/content/history-hemodialysis.

Then, finally, dialysis as we know it. DPC Education Center (Dialysis Patient Citizens) at http://www.dpcedcenter.org/brief-history-dialysis provided this information.

“The history of dialysis dates back to the 1940s. (Me here again: although we know the seeds for the dialysis were planted much earlier.) The first type of dialyzer, then called the artificial kidney, was built in 1943 by Dutch physician Willem Kolff. Kolff had first gotten the idea of developing a machine to clean the blood after watching a patient suffer from kidney failure. When his invention was completed, he attempted to treat over a dozen patients with acute kidney failure over the next two years. Although only one treatment turned out successful, he continued to experiment in improving his design.”

The sources use many words you may not be familiar with. IvyRoses at http://www.ivyroses.com/HumanBody/Urinary/Urinary_System_Kidney_Dialysis.php was able to help us out here.

Parts of a Kidney Dialysis Machine

Dialysis Membrane (sometimes referred to as simply a ‘dialyser’)
Note that there are two types of artificial kidney dialysis in clinical use: Hemodialysis uses a cellulose-membrane tube immersed in fluid, whereas peritoneal dialysis uses the lining of the patient’s abdominal cavity (peritoneum), as a dialysis membrane. This section … only describes the case of hemodialysis.
The “dialyser” part of a kidney dialysis machine consists of a large surface area of cellulose acetate membrane mechanically supported by a plastic structure. Blood is pumped past one side of this membrane while the dialysate fluid passes on the other side. The membrane may be folded-over many times so that the large area of the membrane occupies a practical volume of space.

Dialysate
The dialysate (solution) has the same solute concentrations as those in ordinary plasma. Therefore if the patient’s blood plasma contains excess concentrations of any solutes, these will move into the dialysate, and if the blood plasma lacks the ideal concentration of any solutes, these will move into the patient’s blood. Conversely, the dialysate fluid does not contain any waste products such as urea – so these substances in the patient’s blood move down the concentration gradient into the dialysate.

Anticoagulant
Heparin is the usual anticoagulant that is added to the patient’s blood as it enters the dialysis machine (in order to prevent the blood from clotting as it passes through the machine). Preventing the blood from clotting should, in turn, prevent any blood clots from blocking the filtration surface of the system. However, heparin is not added during the final hour of dialysis in order to enable the patient’s blood clotting activity to return to normal before he or she leaves.”

Finally, I went to the museum site itself for more information. You can find their site at https://www.nwkidney.org/about-us/dialysis-museum/. This important piece of information showed up there.

“It was 1960 when Dr. Belding Scribner and his colleagues at University of Washington developed the Scribner shunt, a device made of Teflon that could link an artery and a vein. This relatively simple device was revolutionary – it made long-term dialysis possible for the first time. Chronic kidney failure was no longer a death sentence.”

So now I know… and so do you. If I ever get out to Seattle again, this museum is on my list of places to visit.

Before I go, The American Kidney Fund asked me to let you know about two webinars this month, both on topics close to my heart… I mean my kidneys. They are Slowing down kidney disease on September 20th and Tips for talking with your doctor on Sept. 25th. Why not mark these on your calendar now while you’re thinking of it?

Until next week,

Keep living your life!

The Dynamic Duo 

Sorry Batman, not yours. I’m writing about Chronic Kidney Disease and diabetes. For a decade, I’ve been told diabetes is the number one cause of CKD. Got it… and (as you know) CKD. Then I learned that CKD can cause diabetes. Ummm, okay, I guess that sort of makes sense. And then, oh my, I developed diabetes. But how? I’d never questioned how that worked before, but I certainly did now.

Let’s go back to the beginning here. First of all, what is diabetes? I included this information in SlowItDownCKD 2013:

“According to MedicalNewsToday at https://www.medicalnewstoday.com/info/diabetes:

‘Diabetes, often referred to by doctors as diabetes mellitus, describes a group of metabolic diseases in which the person has high blood glucose (blood sugar), either because insulin production is inadequate, or because the body’s cells do not respond properly to insulin, or both. Patients with high blood sugar will typically experience polyuria (frequent urination), they will become increasingly thirsty (polydipsia) and hungry (polyphagia).’”

Guilty on all three counts as far as symptoms. It gets worse. I uncovered this fact in SlowItDownCKD 2014:

“According to Diabetes.co.uk at https://www.diabetes.co.uk/how-does-diabetes-affect-the-body.html,

‘The kidneys are another organ that is at particular risk of damage as a result of diabetes and the risk is again increased by poorly controlled diabetes, high blood pressure and cholesterol.’”

This is getting more and more complicated. But again, how is diabetes damaging my kidneys?

It seemed to me that I had just posted a fact about this on SlowItDownCKD’s Facebook page, so I checked. Yep, I did on September 7th.

“Did you know that high glucose levels can make your red blood cells stiffen? This hinders your blood circulation.”

And this affects the kidneys how? Let’s think about this a minute. Way back when I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I included this information:

“A renal artery carries the blood, waste and water to the kidneys while a renal vein carries the filtered and sieved waste from the kidneys.”

The American Society of Hematology at http://www.hematology.org/Patients/Basics/ tells us there are four parts of the blood:

  1. Red blood cells
  2. White blood cells
  3. Plasma
  4. Platelets

Hmmm, so red blood cells compose one quarter of your blood and high glucose can make them stiffen. To me, that means a quarter of your blood will be working against you.  Not what we need… especially when we’re already dealing with Chronic Kidney Disease.

Back to my original question (again): How do high glucose levels affect the kidneys?

