Cellulitis, CKD, and Diabetes

My uncle-in-law had it. My children’s father had it. My husband had it. Now the question is what is cellulitis? 

WebMd at https://www.webmd.com/skin-problems-and-treatments/guide/cellulitis#1 answers: 

“Cellulitis is a common infection of the skin and the soft tissues underneath. It happens when bacteria enter a break in the skin and spread. The result is infection, which may cause swelling, redness, pain, or warmth.” 

Alright, but what does that have to do with Chronic Kidney Disease. By the way, only one of the men mentioned in the first paragraph has CKD.  

According to the NHS (National Health Service) in the United Kingdom at https://bit.ly/2IJJrbT: 

“You’re more at risk of cellulitis if you: 

  • have poor circulation in your arms, legs, hands or feet – for example, because you’re overweight 
  • find it difficult to move around 
  • have a weakened immune system because of chemotherapy treatment or diabetes [Gail here: I bolded that.] 
  • have bedsores (pressure ulcers) 
  • have lymphoedema, which causes fluid build-up under the skin 
  • inject drugs 
  • have a wound from surgery 
  • have had cellulitis before” 

Two of the men above were overweight, but one of these did not have CKD. The overweight man who had CKD also had diabetes. One had a wound from surgery which was the cause of his cellulitis. Another had had cellulitis before. (Does this sound like one of those crazy math word questions?) 

CKD is not a cause? Whoa! Whoa! Whoa! Wait just a minute here. Let’s remember that CKD gives you the lovely present of a compromised immune system. A compromised immune system means it doesn’t do such a great job of preventing illnesses and infections. 

Also remember that diabetes is the leading cause of CKD and diabetes can also weaken your immune system. I needed more information about diabetes doing that and I got it from The University of Michigan’s Michigan Medicine at https://www.uofmhealth.org/health-library/uq1148abc:    

“High blood sugar from diabetes can affect the body’s immune system, impairing the ability of white blood cells to come to the site of an infection, stay in the infected area, and kill microorganisms. Because of the buildup of plaque in blood vessels associated with diabetes, areas of infection may receive a poor blood supply, further lowering the body’s ability to fight infections and heal wounds.” 

Remember that cellulitis is an infection. Reading the above, I became aware that I didn’t know anything about plague in the blood vessels and diabetes, so I went right to what I consider the source for vascular information, Vascular.org. This time at https://bit.ly/31dZ0yI:  

“Peripheral artery (or arterial) disease, also known as PAD, occurs when plaque builds up in the arteries and reduces blood flow to the feet and legs. Fairly common among elderly Americans, PAD is even more likely among those with diabetes, which increases plaque buildup.” 

All three of these men were elderly, if you consider in your 70s elderly. Of course, I don’t since I’m in my 70s, but we are talking science here. 

Hmmm, we don’t know yet how cellulitis is treated, do we? Let’s find out. I turned to my old buddy, The MayoClinic at https://www.mayoclinic.org/diseases-conditions/cellulitis/diagnosis-treatment/drc-20370766:  

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery…. 

Try these steps to help ease any pain and swelling: 

Place a cool, damp cloth on the affected area as often as needed for your comfort. 

Ask your doctor to suggest an over-the-counter pain medication to treat pain. [Gail again: no NSAIDS, you have CKD.] 

Elevate the affected part of your body.” 

Now the obvious question is how, as CKD patients and possibly diabetics, do we avoid that infection in the first place? 

“Cellulitis cannot always be prevented, but the risk of developing cellulitis can be minimised by avoiding injury to the skin, maintain [sic] good hygiene and by managing skin conditions like tinea and eczema. 

A common cause of infection to the skin is via the fingernails. Handwashing is very important as well as keeping good care of your nails by trimming and cleaning them. Generally maintaining good hygiene such as daily showering and wearing clean clothes may help reduce the skin’s contact with bacteria. 

If you have broken skin, keep the wound clean by washing daily with soap and water or antiseptic. Cover the wound with a gauze dressing or bandaid every day and watch for signs of infection. 

People who are susceptible to cellulitis, for example people with diabetes or with poor circulation, should take care to protect themselves with appropriate footwear, gloves and long pants when gardening or bushwalking, when it’s easy to get scratched or bitten. Look after your skin by regularly checking your feet for signs of injury, moisturising the skin and trimming fingernails and toenails regularly.” 

Thank you to Australia’s HealthDirect at https://www.healthdirect.gov.au/cellulitis-prevention for these common sense reminders. Actually, we need to keep washing our hands while Covid-19 is at our door anyway, so we’ve already got that part of the prevention covered. I suspect that many of us don’t bother to deal with small wounds, but it looks like we’d better start. 

What if you do develop cellulitis? How will you be treated? My old buddy, The Mayo Clinic at https://mayocl.in/2FDxUtf tells us: 

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery.” 

Until next week, 

Keep living your life! (Safely, please) 

 

Oh, S**T!

Cute, huh? Especially since I’ll be writing about feces or, as it’s commonly called these days, poo. Defecation (or pooing, if you’d rather) is an important topic for those of us with Chronic Kidney Disease. Did you know CKD can lead to constipation? 

Photo by Pixabay on Pexels.com

Well, how do you know if you have constipation? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253 explains: 

  • “Passing fewer than three stools a week 
  • Having lumpy or hard stools 
  • Straining to have bowel movements 
  • Feeling as though there’s a blockage in your rectum that prevents bowel movements 
  • Feeling as though you can’t completely empty the stool from your rectum 
  • Needing help to empty your rectum, such as using your hands to press on your abdomen and using a finger to remove stool from your rectum” 

Sometimes, medication can be the cause of constipation. According to the International Foundation of Gastrointestinal Disorders at https://www.iffgd.org/diet-treatments/medications/medications-that-can-affect-colonic-function.html

“Constipation can be caused by a variety of medications. These medications affect the nerve and muscle activity in the large intestine (colon) and may also bind intestinal liquid. This may result in slowed colonic action (slow and/or difficult passing of stool).” 

Maybe we need to know what happens in your body during constipation? This is what the Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4059-constipation has to say: 

“Constipation happens because your colon absorbs too much water from waste (stool/poop), which dries out the stool making it hard in consistency and difficult to push out of the body. 

To back up a bit, as food normally moves through the digestive tract, nutrients are absorbed. The partially digested food (waste) that remains moves from the small intestine to the large intestine, also called the colon. The colon absorbs water from this waste, which creates a solid matter called stool. If you have constipation, food may move too slowly through the digestive tract. This gives the colon more time – too much time – to absorb water from the waste. The stool becomes dry, hard, and difficult to push out.” 

Photo by August de Richelieu on Pexels.com

We’re Chronic Kidney Disease patients. That means some of the foods recommended to alleviate constipation may not be allowed on our renal diets. For instance, dried raisin, apricots, and prunes are too high in potassium for CKD patients, although they are helpful if you’re experiencing constipation. You need to speak with your renal dietitian before changing your diet. 

I turned to a new site, BMC at https://rrtjournal.biomedcentral.com/articles/10.1186/s41100-019-0246-3 for information about constipation that is particular to CKD patients. BMC has “an evolving portfolio of some 300 peer-reviewed journals, sharing discoveries from research communities in science, technology, engineering and medicine,” as stated on their website.   

“Accumulating evidence has revealed a relationship between constipation and cardiovascular disease and CKD. The pathogenesis of constipation in CKD patients is multifactorial: decreased physical activity, comorbidities affecting bowel movement, such as diabetes mellitus, cerebrovascular disease, and hyperparathyroidism, a restricted dietary intake of plant-based fiber-rich foods, and multiple medications, including phosphate binders and potassium-binding resins, have all been implicated. CKD is associated with alterations in the composition and function of the gut microbiota, so-called gut dysbiosis.” 

Oh goody, a term I don’t know. Remember VeryWell Health? This is their definition of gut dysbiosis at https://www.verywellhealth.com/what-is-intestinal-dysbiosis-1945045#:~:text=Overview,the%20microorganisms%20within%20our%20intestines

“Gut microbiota dysbiosis, also known as intestinal or gastrointestinal dysbiosis, refers to a condition in which there is an imbalance of the microorganisms within our intestines. These microorganisms, collectively known as gut flora, consist predominantly of various strains of bacteria, and to a lesser extent include fungi and protozoa. The gut flora are essential for digestion and immune functioning….  A state of dysbiosis, therefore, will result in digestive and other systemic symptoms.” 