Thank you to the National Kidney Foundation at https://www.kidney.org/atoz/content/Diabetes-and-Kidney-Disease-Stages1-4 for exactly the answer I was looking for:

  • Blood vessels inside your kidneys. The filtering units of the kidney are filled with tiny blood vessels. Over time, high sugar levels in the blood can cause these vessels to become narrow and clogged. Without enough blood, the kidneys become damaged and albumin (a type of protein) passes through these filters and ends up in the urine where it should not be.
  • Nerves in your body. Diabetes can also cause damage to the nerves in your body. Nerves carry messages between your brain and all other parts of your body, including your bladder. They let your brain know when your bladder is full. But if the nerves of the bladder are damaged, you may not be able to feel when your bladder is full. The pressure from a full bladder can damage your kidneys.
  • Urinary tract. If urine stays in your bladder for a long time, you may get a urinary tract infection. This is because of bacteria. Bacteria are tiny organisms like germs that can cause disease. They grow rapidly in urine with a high sugar level. Most often these infections affect the bladder, but they can sometimes spread to the kidneys.

I would say I’m heart… uh, kidney…broken about this development, but the truth is I’m not. I don’t like it; I don’t want it, but I can do something about it. I’d already cut out complex carbs and sugar laden foods in an abortive attempt to lose weight for my health. Well, maybe my daughter’s wedding on October 6th had something to do with that decision, too.

The point is, I’ve started. I’m aware of the carbohydrates in food and I’m learning how to control my intake of them… just as I’m aware that I have to break in the shoes for the wedding. Something new has to be gotten used to. I’ve had a head start.

Why the emphasis on carbs, you ask. I turned to my old favorite The National Institute of Diabetes, Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diabetes/overview/diet-eating-physical-activity/carbohydrate-counting  for help:

“When you eat foods containing carbohydrates, your digestive system breaks down the sugars and starches into glucose. Glucose is one of the simplest forms of sugar. Glucose then enters your bloodstream from your digestive tract and raises your blood glucose levels. The hormone insulin, which comes from the pancreas or from insulin shots, helps cells throughout your body absorb glucose and use it for energy. Once glucose moves out of the blood into cells, your blood glucose levels go back down.”

If you’ve got diabetes, your body either is not producing enough insulin or not interacting well with the insulin it is producing. Measuring my blood sugar levels when I awaken in the morning has shown me that when I’m sleeping – when I cannot help my blood sugar levels come down by eating protein or exercising, even in my dreams – is when I have the highest blood sugar. During the day I can keep it under control.

And that’s where my medication comes in. The usual – Metformin – can cause nausea, which I deal with more often than not, so that was out. However, a new medication on the market just might do the trick. It’s only been a few days, but I do notice my blood sugar upon waking is getting lower each day. This medication is not a panacea. I still have to be careful with my food, exercise daily, and sometimes counteract a high carb food with a protein. I’m not there yet, but I’m learning.

Until next week,

Keep living your life!

Not That Kind of Trial

I enjoy reading murder mysteries and thrillers, especially Victorian era ones like the work of Anne Perry.  Sometimes they include –  or even start with – the trial and work their way backwards to the crime. The trial. That got me to thinking about a different kind of trial: clinical trials. How did they begin? What are they? WHY are they?

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/:

“Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.”

That seemed to answer my last question, too, since their purpose is safely test new drugs or therapies.

Are these something recent? Something developed since the Federal Drug Administration (FDA) was instituted? No, they are far, far older. This is from Dr. Arun Bhatt’s Evolution of Clinical Research: A History Before and Beyond James Lind, which you can find at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/. I found it fascinating.

“The world’s first clinical trial is recorded in the ‘Book of Daniel’ in The Bible…. This experiment resembling a clinical trial was not conducted by a medical, but by King Nebuchadnezzar a resourceful military leader…. During his rule in Babylon, Nebuchadnezzar ordered his people to eat only meat and drink only wine, a diet he believed would keep them in sound physical condition…. But several young men of royal blood, who preferred to eat vegetables, objected. The king allowed these rebels to follow a diet of legumes and water — but only for 10 days. When Nebuchadnezzar’s experiment ended, the vegetarians appeared better nourished than the meat-eaters, so the king permitted the legume lovers to continue their diet…. This probably was the one of the first times in evolution of human species that an open uncontrolled human experiment guided a decision about public health.”

Well, then, who is this James Lind mentioned in the title of Dr. Bhatt’s paper? I turned to England’s The Museum: Brought to Life at http://broughttolife.sciencemuseum.org.uk/broughttolife/people/jameslind for the answer:

“The Scottish surgeon James Lind was born in Edinburgh and served an apprenticeship at the Edinburgh College of Surgeons. He then worked as a ship’s surgeon until he opened his own practice in Edinburgh in 1748. Lind discovered the use of citrus fruit as a cure for scurvy when he conducted an early clinical trial. While working as a naval surgeon, Lind encountered cases of scurvy, a disease which often struck sailors on long voyages. The cause, a lack of essential vitamins, was unknown at the time. Earlier doctors had suggested that fresh fruit could be used to treat scurvy, but Lind was the first to test the effects of different diets systematically on a group of patients in a clinical trial. In 1754 he began to feed 12 scurvy patients different foods and found that patients eating citrus fruits such as lemons and oranges recovered much faster than those who were given other kinds of food.”

And now? Why are clinical trials important to us as kidney patients? In this year’s May 21st blog (Use the topic dropdown to the right of the blog itself; it’s easier than scrolling through all the blogs.), I wrote about the benefits of All of Us Research Project. The following is from that blog.

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.”

KidneyX is also involved. On June 24th (Use the topic dropdown again.), I included their principles in the blog.