Photo by Anna Shvets on Pexels.com

Aha, so that’s why I take probiotics. I not only have CKD, but Diabetes Type 2, and have had chemotherapy which is known to cause this problem. I always wondered what the probiotics did for me. We’ll find out right now. WebMD at https://www.webmd.com/digestive-disorders/what-are-probiotics was helpful here: 

“Researchers are trying to figure out exactly how probiotics work. Some of the ways they may keep you healthy: 

  • When you lose ‘good’ bacteria in your body, for example after you take antibiotics, probiotics can help replace them. 
  • They can help balance your ‘good’ and ‘bad’ bacteria to keep your body working the way it should.” 

Prebiotics are also recommended. I get it that ‘pre’ is a suffix (group of letters added before a word to change its meaning) indicating ‘before,’ but still, what do they do for us?  Here’s what the Mayo Clinic at https://www.mayoclinic.org/prebiotics-probiotics-and-your-health/art-20390058 has to say about prebiotics, 

“Prebiotics are specialized plant fibers. They act like fertilizers that stimulate the growth of healthy bacteria in the gut. 

Prebiotics are found in many fruits and vegetables, especially those that contain complex carbohydrates, such as fiber and resistant starch. These carbs aren’t digestible by your body, so they pass through the digestive system to become food for the bacteria and other microbes.” 

To sum it all up: 

“Constipation is one of the most common gastrointestinal disorders among patients with chronic kidney disease (CKD) partly because of their sedentary lifestyle, low fiber and fluid intake, concomitant medications (e.g., phosphate binders), and multiple comorbidities (e.g., diabetes). Although constipation is usually perceived as a benign, often self-limited condition, recent evidence has challenged this most common perception of constipation. The chronic symptoms of constipation negatively affect patients’ quality of life and impose a considerable social and economic burden. Furthermore, recent epidemiological studies have revealed that constipation is independently associated with adverse clinical outcomes, such as end-stage renal disease (ESRD), cardiovascular (CV) disease, and mortality, potentially mediated by the alteration of gut microbiota and the increased production of fecal metabolites. Given the importance of the gut in the disposal of uremic toxins and in acid-base and mineral homeostasis with declining kidney function, the presence of constipation in CKD may limit or even preclude these ancillary gastrointestinal roles, potentially contributing to excess morbidity and mortality….” 

Thank you to the National Institutes of Health’s U.S. Library of Medicine’s National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7000799/ for their summary of the problem. Before I end this blog, I ask you to make sure you notice the mention of “the disposal of uremic toxins” above. 

Until next week, 

Keep living your life! 

“klot” + “id” 

No, that’s not the result of misplacing my fingers on the keyboard. According to https://youglish.com/pronounce/clotted/english, this is the correct two syllable pronunciation of the word clotted. My all-time favorite dictionary, the Merriam-Webster, at https://www.merriam-webster.com/dictionary/clotted defines the adjective (word describing a noun) clotted as:

“1: a portion of a substance adhering together in a thick nondescript mass (as of clay or gum)

2 a: a roundish viscous lump formed by coagulation of a portion of liquid or by melting

b: a coagulated mass produced by clotting of blood”

You’re right – it’s the second definition we’ll be dealing with today. Why? A long-time reader was telling me about his blood clot when I suddenly realized I had no idea if there were any connection at all between Chronic Kidney Disease and blood clots.

As it turns out, there is.  The following is from the National Kidney Foundation at https://www.kidney.org/sites/default/files/Blood_Clots_And_CKD_2018.pdf:

“CKD may put you at higher risk for VTE. The reasons for this are not well understood. The connection may depend on what caused your CKD and how much kidney damage you have. No matter the reason, CKD may make it easier for your body to form blood clots. The risk for VTE is seen more often in people with nephrotic syndrome (a kidney problem that causes swelling, usually of the ankles, a high level of protein in the urine, and a low level of a protein called albumin in the blood).”

I have a question already. What is VTE? I found World Thrombosis Day’s explanation at www.worldthrombosisday.org › issue › vte the most helpful.

“Venous thromboembolism (VTE) is a condition in which a blood clot forms most often in the deep veins of the leg, groin or arm (known as deep vein thrombosis, DVT) and travels in the circulation, lodging in the lungs (known as pulmonary embolism, PE).”

How could I have CKD for over a dozen years and not know this? Many thanks to my reader and online friend for bringing it up. 

Well, it’s back to the beginning for us. How is VTE diagnosed? The Centers for Disease Control and Prevention (CDC) at www.cdc.gov › ncbddd › dvt › diagnosis-treatment was helpful here.

“Duplex ultrasonography is an imaging test that uses sound waves to look at the flow of blood in the veins. It can detect blockages or blood clots in the deep veins. It is the standard imaging test to diagnose DVT. A D-dimer blood test measures a substance in the blood that is released when a clot breaks up.”

Let’s take a closer look at the D-dimer blood test. That’s another new one for me. My old standby, MedlinePlus (This time at https://medlineplus.gov/lab-tests/d-dimer-test/.) offered the following which more than satisfactorily answered my question.

“A D-dimer test looks for D-dimer in blood. D-dimer is a protein fragment (small piece) that’s made when a blood clot dissolves in your body.

Blood clotting is an important process that prevents you from losing too much blood when you are injured. Normally, your body will dissolve the clot once your injury has healed. With a blood clotting disorder, clots can form when you don’t have an obvious injury or don’t dissolve when they should. These conditions can be very serious and even life-threatening. A D-dimer test can show if you have one of these conditions.”

By the way, MedlinePlus is part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health.

This brings me to another question. How would you or your doctor even know you may need this test?

“According to the Centers for Disease Control and Prevention (CDC), about half of people with DVT don’t have symptoms. Any symptoms that do occur will be in the affected leg or the area where the clot is found. Symptoms can include:

pain

redness of the skin

warmth of the skin

swelling of the area

If the clot moves into the lungs and you develop PE, you may have symptoms such as:

chest pain, which may get worse when you breathe deeply or cough

coughing

coughing up blood

dizziness or even fainting

rapid shallow breathing, or tachypnea

rapid heartbeat

irregular heartbeat

shortness of breath”

Thank you to Healthline at https://www.healthline.com/health/dvt-vs-pulmonary-embolism for the above information.

Now we know what VTE is, what symptoms you may experience, and the test to take to confirm that you do, indeed, have VTE. You know what comes next. How do we treat VTE once it’s confirmed?

These are some, but not all, of the treatments that may be recommended. I discovered them on WebMD’s site at https://www.webmd.com/dvt/what-is-venous-thromboembolism.

“Blood thinners. These drugs don’t break up the clot, but they can stop it from getting bigger so your body has time to break it down on its own. They include heparin, low-molecular-weight heparin, apixaban (Eliquis), edoxaban (Savaysa), rivaroxaban (Xarelto), and warfarin (Coumadin).

Clot-busting drugs. These medicines are injections that can break up your clot. They include drugs like tPA (tissue plasminogen activator).

Surgery. In some cases, your doctor may need to put a special filter into a vein, which can stop any future clots from getting to your lungs. Sometimes, people need surgery to remove a clot.

Even after you recover from a VTE and you’re out of the hospital, you’ll probably still need treatment with blood thinners for at least 3 months. That’s because your chances of having another VTE will be higher for a while.”

I’m still wondering how to avoid VTE. This is what The National Blood Clot Alliance at https://www.stoptheclot.org/learn_more/prevention_of_thrombosis/ suggested:

“Ask your doctor about need for ‘blood thinners’ or compression stockings to prevent clots, whenever you go to the hospital

Lose weight, if you are overweight

Stay active

Exercise regularly; walking is fine

Avoid long periods of staying still

Get up and move around at least every hour whenever you travel on a plane, train, or bus, particularly if the trip is longer than 4 hours

Do heel toe exercises or circle your feet if you cannot move around

Stop at least every two hours when you drive, and get out and move around

Drink a lot of water and wear loose fitted clothing when you travel

Talk to your doctor about your risk of clotting whenever you take hormones, whether for birth control or replacement therapy, or during and right after any pregnancy

Follow any self-care measures to keep heart failure, diabetes, or any other health issues as stable as possible”

And we have yet another reason to be extra cautious if you have CKD.

Until next week,

Keep living your life!

 

Keep It Where It Belongs 

You’ve all read about my cancer dance in one blog or another. Thank goodness, that’s over. But there are residual effects like hand and foot neuropathy, chemo brain (akin to CKD’s brain fog), and – to my great surprise – abdominal incisional hernia after surgery. How did that happen, I wondered.

Get ready for this: those with Chronic Kidney Disease have a 12.8% higher incidence of abdominal incisional hernia according to a PubMed 2013 study published on ResearchGate’s site available at https://bit.ly/3kdvxfl,

“Chronic kidney disease is associated with impaired wound healing and constitutes an independent risk factor for incisional hernia development.”

(The percentage of abdominal incisional hernia among CKD patients was taken from the cohort in this abstract.)

According to the same study:

“Elevated uremia toxins may inhibit granulation tissue formation and impair wound healing, thereby promoting incisional hernia development.”

As Chronic Kidney Disease patients, we know the accumulation of uremia toxins as uremia. On to my favorite dictionary, the Merriam-Webster at https://www.merriam-webster.com/dictionary/uremia for a definition of uremia:

“1: accumulation 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”

It gets worse. First, you have to know that I am considered ‘elderly,’ another surprise.  According to The World Health Organization at https://bit.ly/32sQq05:

“Most developed world countries have accepted the chronological age of 65 years as a definition of ‘elderly’ or older person….”

I’m 73 and here’s why you needed this information that I am of advancing age.

“The risk factors for incisional hernia following abdominal surgery include (ranked by relative risk):

Emergency surgery

Emergency surgery carries double the risk of elective surgery.

Wound type

BMI >25

Obese patients are more likely to develop an incisional hernia

Midline incision

There is a 74% risk increase compared to non-midline

Wound infection

This increases incisional hernia risk by 68%.

Pre-operative chemotherapy

Intra-operative blood transfusion

Advancing age

Pregnancy

Other less common risk factors include chronic cough, diabetes mellitus, steroid therapy, smoking, and connective tissue disease.”

Thank you TeachMeSurgery at https://bit.ly/2GYrOUH for this risk factor information.

I have so many risks factors. Foremost for me, of course, is Chronic Kidney Disease as demonstrated earlier in this blog, but also advancing age. Oh no, we’ll have to add obesity since my oncologist just told me my BMI is higher than 25 and must be lowered in order to keep the possibility of cancer reoccurrence to a minimum.  Then there’s midline incision. My scar runs down the middle of my front from the breasts to below the belly button. Oh, and let’s not forget pre-operative chemotherapy. I had plenty of that. Then there’s intra-operative blood transfusion… to the tune of six for me. I almost forgot to include diabetes mellitus. Hmm, I do believe I had steroid therapy during my chemotherapy treatments, too.

Now what? The hernia is right there, visibly noticeable along the scar line and I understand all the possible reasons it’s there. We all know I have to do something about it, but why? Healthline at https://www.healthline.com/health/hernia#complications answers that question for us.

“Sometimes an untreated hernia can lead to potentially serious complications. Your hernia may grow and cause more symptoms. It may also put too much pressure on nearby tissues, which can cause swelling and pain in the surrounding area.

A portion of your intestine could also become trapped in the abdominal wall. This is called incarceration. Incarceration can obstruct your bowel and cause severe pain, nausea, or constipation.

If the trapped section of your intestines doesn’t get enough blood flow, strangulation occurs. This can cause the intestinal tissue to become infected or die. A strangulated hernia is life-threatening and requires immediate medical care.”

Uh-oh. What can I do? My oncologist suggested a wait and see approach with a twist. I’m now wearing something similar to the belly band that pregnant women wear. The differences are that this is worn around my body to cover the hernia and is very tight in an attempt to have the hernia heal itself. Will this work? That remains to be seen.

What if it doesn’t? Well, there’s always surgery. The National Center for Biotechnology Information (NCBI) at https://bit.ly/3hsFHae tells us,

“The treatment options for incisional hernias are open surgery or minimally invasive surgery. Minimally invasive surgery is also called ‘keyhole surgery,’ or ‘laparoscopic’ surgery if it is performed on the abdomen.”

Wait a minute, laparoscopic surgery. What’s that? Let’s go to MedlinePlus to see what we can find out. This explanation was at https://bit.ly/2RmkS5R.

“Laparoscopic surgery is a surgical technique in which short, narrow tubes (trochars) are inserted into the abdomen through small (less than one centimeter) incisions. Through these trochars, long, narrow instruments are inserted. The surgeon uses these instruments to manipulate, cut, and sew tissue.”

That does seem less invasive, but it’s still surgery. Let’s take a look at recovery time for laparoscopic surgery vs. open surgery. Open surgery is just what it sounds like: you’re cut open.

“When the surgeons are equally skilled and a procedure is available as both an open procedure and a minimally invasive one, the minimally invasive technique almost always offers a lower risk of infection, shorter recovery times and equally successful outcomes.”

Mind you, sometimes keyhole or laparoscopic surgery is not a choice since the surgeon needs to work on a larger area. For example, I had open cancer surgery since not only the tumor, but also my gall bladder and spleen, needed to be removed. Sometimes, what starts out as minimally invasive surgery becomes open surgery when the surgeons run into a problem or realize they need to work on a larger internal area than they’d originally thought.

I still find it amazing how connected all parts of our body are… like Chronic Kidney Disease adding to affecting a scar to the point that a hernia develops.

Until next week,

Keep living your life!

The Dye is Cast

Bet you think I made a spelling error in the title. If you’re thinking of the original phrase, you’re right. In that one, it’s spelled ‘die’. Here’s where it came from according to Wikipedia at https://en.wikipedia.org/wiki/Alea_iacta_est:

Alea iacta est (‘The die has been cast’) is a variation of a Latin phrase (iacta alea est [ˈjakta ˈaːlɛ.a ˈɛst]) attributed by Suetonius to Julius Caesar on January 10, 49 BCE, as he led his army across the Rubicon river in Northern Italy…. The phrase, either in the original Latin or in translation, is used in many languages to indicate that events have passed a point of no return. It is now most commonly cited with the word order changed (‘Alea iacta est’) rather than in the original phrasing….”

Uh-oh, there is in existence a phrase just like the title of today’s blog. It means the tint has been applied and can’t be changed or something like that.That this phrase with this spelling exists was a bit surprising. What I meant in the title is the dye used in contrast CTs.

Let’s back up just a bit so we can explain what a CT is. The Mayo Clinic at https://mayocl.in/3jujqdk tells us:

A computerized tomography (CT) scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body. CT scan images provide more-detailed information than plain X-rays do.”

I’ll be having one with contrast this afternoon. You know we, as CKD patients, have been warned not to allow that contrast into our bodies. Let’s find out why and then I’ll tell you why I am allowing it. The contrast is the dye in the title of today’s blog.

“In a CT scan, dense substances like bones are easy to see. But soft tissues don’t show up as well. They may look faint in the image. To help them appear clearly, you may need a special dye called a contrast material. They block the X-rays and appear white on the scan, highlighting blood vessels, organs, or other structures.Contrast materials are usually made of iodine or barium sulfate. You might receive these drugs in one or more of three ways:

  • Injection: The drugs are injected directly into a vein. This is done to help your blood vessels, urinary tract, liver, or gallbladder stand out in the image.
  • Orally: Drinking a liquid with the contrast material can enhance scans of your digestive tract, the pathway of food through your body.
  • Enema: If your intestines are being scanned, the contrast material can be inserted in your rectum.

After the CT scan, you’ll need to drink plenty of fluids to help your kidneys remove the contrast material from your body.”Thank you, WebMD at https://www.webmd.com/cancer/what-is-a-ct-scan#2 for the above information.

Of course, now we need to know why we shouldn’t be having this contrast material. Radiology Affiliates Imagining at https://4rai.com/blog/can-contrast-hurt-my-kidneys, a new site for me but one that seems very thorough, explains that we just don’t know for sure:

“…. Unhealthy kidneys, though, may be slower and less efficient when it comes to clearing the contrast from the blood. While the medical community has not yet determined exactly how contrast dye causes kidney problems, they think it has to do with this slow clearance of the dyes from the body.”

Well, what problems can contrast dye cause for our kidneys? I went right to the National Kidney Foundation at https://bit.ly/2YL7RXv  for an answer to this question

“What is Contrast Induced Nephropathy (CIN)?

CIN is a rare disorder and occurs when kidney problems are caused by the use of certain contrast dyes. In most cases contrast dyes used in tests, such as CT (computerized tomography) and angiograms, have no reported problems. About 2 percent of people receiving dyes can develop CIN. However, the risk for CIN can increase for people with diabetes, a history of heart and blood diseases, and chronic kidney disease (CKD)….The risk of CIN in people with both CKD and diabetes is 20 to 50 percent.

CIN is associated with a sharp decrease in kidney function over a period of 48-72 hours. The symptoms can be similar to those of kidney disease, which include feeling more tired, poor appetite, swelling in the feet and ankles, puffiness around the eyes, or dry and itchy skin. In many cases, CIN is reversible and people can recover. However, in some cases, CIN can lead to more serious kidney problems and possible heart and blood vessel problems

What is Nephrogenic Systemic Fibrosis (NSF)?

NSF is a rare but serious disease affecting skin and other organs that has been found in some patients with advanced CKD after exposure to gadolinium-containing contrast dyes that are used in magnetic resonance imaging (MRI). NSF appears to affect about 4 percent of patients with advanced CKD. People with acute kidney injury (AKI) are also at higher risk. NSF has not been reported in people with mild kidney damage or normal kidney function.