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”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

‘We test and validate solutions to solve challenging problems in the delivery of health and human services.’”

I know, I know. Now you want to know where you can join clinical trials. How about Antidote? You can go to their website at https://antidote.me/match/search/questions/1?utm_campaign=unisearch&utm_source=slowitdownckd_com&utm_medium=ctsearch&utm_content=no_js or use the widget to the bottom right of the blog. If you’d like a bit more information, I wrote about them on Oct. 7th, 2017 (Use the month dropdown if you’d like to read that blog.)

I could go on and on, but I think you get the idea… and I’ve run out of space.

Until next week,

Keep living your life!

The Third Kidney

Here I am back from the semiannual vacation with my husband, brother, and sister-in-law. It was sad to realize this was our last cruise, but some of our bodies just can’t handle that anymore. It looks like mine may be one of them since I’m in bed feeling not so great. How was I ever going to be able to write a blog for Monday, I wondered.

And then I remembered that I’d met someone with an idea so old that it’s new again and he’d promised a guest blog for this week.  And there it was, right in my mailbox. I’d met Raymond Keller, Jr. DO at the American Association of Kidney Patients I attended recently. He had an intriguing idea, one I thought should be shared with you.

Take it away, Raymond…

First and foremost, please do not consider any of the following as medical advice. Consult your doctor before making any changes to your medical treatment plan.

I’m not the first person to suggest the skin as a “Third Kidney,” but like many others I did independently conceive the idea. For the origin story you can read a recent interview done by the American Association of Kidney Patients. The premise of the Third Kidney is that skin, through the sweat glands, can excrete water, potassium, and urea in amounts that would be clinically useful to patients with chronic kidney disease especially those on dialysis. Before we get into the Third Kidney, let’s take a brief look into the history of dialysis itself.

Willem Johan Kolff is credited with being the inventor of dialysis. He pieced together things that could be found in a contemporary house to create the first dialyzer. The original dialysis membrane was a sausage casing. Crude, but effective. Belding Hibbard Scribner would come to create the “Scribner shunt” which allowed repeated use of the same vascular access. Once long term vascular access was obtained, long term hemodialysis became a reality.

Now let’s get down to the details about how sweating can help dialysis patients. While there are many potential compounds that can build in the body with renal failure, urea, water, and potassium are of particular importance. Let’s take a moment to explore the consequences of each and how sweat therapy can help.

Water is essential to life. So essential, we search for evidence of it on other planets to decide whether life could exist. To most dialysis patients water is a constant enemy. It is the reason they have to spend more than two hours on dialysis per day – to reach their dry weight. The evidence for keeping fluid off is part of the reason why people that do dialysis more than 3 days a week have better outcomes.

As anyone who lives between the Arctic and Antarctic Circle has likely experienced, sweating removes water from your body. Sweating is so interrelated with being human that almost every culture in human history has a tradition of inducing it. The Finns are perhaps the most well-known with their saunas. The Russians have banas, the Turks have hammams, and the Native Americans have sweat lodges. While everyone is different, it is not unreasonable to expect that a 45 minute sauna session could remove between 500-1000mL of fluid from the body. Higher losses are possible with training. To put that into context, a 4 hour dialysis session typically removes 2000mL and removing more than 400mL per hour can cause symptoms of hypotension. Sweating out fluid is a natural process, which is why it can reduce the ultrafiltration required.

In the table 1 below (adapted from https://www.homedialysis.org/life-at-home/articles/fluid-and-solute-removal-part-two) it is very obvious how likely it is for people to develop symptoms from removing fluid from the blood stream rather than the skin. This is especially important when we consider that the skin is where most excess fluid is stored, which is why dialysis patients get puffy.

Now on to potassium. Even though it is a vital nutrient, it has a dark side. Potassium chloride is one of the typically used compounds in lethal injections because it causes the heart to stop beating. As it builds up in the blood of a patient with renal failure it can have the same effect. Similar to fluid overload, keeping potassium levels at an appropriate level are a major reason daily dialysis patients do better than thrice weekly patients. Fortunately, potassium is excreted in sweat at 2-3 times the level it is found in the blood stream. During a regular sauna session the clinically relevant amount of potassium, in upwards of 4.6 grams, can be removed from the body.

And urea? Urea is a controversial molecule is the dialysis community, yet a relatively simple molecule that our bodies use to detoxify ammonia and remove nitrogenous waste from our bodies. We used to think that it freely diffused across cell membranes, like water. But seminal work by my mentor Jeff Sands, MD showed that there are molecular transporters for urea. In the dialysis community, urea rebound is proof that urea is not freely diffusible.

There has been much debate about the toxicity of urea. Regardless of whether urea is toxic, and at what levels it is, blood urea nitrogen is one way we monitor the adequacy of dialysis. Urea is excreted in sweat at about 2-3 times its presence in serum. Understanding how sweat affects the blood urea nitrogen levels will be important in coordinating the combination of sweat therapies with dialysis.

How does all of this relate to SlowItDownCKD? There is value to researching whether sweat based therapies like sauna can be used to reduce the dependence on dialysis. Given the above facts it is useful to ask the question of whether sweat based therapies can reduce the number of days per week or number of hours per day of dialysis. There is also the potential for sweat based therapies to push off dialysis for patients with CKD. Third Kidney currently has IRB (institutional review board, also known as an independent ethics committee) approval to do safety trials with Harvard Medical School professors. After a safety trial, the next step would be a study in patients that have chronic kidney disease.

When it comes to sweat based therapies for CKD I’ll leave you with a few thoughts:

  1. No rational person would say that sweating vis-a-vis exercise is a bad idea for CKD patients.
  2. If fluid balance was better achieved by sweating hours, or even days of dialysis, might be avoided.
  3. If potassium is lost in sweat it would allow people to liberalize their potassium intake, opening up a culinary panoply.

If you are interested in learning more about how sweat based therapies may be beneficial in patients with chronic kidney disease and the research that Third Kidney is doing, you can visit us at ThirdKidney.net.

Wow! Just wow. This is – as we used to say in college decades ago – mind blowing. It’s so simple, yet so complex. With many thanks for this new/old information, I’ll say good bye for now.

Until next week,

Keep living your life!

Sunny Transplants?

A few years ago, when I wrote only about Chronic Kidney Disease, the representative of a transplant group asked me to write about transplantees and skin cancer. I respectfully declined. As you may have noticed, my topics have become more wide ranging this year, from PKD to the Chronic Disease Coalition and all things in between. This week, I’m going to add skin cancer and transplantees to that list.

For me, that means going back to the basics since I was surprised that this was even an issue. The logical place to start was The Skin Cancer Foundation at https://www.skincancer.org/prevention/are-you-at-risk/transplants:

The most common skin cancers after transplant surgery are squamous cell carcinoma (SCC), basal cell carcinoma (BCC), melanoma and Merkel cell carcinoma (MCC), in that order. (See Table Below) The risk of SCCs, which develop in skin cells called keratinocytes, is about 100 times higher after a transplant compared with the general population’s risk.  These lesions usually begin to appear three to five years after transplantation…. While basal cell carcinoma is the most common skin cancer in the general population, it occurs less frequently than SCC in transplant patients. Even so, the risk of developing a BCC after transplantation is six times higher than in the general population….

Risks of Four Types of Skin Cancer After Transplantation

Risks of Four Types of Skin Cancer After Transplantation

You could have knocked me over with a feather. From this stunning information, I extrapolated that it looks like the anti-rejection drugs are the source of the skin cancer.

Let’s see what these drugs are. The National Kidney Foundation at https://www.kidney.org/atoz/content/immuno explains.

Immunosuppressants are drugs or medicines that lower the body’s ability to reject a transplanted organ. Another term for these drugs is anti-rejection drugs. There are 2 types of immunosuppressants:

  1. Induction drugs: Powerful antirejection medicine used at the time of transplant
  2. Maintenance drugs: Antirejection medications used for the long term.

Think of a real estate mortgage; the down payment is like the induction drug and the monthly payments are like maintenance drugs. If the down payment is good enough you can lower the monthly payments, the same as for immunosuppression.

There are usually 4 classes of maintenance drugs:

  • Calcineurin Inhibitors: Tacrolimus and Cyclosporine
  • Antiproliferative agents: Mycophenolate Mofetil, Mycophenolate Sodium and Azathioprine
  • mTOR inhibitor: Sirolimus
  • Steroids: Prednisone

Okay, got it. But I still don’t understand what that has to do with skin cancer. The Department of Dermatology at Oxford University Hospital of the National Health Service Trust (in the United Kingdom) at https://www.ouh.nhs.uk/patient-guide/leaflets/files/11710Pimmunosuppressants.pdf offers this information:

“These drugs work by reducing your immune (defence) system. However, these treatments also increase your risk of skin cancer….”

Now it makes sense. While saving your life via preventing the rejection of your new life giving organ by suppressing your immune system, other conditions like cancer are sneaking passed that suppressed immune system. So you need to take these drugs to keep your new kidney, but they could shorten your life by letting the cancer cells multiply.

PATIENT CHARACTERISTIC FREQUENCY OF
DERMATOLOGY EXAM
No history of skin cancer or Actinic Keratosis Every 1-2 years
History of Actinic Keratosis Every 6 months
History of 1 non-melanoma skin cancer Every 6 months
History of multiple non-melanoma skin cancer Every 3 to 4 months
History of high risk SCC or melanoma Every 2 to 3 months
History of metastatic SCC Every 1 to 2 months

Hmmm, but maybe not. There must be a way to at least help guard against this… and there is. Actually, there are several including avoiding the sun, using sun block, wearing the newish sun blocking clothing, and simply wearing clothing that blocks the sun. (The chart above comes from the same site as the quote below). As the University of California San Francisco Skin Transplant Network phrases it at http://skincancer.ucsf.edu/transplant-patients:

“Clothing is a simple and effective sun protection tool. It provides a physical block that doesn’t wash or wear off and can shade the skin from both UVA and UVB rays. Long-sleeved shirts and pants, hats with broad brims and sunglasses are all effective forms of sun protective clothing.”

There’s quite a bit of easily understood information about the different kinds of skin cancer that affect transplantees at the above URL. By the way, this request for patient participants also appears on their website:

We need transplant recipients to please help us by participating in our brief survey study about your skin.

Please click here to access our online consent form to learn more about the study.

After electronically signing the consent form, you will be directed to a short questionnaire about your health.
There will be no cost to you; your participation is entirely voluntary and will not influence your care or your relationship with your doctors.

Thanks so much for your help in skin cancer research!
UCSF IRB approved, #16-20894

Not only do you find the information you may be looking for about skin cancer and transplantees on this website, but you also have this opportunity to help with skin cancer research.

Whoops! I neglected to define UVA and UBV rays. Encarta Dictionary apprises us that UVA is “ultraviolet radiation, especially from the sun, with a relatively long wavelength,” while UBV is “ultraviolet radiation, especially from the sun, with a relatively short wavelength.” Not very helpful, is it?