NSF can be painful, debilitating, or even fatal. Symptoms and signs of NSF can include burning and itching of the skin, red or dark patches on the skin, joint stiffness, or muscle weakness. The disease can develop within 24 hours up to around 3 months….  delay in excretion [of this drug] is thought to be one the main reasons why NSF may happen.”

Notice that both possible effects of using contrast dye with kidney disease are rare.

So why am I having the contrast dye when I’ve been advised not to? My oncology team needs to see if the cancer has returned and, if it has, how badly. I told them at the beginning of my treatment to spare my kidneys as much as possible. But, in this case, I don’t want them to spare my kidneys so much that I end up dead of cancer.

There are two kinds of dye used, one less harmful to the kidneys than the other. I believe that’s the one that is used on me. It is also reduced in order to save me from any possible further kidney damage. Most importantly, my creatinine level is measured before administering the contrast dye. After a year and a half of this, my kidneys are doing just as well as they were doing before I started allowing contrast dye.

This is my story; remember, everyone is different and talk this over with your nephrologist before you agree to contrast dye. My nephrologist and I agreed that I needed to be alive more than I needed to save my kidneys.

Until next week,

Keep living your life!

I Can’t Eat That 

Now that I’m cancer free, I’ve resumed visits to all the other specialists (Isn’t growing older wonderful?) I had been seeing before the cancer diagnosis. One of these specialists was my immunologist, who had suggested I stop taking my allergy injections while I was doing chemotherapy since the chemo would change many of the conditions in my body. She was right. I no longer need the monthly injections for seasonal allergies, but there are certain foods I can no longer eat.

Why not, you may be asking yourself. Easy answer? I’m allergic to them. Wait just a minute here. What exactly does allergic mean and how will this affect your Chronic Kidney Disease?

The Merriam-Webster dictionary at https://www.merriam-webster.com/dictionary/allergy tells us that allergy means,

“1altered bodily reactivity (such as hypersensitivity) to an antigen in response to a first exposure….

2exaggerated or pathological immunological reaction (as by sneezing, difficult breathing, itching, or skin rashes) to substances, situations, or physical states that are without comparable effect on the average individual

3medical practice concerned with allergies

4a feeling of antipathy or aversion”

It’s definition number two for us. Maybe an explanation of those monthly allergy injections would be helpful here, too. The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/allergy-shots/about/pac-20392876#:~:text=If%20you%20get%20weekly%20or,reaction%2C%20particularly%20a%20local%20reaction had the explanation we needed:

“Allergy shots are regular injections over a period of time — generally around three to five years — to stop or reduce allergy attacks. Allergy shots are a form of treatment called immunotherapy. [Gail here: Hence, the specialist who treats allergies is called an immunologist.] Each allergy shot contains a tiny amount of the specific substance or substances that trigger your allergic reactions. These are called allergens. Allergy shots contain just enough allergens to stimulate your immune system — but not enough to cause a full-blown allergic reaction.

Over time, your doctor increases the dose of allergens in each of your allergy shots. This helps get your body used to the allergens (desensitization). Your immune system builds up a tolerance to the allergens, causing your allergy symptoms to diminish over time.”

Lucky me: no more seasonal allergies. Let’s get back to those food allergies and CKD now… or not. While I found quite a bit of information about drug allergies, I found very little about food allergies. It’s nice to know my allergies to shellfish and vanilla will not harm my kidneys. Come to think of it, I don’t eat these foods because I’m allergic to them, so they’re not in my system anyway.

Hmmm, is it any different with food sensitivities? How’s about a definition first. It’s so nice to have a favorite dictionary. This is what The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/sensitivity?utm_campaign=sd&utm_medium=serp&utm_source=jsonld has to say:

“the quality or state of being sensitive: such as

athe capacity of an organism or sense organ to respond to stimulation: IRRITABILITY

bthe quality or state of being hypersensitive

cthe degree to which a radio receiving set responds to incoming waves

dthe capacity of being easily hurt

eawareness of the needs and emotions of others”

Definition a is the one we need.

Again, I did not find enough validation that food sensitivities could damage our kidneys to write about it.

Maybe I’m looking at this backwards. Maybe it’s not do food sensitivities and allergies damage our kidneys that I should be dealing with, but rather can they cause kidney damage. Back to the internet. Will you look at that? Again, there was much more information about drug allergies damaging your kidneys and very little about food allergies or sensitivities.

I’ve satisfied myself that, just as with my food allergies, my sensitivity to lactose, wheat, fructose syrup, and acidic foods will not harm my kidneys. Although, they may cause me to read more food labels than I usually do. Hopefully, you’re satisfied that your food allergies and sensitivities will not harm your kidneys. If you’re still concerned, speak with your nephrologist or renal dietitian.

Of course, none of this means we can ignore the kidney diet. That is, not if you want to slow down the progression of the decline of your kidney function. Eat according to your labs. Keep watching your potassium, phosphorous, protein, and sodium restrictions. This is highly individualized, so again: speak with your nephrologist or renal dietitian should you have questions.

While we’re on the subject of food, do you remember when I wrote about Flavis? That’s the low sodium, low phosphorus, low potassium food company. Bear made a beef stew which we decided to eat upon a layer of pasta. We chose Flavis’s fusilli. That’s a kind of short, spiral pasta. I have got to say it was delicious. I like that it tastes so light, especially since I usually find pasta so heavy.   

News! I’ve gotten so many emails asking where readers can buy my books that I’ve made each title clickable. Click on the title and you go directly to the book’s page on Amazon.com. The titles are to the right of the blog itself on the blog roll.

I know, especially now in the time of Covid-19, that money can be an issue and even the $2.99 for the digital version of each of the books can be $2.99 too much. In that case, I suggest you request your library order the book and then you can borrow it for free. Even libraries that have shut down have virtual sites now. I do humbly request reviews from those of you who read the books. You can leave them on the Amazon.com page for each book. Thank you in advance.

Until next week,

Keep living your life!

It’s Not Your Hands and Feet; It’s Your Brain.

Here I sit feeling so incredibly pleased that I don’t have pancreatic cancer anymore. Yet, at the same time, I’m so very displeased with the neuropathy that has me using a cane and causing my fingers to hit between the keys on the keyboard instead of on them. I’ve already mentioned in a previous blog that this is a brain connection problem. Today, I’d like to explore that more.

Let’s start with something simple before we wade into what I suspect is going to be complex. Lexico’s English Dictionary at https://www.lexico.com/en/definition/neuropathy tells us neuropathy is,

“Disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.”

I get the numbness or weakness, but what are peripheral nerves? I went to WebMD at https://www.webmd.com/brain/understanding-peripheral-neuropathy-basics#1 for help.

“The name of the condition tells you a bit about what it is:

Peripheral: Beyond (in this case, beyond the brain and the spinal cord.)
Neuro-: Related to the nerves
-pathy: Disease

Peripheral neuropathy refers to the conditions that result when nerves that carry messages to and from the brain and spinal cord from and to the rest of the body are damaged or diseased.

The peripheral nerves make up an intricate network that connects the brain and spinal cord to the muscles, skin, and internal organs. Peripheral nerves come out of the spinal cord and are arranged along lines in the body called dermatomes. Typically, damage to a nerve will affect one or more dermatomes, which can be tracked to specific areas of the body. Damage to these nerves interrupts communication between the brain and other parts of the body and can impair muscle movement, prevent normal sensation in the arms and legs, and cause pain.”

Let’s see if we can find out what these nerves are. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/14737-neuropathy has an easily understood answer for us,

“The peripheral nervous system is made up of three types of nerves, each with an important role in keeping your body healthy and functioning properly.

  • Sensory nerves carry messages from your five senses (sight, hearing, smell, taste, touch) through your spinal cord to your brain. For example, a sensory nerve would communicate to your brain information about objects you hold in your hand, like pain, temperature, and texture.
  • Motor nerves travel in the opposite direction of sensory nerves. They carry messages from your brain to your muscles. They tell your muscles how and when to contract to produce movement. For example, to move your hand away from something hot.
  • Autonomic nerves are responsible for body functions that occur outside of your direct control, such as breathing, digestion, heart rate, blood pressure, sweating, bladder control and sexual arousal. The autonomic nerves are constantly monitoring and responding to external stresses and bodily needs. For instance, when you exercise, your body temperatures increases. The autonomic nervous system triggers sweating to prevent your body’s temperature from rising too high.

The type of symptoms you feel depend on the type of nerve that is damaged.”

Now the biggie: What causes neuropathy? MedicineNet at https://www.medicinenet.com/peripheral_neuropathy/article.htm was right there with an answer.