Let’s try this another way. Many thanks to Cancer Research UK at https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/sun-uv-and-cancer/how-the-sun-and-uv-cause-cancer for clearing this up for us:

“There are 2 main types of UV rays that damage our skin. Both types can cause skin cancer: UVB is responsible for the majority of sunburns. UVA penetrates deeper into the skin. It ages the skin, but contributes much less towards sunburn.”

Another way to help yourself avoid skin cancer after having a transplant is to learn how to monitor your skin for cancer and then to do so on a regular basis. If you notice any abnormal spots or growths, get thee to thy dermatologist quickly. Apologies to Mr. Shakespeare for suborning his line.

You’ll probably be taught the ABCDE of Melanoma detection, too. The American Academy of Dermatology at www.aad.org is another good source of skin cancer information.

Here are some things I didn’t know about skin cancer that you may not know either. I picked them up at a local lecture on avoiding skin cancer:

Your lips need sunscreen, too.

The most common spot for men to develop skin cancer is the back; for women, it’s the legs.

Stage 3 and 4 Melanoma can get into your lymph nodes.

Effective sun screens contain both titanium and zinc.

Use SPF 50 on your face.

My transplanted friends always tell me transplant is “a treatment, not a cure.” Now I understand it’s a treatment with some possibly serious side effects.

Until next week,

Keep living your life!

Cindy Tells All

On June 11th of this year, I wrote about Polycystic Kidney Disease after having met Cindy Guentert-Baldo at a kidney event. She has a type of kidney disease that I had no clue about until she started explaining it. What she had to say caught my attention, so I asked her if she would be willing to guest blog. I knew she had a family and is both a lettering artist and YouTube creator. That’s a lot of busy, especially if you’re dealing with a chronic illness. Luckily for us, she was able to work a guest blog into her busy schedule.

*****

In some ways, I live the typical middle class American mom life. I have a middle schooler and a high schooler. I work from home, my husband works a 9-5 in an office. The kids go to school, do their homework, go to activities. I have coffee dates with friends and dinner out with family, we go to the movies, we stay home and do yard work. Same routine, same rhythm as so many other families we know.

This picture doesn’t tell the whole story: I have polycystic kidney disease. I am currently in Stage 4, with my eGFR hovering around 25. My kidneys, at last measurement, were 27 and 25 cm in length.

Part of my daily rhythm is taking 10 different medications to control my blood pressure, manage other symptoms of being in Stage 4 of kidney disease and to help with my pain levels. Another part is having to take breaks when my energy flags or my pain levels get high enough to make sitting at a desk impossible. My kids have learned to read my body language so they know when Mom’s having a bad pain day. They’ve also learned to not hug me around my stomach, as my kidneys are so large that a loving hug could send me to bed for a few days.

I’ve burst a cyst making my bed, tying my shoe, twisting at the waist. I currently have a cyst the size of a healthy kidney underneath my left ribs that is a constant reminder that I am sick.

Aside from the physical problems that come with ADPKD (Let me help Cindy out here with a definition from emedicine at https://emedicine.medscape.com/article/244907-overview: “Autosomal dominant polycystic kidney disease (ADPKD) is a multisystemic and progressive disorder characterized by cyst formation and enlargement in the kidney … and other organs (eg, liver, pancreas, spleen). Up to 50% of patients with ADPKD require renal replacement therapy by 60 years of age.”), there is also the emotional baggage I carry.

This disease is genetic – I have multiple family members in different stages. In some ways, I am grateful to have people to talk to who understand without my having to explain. On a recent vacation my sister (who is in Stage 5) and I lay next to each other and just let out our frustrations and difficulties, knowing we had someone listening who understood. Our grandmother is in her 15th year with her transplant – she has impressed upon us how crucial it is to be informed about the disease in general and our health specifically.

I carry a lot of emotional, painful baggage due to this disease. Our father passed away from a brain stem aneurysm at age 40, brought on due to high blood pressure and PKD. My sister and I were diagnosed shortly afterwards. These days, as I approach 40, I live with a certain amount of terror. What if I die and leave my kids the way my dad left me? I’m aware of how unreasonable of a fear that is – my father died because he was unable to get health insurance and, thus, was unable to care for himself as his kidney disease progressed. I have learned from that.

That doesn’t change the deep fear inside me.

I also live with the guilt that I may have passed this disease to one or both of my children. Was I selfish becoming a parent knowing the kids themselves could wind up with PKD? I was healthy when I had them. I had no idea what I would be feeling like as my kidneys grew and began to fail. Make no mistake; I adore my children, and the world is a better place with them in it. But that doesn’t make the guilt go away.

I worry about having access to healthcare. I worry about dialysis with kids still in school. I worry about something happening to me the way it did to my dad. I worry about something happening to my sister the way it did to our dad. I struggle with my body image as my kidneys grow and I look more and more pregnant. I fight with my expectations of what I think my body should be able to do, and what I am actually able to do. I fight against the idea that I am a sick person.

Despite ALL of this, I love my life. I love my family. I love my friends. I live a mundane, repetitive, fantastic, beautiful life of a mom, a wife, a sister, a friend, an artist, a woman.

I am not PKD. I am a person with PKD…

And I am so much more.

*****

I have to admire Cindy for her honesty here. She would be having these feelings whether or not she shared them with us, but the fact that she did may just make it easier for other PKD patients to speak about their own fears.

By the way, The American Kidney Fund’s next webinar, Advocating for a rare disease, is on Thursday, July 26, 2018 from 2:00 – 3:00 p.m. EDT. The speakers will be Angeles Herrera, Holly Bode, You can register at https://register.gotowebinar.com/register/7986767093922676227.

In other news, the SlowItDownCKD book series now includes SlowItDownCKD 2011, 2012, 2013, 2014, 2015, 2016, and 2017, all available from Amazon.com and B & N.com. I had contemplated changing the title of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to SlowItDownCKD 2010 but rejected the idea. I like that title; don’t you? Of course, expect SlowItDownCKD 2018 early next year. These books were written for those of you who have requested the blogs in print form for those family members and friends who are either not computer savvy or don’t have easy access to a computer. It’s my pleasure to comply with that request. Oh, I still have one desk copy each of the retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2 if you’ve not received a free book from me before and would like one of them. Just respond with a comment so I know you were the first to ask.

Until next week,

Keep living your life!

Help When You Need It

One of the many people I met at the AAKP Conference who opened my eyes to things I’d never even though of before is Samantha Siegner from the Chronic Disease Coalition. We hit it off right away and I felt comfortable exposing my ignorance to her. Once she explained what the coalition does, I wanted all my readers to know about it. Happily for us, Samatha agreed to write a guest blog for us.

*****

Nearly half of all adults in the United States have one or more chronic health conditions, and the number continues to climb. By 2020, it is projected that over 157 million Americans will battle a chronic disease. While some chronic conditions can be prevented, others are inherited, or may develop as a result of numerous factors. Despite the prevalence of chronic disease, few organizations are specifically dedicated to addressing the needs of patients who battle all types of chronic conditions rather than a single disease.

The Chronic Disease Coalition (CDC) is national nonprofit organization that represents people battling a wide range of chronic conditions, including kidney disease, diabetes, arthritis, multiple sclerosis and more. As patients dealing with kidney disease or other chronic conditions know, it can be difficult to work, attend school or even get adequate health insurance coverage. Our organization works to not only raise awareness and educate the public about chronic conditions, but also to advocate for patients who need better access to care. Our mission is focused on exposing and addressing discriminatory practices and policies that are preventing patients from accessing necessary, often lifesaving care.

Discrimination based on a person having a chronic disease comes in various forms, but we most frequently see it occur in the school, workplace and with health insurance plans.

  1. School: For those looking to complete high school or even college, it can be difficult to regularly attend class or have the energy to complete assignments. For kidney patients, dialysis poses difficulty attending class, as you may be required to dialyze for several hours multiple times a week. It is important to educate yourself on the services offered by the school to ensure that you are receiving reasonable accommodation that support your effort to pursue education.

Our organization works with people to ensure that they are being treated fairly in the school system, read more in one patient’s story here.

  1. Workplace: Many people with chronic conditions may frequently visit the doctor’s office for treatment, response to a flare up or check-ups to ensure that their condition is being managed properly – these actions can require additional time off work. While it is not legal for an employer to ask about your medical history, some patients may disclose it. This can lead to a greater understanding and development of a process for how you miss work, but for others, it may lead to losing their job or being demoted.

The CDC helps patients by supporting legislation that protects the privacy of employee’s medical history and ensures that businesses and corporations cannot discriminate based on their health status. Additionally, we ensure that patients are educated on their rights within the workplace.

  1. Insurance: Unfortunately, insurance discrimination is all too common. Insurers institute a variety of practices to increase their bottom line at the expense of the patients, without consideration for the long-term health consequences. Some of the most common practices include, step-therapy or fail-first, lengthy prior authorization approval times, nonmedical switching and bans on charitable premium and copay assistance, which is a common way for insurers to target kidney patients.

Right now, insurers across the nation are targeting chronic disease patients who rely on charitable premium assistance to help afford the cost of their health care. By utilizing a loophole within a 2014 guideline issued by the Centers for Medicare and Medicaid Services, insurers are denying premium and copay payments made by charities, like the American Kidney Fund, on behalf of patients. As a result, patients are forced off their current health plan and left to find other options. This is a commonly used tactic to force patients off of private health plans and onto public plans, because the insurer doesn’t want to cover chronic disease patients that require expensive, regular treatment, like dialysis. While kidney patients are eligible for Medicare before the age of 65, a public plan may not meet their needs or cover services that can help a patient become eligible for a transplant.

The Chronic Disease Coalition is actively working to pass H.R. 3976, the Access to Marketplace Insurance Act to ensure that patients can access charitable premium assistance and choose the health plan that best meets their needs.

So how does the Chronic Disease Coalition work with kidney patients? In addition to advocating on behalf and beside kidney patients to ensure discriminatory policies don’t hinder their ability to access care, we work with patients in their communities to raise awareness and educate the public on kidney disease at an individual level and through our Ambassador Program.

After receiving an initial diagnosis, many people with kidney failure may not know what to expect from treatment, what questions they should ask their medical team and what changes may come to their daily life. Our Ambassador Program was developed on this understanding and is comprised of active advocates who battle chronic diseases and provide guidance, advice and advocate on issues that concern kidney patients. Ambassadors complete advocacy work that is relevant to their specific diseases and communities each month.

If you are interested in learning more about the CDC and how you may be able to become involved, please click here. Change happens when people speak out, share their stories and take action – the CDC is proud to provide a platform for kidney patients and all people with chronic conditions to do so.

*****

Did you click through on all the blue words? I did. I’d had inklings of what each of these meant, but the full explanation made my understanding so much better. All I can say is: Thank you!

SlowItDownCKD 2014 should be out on Amazon.com any day now. B & N takes a few weeks longer. This had formerly been the second half of the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I’d vowed to separate both this book and the equally unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 into two books each… and now I have. Of course, that leaves me with desk copies of each of the Book of Blogs which I no longer need. Want one? Let me know (but only if you haven’t received a free book from SlowItDownCKD before).