  1. Diabetes mellitus
  2. Shingles (post herpetic neuralgia)
  3. Vitamin deficiency, particularly B12 and folate
  4. Alcohol
  5. Autoimmune diseases, including lupusrheumatoid arthritis or Guillain-Barre syndrome
  6. AIDS, whether from the disease or its treatment, syphilis, and kidney failure
  7. Inherited disorders, such as amyloid polyneuropathy or Charcot-Marie-Tooth disease
  8. Exposure to toxins, such as heavy metals, gold compounds, lead, arsenic, mercury, and organophosphate pesticides
  9. Cancer therapy drugs such as vincristine (Oncovin and Vincasar) and other medications, such as antibiotics including metronidazole (Flagyl) and isoniazid
  10. Rarely, diseases such as neurofibromatosis can lead to peripheral neuropathy. Other rare congenital neuropathies include Fabry disease, Tangier disease, hereditary sensory autonomic neuropathy, and hereditary amyloidosis.
  11. Statin medications have been linked to peripheral neuropathy, although neuropathy caused by statins only rarely causes symptoms.

While diabetes and postherpetic neuralgia are the most common causes of peripheral neuropathy, oftentimes no cause is found. In these situations, it is referred to as idiopathic peripheral neuropathy.”

Uh-oh, diabetes, Vitamin B12 deficiency, cancer therapy drugs, antibiotics, and statins. Any of these could have caused my neuropathy. Since many Chronic Kidney Disease patients develop diabetes (which is also the foremost cause of CKD), you need to keep your eyes open for the symptoms.

Of course, knowing the symptoms would be helpful. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061 explains:

“Signs and symptoms of peripheral neuropathy might include:

  • Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms
  • Sharp, jabbing, throbbing or burning pain
  • Extreme sensitivity to touch
  • Pain during activities that shouldn’t cause pain, such as pain in your feet when putting weight on them or when they’re under a blanket
  • Lack of coordination and falling
  • Muscle weakness
  • Feeling as if you’re wearing gloves or socks when you’re not
  • Paralysis if motor nerves are affected

If autonomic nerves are affected, signs and symptoms might include:

  • Heat intolerance
  • Excessive sweating or not being able to sweat
  • Bowel, bladder or digestive problems
  • Changes in blood pressure, causing dizziness or lightheadedness”

Treatment may be any number of things. Medical News Today at https://www.medicalnewstoday.com/articles/147963#treatment elucidates for us:

“Treatment either targets the underlying cause, or it aims to provide symptomatic pain relief and prevent further damage.

In the case of diabetic neuropathy, addressing high blood sugars can prevent further nerve damage.

For toxic causes, removing the exposure to a suspected toxin, or stopping a drug, can halt further nerve damage.

Medications can relieve pain and reduce burning, numbness, and tingling.

Drug treatment for neuropathic pain

Medications that may help include:

  • drugs normally used for epilepsy, such as carbamazepine
  • antidepressants, such as venlafaxine
  • opioid painkillers, for example, oxycodone or tramadol

Opioid painkillers come with warnings about safety risks.

Duloxetine may help people with chemotherapy-induced neuropathy.

Doctors can also prescribe skin patches, such as Lidoderm, for temporary, localized pain relief. This contains the local anesthetic lidocaine. The patches are like bandages, and they can be cut to size.

The choice of drug should take into account medications for other conditions, to avoid unwanted interactions.”

Before I close, do you remember my writing about Flavis’s low protein products? We combined their penne with Bear’s signature ground turkey spaghetti sauce and it was exquisite. I’m not one for heavy pasta, so I really liked how light and delicate it tasted.

Until next week,

Keep living your life!

D’immunity

I can just see your faces now. Huh? What is that? The concept makes sense, but the word doesn’t. Do you remember my mentioning that one of the joys of being a writer is that you make up words? Well, that’s one I made up right after my doctor talked with me about vitamin D and immunity. He was talking about warding off a reoccurrence of cancer, but when I started researching I found that it has to do with all immunity.

Wait a minute. Just as I keep reminding you that I’m not a doctor and never claimed to be one, it’s important you realize that when I use the word ‘research,’ I mean searching the web and whatever journals or texts I have available. I am not a researcher in the true sense of the word. My favorite dictionary, The Merriam-Webster at https://www.merriam-webster.com/dictionary/research can help us out here:

1: careful or diligent search

2: studious inquiry or examination especially investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws

3: the collecting of information about a particular subject”

(‘Er’ is a suffix that means ‘one who,’ so a researcher is one who researches.) Most of us think of a researcher as the second definition. I think of myself as the third definition.

Okay, now that’s cleared up let’s get back to the miraculous vitamin D and your immunity. ScienceDaily at https://www.sciencedaily.com/releases/2019/04/190417111440.htm tells us,

“The University of Edinburgh team focused on how vitamin D affects a mechanism in the body’s immune system — dendritic cells’ ability to activate T cells.

In healthy people, T cells play a crucial role in helping to fight infections. In people with autoimmune diseases, however, they can start to attack the body’s own tissues.

By studying cells from mice and people, the researchers found vitamin D caused dendritic cells to produce more of a molecule called CD31 on their surface and that this hindered the activation of T cells.

The team observed how CD31 prevented the two cell types from making a stable contact — an essential part of the activation process — and the resulting immune reaction was far reduced.

Researchers say the findings shed light on how vitamin D deficiency may regulate the immune system and influence susceptibility to autoimmune diseases.

The study, published in Frontiers in Immunology, was funded by the Medical Research Council, Biotechnology and Biological Sciences Research Council, Natural Environment Research Council and Wellcome.”

If you’re like me, you’ll need help with some of these terms.

Dendritic cells are:

“a branching cell of the lymph nodes, blood, and spleen that functions as a network trapping foreign protein,”

according to Dictionary.com at https://www.dictionary.com/browse/dendritic-cell.

Let’s take a look at T cells now. I was comfortable with MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=11300’s definition:

“T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders.

Immature T cells (termed T-stem cells) migrate to the thymus gland in the neck, where they mature and differentiate into various types of mature T cells and become active in the immune system in response to a hormone called thymosin and other factors. T-cells that are potentially activated against the body’s own tissues are normally killed or changed (“down-regulated”) during this maturational process.”

I’m sure my doctor had been telling me about this during the course of my treatment, but last week – now that I’ve been declared cancer free – immunity became a big issue to me and I finally listened with both ears. Maybe you should, too, since we’re in the middle of the Corona Virus Pandemic.

Let’s get some more information about vitamin D and your immunity. Healthline at https://www.healthline.com/nutrition/vitamin-d-coronavirus#effect-on-immune-health gives us another view of vitamin D and the immune system:

“Vitamin D is necessary for the proper functioning of your immune system, which is your body’s first line of defense against infection and disease.

This vitamin plays a critical role in promoting immune response. It has both anti-inflammatory and immunoregulatory properties and is crucial for the activation of immune system defenses ….

Vitamin D is known to enhance the function of immune cells, including T-cells and macrophages, that protect your body against pathogens….

In fact, the vitamin is so important for immune function that low levels of vitamin D have been associated with an increased susceptibility to infection, disease, and immune-related disorders ….

For example, low vitamin D levels are associated with an increased risk of respiratory diseases, including tuberculosis, asthma, and chronic obstructive pulmonary disease (COPD), as well as viral and bacterial respiratory infections….

What’s more, vitamin D deficiency has been linked to decreased lung function, which may affect your body’s ability to fight respiratory infections….”

I caught a word or two in that explanation that we may need defined.

Vocabulary.com at https://www.vocabulary.com/dictionary/pathogen informs us that a pathogen is,

“… is a tiny living organism, such as a bacterium or virus, that makes people sick. Washing your hands frequently helps you avoid the pathogens that can make you sick.”

How about macrophages? I went to News Medical Life Sciences at for their definition.

“Macrophages are important cells of the immune system that are formed in response to an infection or accumulating damaged or dead cells. Macrophages are large, specialized cells that recognize, engulf and destroy target cells. The term macrophage is formed by the combination of the Greek terms “makro” meaning big and “phagein” meaning eat.”

This must be what my doctor was talking about re cancer.

On another note: I am 73, still undergoing chemotherapy, and have Chronic Kidney Disease. Please be kind to me and others like me by wearing your mask, even if you hate it or think it makes you look weak. You could be saving my life.

Until next week,

Keep living your life!

National Kidney Month is Almost Over

Welcome to the next to last day of National Kidney Month, 2020. Of course, that doesn’t mean you should stop taking care of your kidneys or spreading Chronic Kidney Disease awareness once National Kidney Month is over, but I don’t have to tell you that, do I? What I’d like to tell you about instead is the ins and outs of National Kidney Month.