Until next week,

Keep living your life!

 

No Longer an Actor, Now I’m a Reviewer (Of Sorts)

Last month I received an email from Screen Media asking if I’d like to preview Chicken Soup for the Soul’s One Last Thing. It stars two actors I know about, “…Wendell Pierce (TV’s The Wire) and Jurnee Smollett-Bell (TV’s Underground) and is primarily set in Brooklyn.” Hmmm, two appealing actors AND it was set in Brooklyn. I still wasn’t sure so I emailed back asking if SlowItDownCKD was the intended recipient for this email. Once assured it was, I agreed. Hey, I’m always up for an adventure.

When I saw the movie, I understood. One story line in the movie deals with a kidney dysplasia patient’s need for a donor. That’s all I’ll say about the movie so I don’t ruin the story for you. In other words, you’ll get no spoiler alerts from me.

In addition to crying at the most poignant parts of the movie, my brain was working overtime. Granted the character suffered from a rare kidney disease, but so rare that I’d never heard of it? You can tell what’s coming, can’t you? If I hadn’t heard of it, have my readers? And that’s what I’ll be writing about today.

Okay now, let’s see what this rare kidney disease is. It made sense to me to go to one of the tried and true websites I usually go to for information. This is what The National Institute of Diabetes, Digestive, and Kidney Diseases, a part of the U.S. Department of Health and Human Services, at https://www.niddk.nih.gov/health-information/kidney-disease/children/kidney-dysplasia had to offer:

“Kidney dysplasia is a condition in which the internal structures of one or both of a fetus’ kidneys do not develop normally while in the womb. During normal development, two thin tubes of muscle called ureters grow into the kidneys and branch out to form a network of tiny structures called tubules. The tubules collect urine as the fetus grows in the womb. In kidney dysplasia, the tubules fail to branch out completely. Urine that would normally flow through the tubules has nowhere to go. Urine collects inside the affected kidney and forms fluid-filled sacs called cysts. The cysts replace normal kidney tissue and prevent the kidney from functioning.

Kidney dysplasia can affect one kidney or both kidneys. Babies with severe kidney dysplasia affecting both kidneys generally do not survive birth. Those who do survive may need the following early in life:

  • blood-filtering treatments called dialysis
  • a kidney transplant

Children with dysplasia in only one kidney have normal kidney function if the other kidney is unaffected. Those with mild dysplasia of both kidneys may not need dialysis or a kidney transplant for several years.

Kidney dysplasia is also called renal dysplasia or multicystic dysplastic kidney.”

They also offered some clarifying diagrams.

So now we know what it is, but what causes it? I went to MedicineNet at https://www.medicinenet.com/kidney_dysplasia/article.htm#what_is_kidney_dysplasia for the answer to this question.

“Kidney dysplasia may be caused by the mother’s exposure to certain drugs or by genetic factors. Pregnant women should talk with their health care providers before taking any medicine during their pregnancy. Drugs that may cause kidney dysplasia include prescription medicines, such as drugs to treat seizures and blood pressure medicines called angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs). A mother’s use of illegal drugs-such as cocaine-can also cause kidney dysplasia in her unborn child.

Kidney dysplasia can also have genetic causes. The disorder appears to be an autosomal dominant trait, which means one parent may pass the trait to a child. When kidney dysplasia is discovered in a child, an ultrasound examination may reveal the condition in one of the parents.

Several genetic syndromes that affect other body systems may include kidney dysplasia as one part of the syndrome. A syndrome is a group of symptoms or conditions that may seem unrelated but are thought to have the same cause-usually a genetic cause. A baby with kidney dysplasia might also have problems of the digestive tract, nervous system, heart and blood vessels, muscles and skeleton, or other parts of the urinary tract.

A baby with kidney dysplasia might have other urinary problems that affect the normal kidney. On the left, urine is blocked from draining out of the kidney. On the right, urine flows backward from the bladder into the ureter and kidney, a condition called reflux.

(Me, here: You’ll be able to figure out which was the cause of Jurnee Smollett-Belle’s character once you see the movie.)

Problems of the urinary tract that lead to kidney dysplasia might also affect the normal kidney. For example, one urinary birth defect causes blockage at the point where urine normally drains from the kidney into the ureter. Another birth defect causes urine to flow from the bladder back up the ureter, sometimes all the way to the kidney. This condition is called reflux. Over time, if these problems are not corrected, they can damage the one working kidney and lead to total kidney failure.”

I’m thankful this is a rare disease, but wondered just how rare it was. Back to NIKKD at the same URL as before:

“Scientists estimate that kidney dysplasia affects about one in 4,000 babies…. This estimate may be low because some people with kidney dysplasia are never diagnosed with the condition.”

I’m not a numbers person, but that seems like a lot of babies.

Now, the biggie. What can be done before the need for dialysis or transplant rears its head? I went directly to Urology Care Foundation at http://www.urologyhealth.org/urologic-conditions/kidney-(renal)-dysplasia-and-cystic-disease/printable-version since the kidneys are part of your urologic system.

  • “Treatment may only include symptom management.
  • Monitoring should include blood pressure checks, kidney function tests, and urine testing for protein.
  • Periodic ultrasound can be used to make sure the other kidney continues to grow normally and no other problems develop.
  • Antibiotics may be needed for urinary tract infections.
  • The kidney should be removed only if it causes pain or high blood pressure, or ultrasound is abnormal.”

The AAKP Conference I wrote about last week opened my eyes to how much I don’t know about other kidney diseases and those that might affect CKD. The result is that I’ve asked quite a few people and organizations to guest blog about those areas in which they are experts. Expect to see these guest blogs throughout the summer.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“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”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

Until next week,

Keep living your life!