In my latest book (Cancer has definitely slowed the arrival of SlowItDownCKD 2019, but soon, my friends, soon.) SlowItDownCKD 2018, I wrote:

“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. [Added today: Come to think of it, some readers have asked me where to get CKD ribbons. This is what this site sells among other things.]

‘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 [Added today: This year’s theme for National Kidney Month is high blood pressure and your kidneys.] or a family history of kidney failure. There are more than 30 million Americans [Added today: 31 million this year] who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed….’

I wanted to share this quote from the American Kidney Fund 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 URL 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.”

This year (2019), I noticed that The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month offers us even more information during National Kidney Month:

“March is National Kidney Month, a time when communities across the country raise awareness about kidney disease. In partnership with the National Heart, Lung, and Blood Institute (NHLBI), this year’s focus is the link between high blood pressure and kidney disease.

If you have high blood pressure, you’re at risk for chronic kidney disease, a serious condition that can lead to stroke, heart attack, kidney failure, and death.

The good news is that you can help protect your kidneys by managing high blood pressure with these 6 healthy lifestyle habits.

  1. Take medications as prescribed.  Your doctor may prescribe blood pressure-lowering medications that are effective in slowing the development of kidney disease.
  2. Aim for a healthy weight. If you are overweight or obese, losing even a small amount of weight can improve blood pressure readings.
  3. Select healthier food and beverage options.  Focus on fruits and vegetables, lean meat, whole grains, and other heart-healthy foods.
  4. Try to quit smoking. If you smoke, take steps to quit.
  5. Get enough sleep. Aim for 7 to 8 hours of sleep per night.
  6. Manage stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day.

Learn more about high blood pressure and kidney disease

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 awareness.

Until next week,

Keep living your life!

Dax’s Journey to Dialysis Friendly Clothing

I met Dax Francis a few years ago in a Facebook CKD & Dialysis Support page. Slowly, I became aware that he produces dialysis clothing… and that fascinated me. Then it dawned on me that you should know such clothing exists, although Dax is not the only one who produces them. I asked him if he would write a guest blog explaining how this all started and where he got the idea. He promptly agreed and that will be today’s blog, the first blog in March, National Kidney Month.

Before we read Dx’s blog, some of us may need a reminder of what FSGS is. According to The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693:

“Focal segmental glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood (glomeruli). FSGS can be caused by a variety of conditions.

FSGS is a serious condition that can lead to kidney failure, for which the only treatment options are dialysis or kidney transplant. Treatment options for FSGS depend on the type you have.”

I think we’re ready for Dax’s guest blog now.

My name is Dax Francis. I was diagnosed with FSGS as a young man, age twelve, and it was as if overnight school, sports, and friends were replaced with doctors, hospitals, and treatments. I struggled to find my place in this new body that could no longer do the things that had defined my life. Shortly after I graduated from high school, I had to begin dialysis which set me down a dark path of loneliness, depression, and sadness.

When I began dialysis I wanted everything to end. This was not the life I had ever wanted, and I believed that all my abilities, my skills, and talents were hidden behind a treatment filled with pain. The strength it took to live in that struggle was too much, and I put myself in situations where everything could have and should have ended. I was lost, and then I got that call saying it was my turn for a kidney transplant.

This was it! This is my moment to start my life! And then FSGS recurred shortly after surgery, and I was never able to leave treatment.

Devastation, utter devastation. I could not let my donor down though and felt a need to try to pursue my life once more despite the struggle. I enrolled in school for Social Work. I wanted to use my experiences to help those who may be in similar situations as myself, and I found my calling. Being able to help others and learn from those with wholly different lives and experiences than mine was the greatest gift I could have ever been given.

As I had all but finished the Social Work program, I realized that I could not be the social worker that people deserved due to my health. Being on treatment three times a week made it difficult to find work, and I rarely felt well enough to continually work. I struggled with this, feeling like I was never going to have a way to be a part of the world and the community nor was a place for me or anyone like me. This fact made me feel worthless and I dropped out of college 6 credits shy of my degree, because I thought it was pointless.

I wandered, confused, and didn’t know how to be someone who could make a difference. The wisdom I had gained from fighting every day to survive, I felt, was something special and I just wanted someone to ask me what I had learned while living in the struggle that is chronic illness. I just wanted someone to take notice of my fight and my struggle and see the person who can make a difference because of it all.

After the passing of a close friend I needed to live for both of us and put myself out there where I met someone who changed my life. I met someone who saw my fight and helped me realize that all I had been through made me capable of so much. She believed in me when I couldn’t believe in myself, this enabled me to live a life that I had always dreamed of, and I was doing it all despite being on dialysis. I was able to meet the love of my life despite the struggle. It all started with putting my true self out there and not being afraid of being that true person sharing with light and love.

I enrolled back in school and finished my 6 credits finally achieving my degree. During this time the world began to change. More and more negativity seemed to be seeping into my life and I found myself in a negative space despite having everything I wanted. I needed to make a change. At the end of 2017 I committed to being positive, uplifting and to helping others the way I can. I started making videos while I was actually on dialysis just to let others know that they were not alone and that they needed to continue their fight.

The support I received from those first videos inspired me to do more with my talents and abilities and Ivye Wear was born on the morning of January 13, 2018. I wanted to provide comfort, warmth, and hope to the warriors fighting every day to survive, often with little recognition of the strength it takes to survive and live in that struggle. I wanted to provide a suit of armor for the warrior when they go into battle; whether it’s dialysis, chemotherapy, infusions, or something else entirely, and I designed comfortable, accessible clothing designed for a range of medical treatments, procedures, and devices. Sweats, Hoodies, and T-Shirts designed for warriors, by warriors. All of our clothes provide zipper access to the vital areas your caregivers need to perform treatment while you can stay warm and dignified.

I never want anyone to feel as if they don’t have a place in this world due to their illness or struggle, Ivye Wear was born to be a beacon of hope for all chronic illness patients. I believe that it is our experiences that give us the strength, wisdom, and patience to change the world.

Thank you, Dax, for your honesty and especially for the dialysis clothing.

Until next week,

Keep living your life!

Close Your Eyes…

One of the first things the oncology nurse cautioned me about was closing my eyes in the shower – except when I was washing my face. How odd, I thought. I’d been closing my eyes in the shower the entire 12 years I’d had Chronic Kidney Disease. It was just so restful.

Being who I am and doing what I do, I asked her why I needed them open. She explained kindly, but as if I were lacking in intelligence. Remember, she and I had just met. She told me that closing your eyes can impede keeping your balance and at 72 (then), the last thing I wanted was to fall and possibly break a hip.

I had been putting myself at such risk for years without knowing it. Have you?

Let’s see if we can figure out the logic, even the science behind this. According to Wikipedia at https://en.wikipedia.org/wiki/Sense_of_balance:

“The sense of balance or equilibrioception is one of the physiological senses related to balance. It helps prevent humans and animals from falling over when standing or moving. Balance is the result of a number of body systems working together: the eyes (visual system), ears (vestibular system) and the body’s sense of where it is in space (proprioception) ideally need to be intact. The vestibular system, the region of the inner ear where three semicircular canals converge, works with the visual system to keep objects in focus when the head is moving. This is called the vestibulo-ocular reflex (VOR)…. The balance system works with the visual and skeletal systems (the muscles and joints and their sensors) to maintain orientation or balance. Visual signals sent to the brain about the body’s position in relation to its surroundings are processed by the brain and compared to information from the vestibular and skeletal systems.”

While Wikipedia is a fine place to start researching when you have no idea how to research a certain subject, you need to keep in mind that anyone can edit any entry at any time… whether or not they have the credentials or knowledge to do so.

That’s a lot of information all at once. Let’s slow this down and go bit by bit. The Royal Victorian Eye and Ear Hospital at https://www.eyeandear.org.au/page/Patients/Patient_information/Balance_Disorders/How_does_the_balance_system_work/ informs us that,

“The vestibular system (inner ear balance mechanism) works with the visual system (eyes and the muscles and parts of the brain that work together to let us ‘see’) to stop objects blurring when the head moves. It also helps us maintain awareness of positioning when, for example, walking, running or riding in a vehicle. In addition, sensors in the skin, joints and muscles provide information to the brain on movement, the position of parts of the body in relation to each other, and the position of the body in relation to the environment. Using this feedback, the brain sends messages to instruct muscles to move and make the adjustments to body position that will maintain balance and coordination.”

I just counted five different parts to our ever present balancing act. Yet, I’d thought it only had to do with the inner ear and wondered why I needed to keep my eyes open in order to keep my balance. Oh my, and each of the five different parts to our ever present balancing act have several parts of their own.

Let’s take a close look at the visual system. I found this information on the blog page of the Shores of Lake Phalen (a senior living community) at https://www.theshoresoflakephalen.com/how-does-vision-affect-balance/:

“The Anatomy of the Eye

First, let’s address the anatomy of the eye. The human eye contains little nerve endings with light-sensitive cells called rods and cones. The rods and cones send signals to the brain through the optic nerve, helping the brain interpret what we see. Those images help us determine how close we are to certain objects – for example, a set of stairs. If your visual system were malfunctioning, you wouldn’t be able to tell how far you needed to raise your foot to reach the next step.”

Okay, fair enough. While this is not particularly a medical site, I like the plain English of the explanation. Now I understand why, when I open my eyes after having closed them to wash the shampoo out of my hair (Yay! I finally have hair again.), I’m not always in the position I’d thought I was.

And the vestibular system? I turned to Vestibular.org at https://vestibular.org/understanding-vestibular-disorder/human-balance-system for help with this one.

“Sensory information about motion, equilibrium, and spatial orientation is provided by the vestibular apparatus, which in each ear includes the utricle, saccule, and three semicircular canals. The utricle and saccule detect gravity (information in a vertical orientation) and linear movement. The semicircular canals, which detect rotational movement, are located at right angles to each other and are filled with a fluid called endolymph. When the head rotates in the direction sensed by a particular canal, the endolymphatic fluid within it lags behind because of inertia, and exerts pressure against the canal’s sensory receptor. The receptor then sends impulses to the brain about movement from the specific canal that is stimulated. When the vestibular organs on both sides of the head are functioning properly, they send symmetrical impulses to the brain. (Impulses originating from the right side are consistent with impulses originating from the left side.)”

But this is the one we grew up thinking was responsible for balance. As a child, I had no idea that vision was involved. Did you? Hmmm, the joints are involved, too, as is the brain. We haven’t even touched proprioception and won’t be able to for lack of room, but do click through to the word in this sentence for more information about that. It will take you back to the Wikipedia entry.

Keep those eyes open in the shower as much as possible. That may be easier now that you understand how it will help your balance.

Until next week,

Keep living your life!

Why Wait?

A few weeks ago, I received an email from Joe Russell. He works on health care policy issues for my Arizona Senator Sinema in Washington D.C., along with his colleague Sylvia Lee, policy advisor. He was letting me know both Sylvia and he would be in Arizona the following week, and holding a roundtable discussion with patients suffering from kidney disease, along with their providers, caregivers, and family members. They wanted to discuss a series of legislative proposals their office would be working on in the coming months, as well as gain a better understanding of the unique challenges patients with kidney disease face in Arizona. The National Kidney Foundation of Arizona recommended they reach out to me, given my work and experience on this topic.

Are you kidding, I thought. I’ve been trying to get someone in Arizona interested in the growth of CKD locally… and, of course, everywhere else, for over 12 years. Now, mind you, by 3:30 I’m exhausted (Damn chemo!), but I vowed to go even though it was later in the day (3 p.m.). And I did.

When I arrived, who did I see sitting at Senator Sinema’s table, but Raymond and Analyn Scott. They are the compilers of The 1 in 9 Tribe to which I had contributed a chapter. There were people from the National Kidney Foundation of Arizona, a transplant patient, my very own nephrologist (who is also Raymond’s) and Senator Sinema’s delegation.

Oh boy, I remember thinking, this is going to be good. And it was. Each person spoke to their own stage of CKD with Dr. DeSai (Raymond’s and my nephrologist) and the National Kidney Foundation of Arizona people speaking about all stages of CKD. I kept steering the discussion back to early stage treatment and awareness for all. It seemed all were in agreement with my ideas or, at least, they were interested.

But I want to let you know why I feel early intervention and general awareness are so important. This is a note I received from a reader.

”Please help. I just got blood results back from my yearly physical and saw that my eGFR was 55 and my creatinine was 1.09. After speaking to my GP she told me my results were nothing to ‘be concerned about’. Since the 2 above mentioned results were highlighted in red I figured perhaps I should ‘concern’ myself about it and research what it could possibly mean. I was shocked to read that it indicated kidney disease. When I told my doctor of my findings, she again pushed it off as nothing to worry about. Am I over reacting? Thanks for any help you can give me.”

Now we don’t know this reader’s age. That’s important because you lose one point off your Glomerular Filtration Rate every year once you hit the age of 40. For example, I turned 73 yesterday (Yes, it was a fun birthday with my family and friends despite the effects of chemo.). Subtract 40 from that and I have lost 33 points off my GFR simply by being alive and growing older. Considering the highest GFR is 120, although we usually use 100 for ease of figuring, my perfect GFR would be 87. But it’s not. It’s 55, so we know I have CKD, stage 3A just like this reader.

Nuts! I’m going on and on as if everyone reading this knew both what GFR is and the stages of CKD. Well, we’ll just correct that right now. According to MedlinePlus, 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/007305.htm.

Glomerular filtration rate

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

How the Test is Performed

blood sample is needed.

The blood sample is sent to a lab. There, the creatinine level in the blood sample is tested. Creatinine is a chemical waste product of creatine. Creatine is a chemical the body makes to supply energy, mainly to muscles.

The lab specialist combines your creatinine level with several other factors to estimate your GFR. Different formulas are used for adults and children. The formula includes some or all of the following:

  • Age
  • Blood creatinine measurement
  • Ethnicity
  • Gender
  • Height
  • Weight”

Nor do we know the reader’s ethnicity. The National Kidney Foundation at https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf explains why this is important:

“This is due to higher average muscle mass and creatinine generation rate in African Americans.”

So, why then, is it important to know if you’re only in stage 2 of CKD? Let me put it this way:

When I was first diagnosed with CKD, I was at a GFR of 39. That’s pretty low. Had I been tested earlier, I would have had more time to preserve more of my kidney function. While I’m now at about 55 GFR (just like my reader), it took years and years of hard work as far as diet, exercise, rest, sleep, avoiding anxiety, not drinking or smoking and making sure I paid special attention to my labs.

Imagine if I had known earlier that I had CKD. I could have started protecting my kidneys earlier, which may have meant I could avoid dialysis for longer… or maybe at all. It may have meant I wouldn’t reach the place where I needed a transplant, if I ever needed one.

If you are routinely checked via a blood test and urine test each time you see your family doctor – just like your heart and lungs are checked – you may be able to avoid being told you were in need of dialysis seemingly out of the blue. But you wouldn’t know to ask for these tests unless everyone is made aware of CKD and just how prevalent it is. Think about it.

Until next week,

Keep living your life!

Now That’s Patience.

This is decidedly the month for blogs based upon reader questions. As usual, I first must remind you that I am not a doctor and you need to speak with yours before you take any action. As you know, I had major surgery in September to remove a pancreatic cancer tumor which included removing part of the pancreas, the gall bladder, and the spleen. Since then I’ve been hospitalized twice for complications of this surgery… and this particular reader has waited all this time for answers to her questions. I’m impressed.

Let’s not make her wait one second longer. She is a woman in her 40s who has questions about Chronic Kidney Disease and the menstrual period. Hey, guys, don’t go anywhere. Read today’s blog and you just might be able to offer some insight to your female CKD patient friends who have similar questions.

It seems her period went on and on… for two weeks. Her doctor (not a nephrologist) ordered medications for her, but she wasn’t sure if they were safe for her kidneys. In her country, you cannot simply make an appointment or call your nephrologist. You need to wait, and wait, and wait until you are given an appointment. Of course, her first course of these medications is now long over, but perhaps we can help her if she’s ever in this situation again… or if you are.

The first medication prescribed was Traxan. Don’t worry if that doesn’t ring a bell; I’d never heard of any of these medications before either. According to Drugs.com at https://www.drugs.com/international/traxan.html,

Traxan

Traxan may be available in the countries listed below.

Ingredient matches for Traxan

Tranexamic Acid

Tranexamic Acid is reported as an ingredient of Traxan in the following countries:

  • Philippines”

which makes sense since this particular reader is from the Philippines. This doesn’t tell us much, so let’s try Tranexamic Acid.

WebMD at https://www.webmd.com/drugs/2/drug-32677-1331/tranexamic-acid-oral/tranexamic-acid-650-milligram-tablet-oral/details offers the following information:

“This medication is used to treat heavy bleeding during your menstrual period. Tranexamic acid works by slowing the breakdown of blood clots, which helps to prevent prolonged bleeding. It belongs to a class of drugs known as antifibrinolytics.

Tranexamic acid is not a hormone. It does not treat other menstrual or premenstrual symptoms. It does not stop your period. It is not a form of birth control and does not protect against sexually transmitted diseases.”