PKD: That’s News to Me

For the last eight years, I’ve pretty much stuck to writing about Chronic Kidney Disease with an exception here or there. When I was at a pharmaceutical think tank to help the company understand how they could be more helpful to kidney patients, I met a woman with polycystic kidney disease (PKD).

I’d heard of it and knew it had to do with multiple cysts on the kidneys, but that’s all I knew. That got me to thinking. Why didn’t I know more and what more should I know about it? So I did what I do best: decided to write about it.

Right now, the former English teacher in me is begging to come out. Indulge me, please. Poly is a prefix meaning many. Cyst means an abnormal sac in the body which contains air, fluid, or a semi-solid substance. Thank you What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of cyst. Ic is simply a suffix meaning of or about. Aren’t you glad I studied English at Hunter College of the City University of New York all those years ago?

Seriously now, I turned to PKD Info at https://www.pkdinfo.com/ only to discover there are two different kinds of polycystic kidney disease. Let’s start with a simple definition of the term PKD.

“PKD describes a group of genetic diseases that cause cysts to form and grow in the kidney. Genetic diseases are the result of changes, or mutations, in a person’s DNA, and can be passed from parent to child. In PKD, cysts are filled with fluid. Over time, they expand, making the kidneys grow larger. This makes it hard for the kidneys to function normally and can lead to kidney failure.”

As for the two different kinds, the PKD Foundation at https://pkdcure.org/what-is-pkd/ tells us:

“There are two types of PKD: autosomal dominant (ADPKD) and autosomal recessive (ARPKD). ADPKD is the more common type and affects more than 600,000 Americans and 12.4 million people worldwide. ARPKD is a rare form of the disease that occurs in 1 in 20,000 children worldwide.

A typical kidney is the size of a human fist and weighs about a third of a pound. PKD kidneys can be much larger, some growing as large as a football, and weighing up to 30 pounds each. The number of cysts can range from just a few to many. The size of the cysts can range from a pinhead to as large as a grapefruit. Although the primary sign of PKD is cysts in the kidneys, there are other symptoms that can occur in various areas of the body.”

I needed more information, especially about how the two types of PKD differ so I turned to my old standby The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/autosomal-dominant-pkd  and found the following information:

“’Autosomal dominant’ means you can get the PKD gene mutation, or defect, from only one parent. Researchers have found two different gene mutations that cause ADPKD. Most people with ADPKD have defects in the PKD1 gene, and 1 out of 6 or 1 out of 7 people with ADPKD have a defective PKD2 gene….

Health care providers can diagnose people with PKD1 sooner because their symptoms appear sooner. People with PKD1 also usually progress more quickly to kidney failure than people with PKD2. How quickly ADPKD progresses also differs from person to person.”

Symptoms? What symptoms? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820 answered that question:

“Polycystic kidney disease symptoms may include:

  • High blood pressure
  • Back or side pain
  • Headache
  • Increase in the size of your abdomen
  • Blood in your urine
  • Frequent urination
  • Kidney stones
  • Kidney failure
  • Urinary tract or kidney infections”

Whoa! I’ve got at least four of those symptoms, so how do I know I don’t have PKD? Remember those wonderful people who elected SlowItDownCKD as one of the six best kidney blogs two years in a row? You’re right, it’s Healthline at https://www.healthline.com/health/polycystic-kidney-disease#diagnosis. As they explained:

“Because ADPKD and ARPKD are inherited, your doctor will review your family history. They may initially order a complete blood count to look for anemia or signs of infection and a urinalysis to look for blood, bacteria, or protein in your urine.

To diagnose all three types of PKD, your doctor may use imaging tests to look for cysts of the kidney, liver, and other organs. Imaging tests used to diagnose PKD include:

  • Abdominal ultrasound. This noninvasive test uses sound waves to look at your kidneys for cysts.
  • Abdominal CT scan. This test can detect smaller cysts in the kidneys.
  • Abdominal MRI scan. This MRI uses strong magnets to image your body to visualize kidney structure and look for cysts.
  • Intravenous pyelogram. This test uses a dye to make your blood vessels show up more clearly on an X-ray.

Did I just read THREE types of PKD? I did. Maybe I’d better find out what the third one is. To do so, I turned to News Medical at https://www.news-medical.net/health/Polycystic-Kidney-Disease-vs-Acquired-Cystic-Kidney-Disease.aspx.

“The cause of ACKD is not fully known, and contrary to PKD, it tends to develop after a patient has had chronic kidney disease for some time – most commonly when they are undergoing renal dialysis to clean the blood (for example, in end stage renal disease). The cysts are created by the build-up of waste products and the deteriorating filtration in the kidneys.”

ACKD is Acquired Cystic Kidney Disease. It seems I have nothing to worry about at this point in my CKD, but I’m wondering how many of you know if there is PKD in your family history. Maybe it’s time to find out. Notice none of the tests are invasive. You know, of course, that we’ve just scratched the surface of PKD information today, right?

I did have cysts show up in both of my kidneys and my liver, but they were very small despite some growth being noticed and there were very few of them. I feel like I’ve dodged a bullet.

How are you beating the heat this summer? I’m hiding in my air conditioned office separating The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two less unwieldy books each with larger print and an index. I’ll let you know when SlowItDownCKD 2013 and SlowItDownCKD 2014 are available. Surely you’ve noticed that The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is no longer for sale. That’s because it has now been separated into SlowItDownCKD 2011 and SlowItDownCKD 2012.

Until next week,

Keep living your life!