And now the biggie: Is this safe if you have CKD? There is not much research on this other than a study with a very small population of only four patients. They did suffer adverse reactions, but three were on dialysis and the fourth had a transplant. The take away from over an hour’s search is that the dosage may have to be modified.

Mefenamic Acid was the second drug prescribed. By the way, the brand name for this drug is Ponstel.

“Mefenamic acid is used to relieve mild to moderate pain, including menstrual pain (pain that happens before or during a menstrual period). Mefenamic acid is in a class of medications called NSAIDs. It works by stopping the body’s production of a substance that causes pain, fever, and inflammation.”

This information was offered by 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/druginfo/meds/a681028.html.

Houston, we have a problem. NSAIDS are something all kidney patients should avoid. I was delighted to happen upon the Curbsiders (a board-certified internists’ group) at https://thecurbsiders.com/podcast/146-nephmadness-pain-meds-in-chronic-kidney-disease who explained the NSAID problem in terms I (and hopefully you) can understand:

NSAIDs in CKD

Mechanism

  • NSAIDs work by inhibiting cyclooxygenase (COX) and thus decreasing prostaglandin synthesis. This reduces the inflammation causing pain.
  • Renal blood flow, particularly in CKD, often depends on prostaglandins and can decrease with NSAID use.
  • Heart failure, cirrhosis, nephrotic syndrome have low effective renal blood flow which relies on prostaglandins. In these patients, NSAIDs may decrease the eGFR.
  • When close to ESRD, you run the risk that a transient decrease in blood flow may still cause an issue…possibly knocking patients onto dialysis.
  • If a patient is already on dialysis and anuric, the adverse effects of NSAIDs are less significant. For those patients still making urine, there are still renal risks.”

Well, what about Mefenamic acid and CKD? Healthline (I simply cannot stop thanking you for those two best kidney disease blog awards!) at https://www.healthline.com/health/mefenamic-acid-oral-capsule#dosage makes no bones about it:

For people with kidney problems: If you have kidney disease, your body might not be able to clear out this drug as well as it should. This may cause increased amounts of mefenamic acid in your blood and increase your risk of side effects. Your doctor may prescribe a decreased dosage.”

Hopefully, a decreased dosage was prescribed.

And, finally, Marvelon. Forgive me, but I instantly thought of Marvel Comics. Actually, Marvelon is birth control. Oh, I wonder if my reader knew that and wanted birth control. Is it safe for CKD patients? Let’s find out together.

“Do not take this medication if you:

  • have diabetes with blood vessel complications (e.g., heart disease, eye disease, kidney disease, foot infections)
  • have very high cholesterol or triglyceride levels”

These are only two of the eighteen warnings I found on MedBroadcast at https://medbroadcast.com/drug/getdrug/marvelon This is a new site for me, so let me share what they have to say about themselves:

“Condition and disease information is written and/or reviewed by the MediResource Clinical Team. The contents of this site are for informational purposes only and are meant to be discussed with your physician or other qualified health care professional before being acted on. Never disregard any advice given to you by your doctor or other qualified health care professional. Always seek the advice of a physician or other licensed health care professional regarding any questions you have about your medical condition(s) and treatment(s).

This site is not a substitute for medical advice. © 1996 – 2020”

Thank you for being so patient, Philippine reader. Remember, talk to your doctor before doing anything.

Until next week,

Keep living your life!

Belly Fluid Retention While Taking a Diuretic?

Finally, we get to the question one reader has been waiting to be answered for several months while I dealt with complications from pancreatic cancer surgery. Thank you for your patience. The question has to do with reducing belly fluid retention that seems to be the result of taking the diuretic ethacrynic acid for over two years.

What is ethacrynic acid used for? I don’t know. Let’s find out together. CardioSmart of the American College of Cardiology at https://www.cardiosmart.org/Healthwise/d006/49/d00649 tells us that ethacrynic acid is,

“… a loop diuretic (water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine.”

I get what a diuretic is, but what’s a loop diuretic? Let’s go to Wikipedia at https://en.wikipedia.org/wiki/Loop_diuretic for this one, but keep in mind that anyone – medical personnel or not – can edit an entry on this site.

Loop diuretics are diuretics that act at the ascending limb of the loop of Henle in the kidney. They are primarily used in medicine to treat hypertension and edema often due to congestive heart failure or chronic kidney disease. While thiazide diuretics are more effective in patients with normal kidney function, loop diuretics are more effective in patients with impaired kidney function.”

I see. So, as kidney disease patients we are offered loop diuretics instead of thiazide diuretic. The loop diuretic is to prevent too much salt absorption. And we need to limit our salt absorption as CKD patients because???

Thank you to DaVita Kidney Care at https://www.davita.com/diet-nutrition/articles/basics/sodium-and-chronic-kidney-disease for the following:

“… too much sodium can be harmful for people with kidney disease because your kidneys cannot eliminate excess sodium and fluid from your body. As sodium and fluid buildup in your tissues and bloodstream, your blood pressure increases and you feel uncomfortable.

High blood pressure can cause more damage to unhealthy kidneys. This damage further reduces kidney function, resulting in even more fluid and waste build up in the body.

Other sodium-related complications are:

  • Edema: swelling in your legs, hands and face
  • Heart failure: excess fluid in the bloodstream can overwork your heart making it enlarged and weak
  • Shortness of breath: fluid can build up in the lungs, making it difficult to breathe”

Now it makes sense that you don’t want to absorb too much salt if you’re a Chronic Kidney Disease patient.

Wait a minute. If a diuretic is a water pill, why is this reader retaining most of her fluid in her belly. Shouldn’t it be passing out of her body in her urine? I found this explanation on Livestrong at https://www.livestrong.com/article/498477-retaining-fluid-while-taking-diuretics/ :

“In some cases, fluid retention will not respond well to diuretic therapy. Diuretics are not an effective treatment for a type of fluid retention known as idiopathic cyclic edema. In fact, taking diuretics for this condition can make the retention worse. It is not known what causes this condition, but it is associated with hypothyroidism, obesity and diabetes mellitus. This condition often occurs before menstruation and is more common in young women.”

I did see a picture of this reader and didn’t see any signs of obesity, but do not know if she is dealing with diabetes mellitus or hypothyroidism. I’m so sorry, dear reader, but it looks like I’ve hit the same dead end you have in asking your doctors for help.

Change of subject. It’s a new year and the kidney world is reacting to that. For instance, KidneyX, stage 2 is now in effect.

Redesign Dialysis Phase II

Building off the success of KidneyX’s inaugural prize competition, Redesign Dialysis Phase I, Phase II challenges participants to build and test prototype solutions, or components of solutions, that can replicate normal kidney functions or improve dialysis access. Up to 3 winners will each be awarded $500,000.

Submissions are due by 5:00 ET on January 31, 2020.

Who Can Participate?

You can submit a solution even if you did not submit anything in Phase I. Full eligibility rules can be found on page 6 of the prize announcement.

What is KidneyX Looking for in Redesign Dialysis, Phase II?

We are seeking prototype solutions that address any of these categories:

  • Blood Filtration (filtering blood to remove waste and excess fluid)
  • Electrolyte Homeostasis (maintaining appropriate levels of key minerals in the blood)
  • Volume Regulation (regulating the amount of and/or removing excess fluid).
  • Toxin Removal and Secretion (removing, limiting or preventing toxins in the bloodstream).
  • Filtrate Drainage and Connectivity (removing excess filtrate after processing; connectivity issues for filtration, processing, and exterior drainage)
  • Dialysis Access (vascular, peritoneal, blood circuit, or alternative (e.g., GI tract) access)

Specific technical design targets for each category can be found on page 4 of the prize announcement. These design targets, as well as the categories themselves, were developed based on the Kidney Health Initiative’s Technology Roadmap for Innovative Approaches to Renal Replacement Therapy, which is an excellent resource to learn more about technical and scientific needs in this space.

Tests of the prototype’s function or performance should demonstrate rigor, reproducibility, and statistical analysis.

For specific judging criteria, please review the prize announcement.

You can learn more at https://www.kidneyx.org/prizecompetitions/RedesignDialysisPhaseII.

The American Association of Kidney Patients is also looking for participants.

AAKP is pleased to announce an opportunity for individuals with chronic kidney disease, and their caregivers, to participate in a research survey that will help us better understand the impact chronic kidney disease has had on their lives.

To find out whether you qualify, please click on the box below that corresponds with the survey that is most appropriate for you, and complete the brief screening questionnaire. If eligible, you will be directed to the full survey which is expected to take about 15-to-20 minutes to complete. Kindly note, the survey must be completed in one sitting so it is important to start the survey at a time when you feel confident you can allocate enough time to complete the survey in its entirety.

As a show of appreciation for your time and input, participants who complete

the full survey will receive a check for $35!

You can read more about this at https://survey-d.dynata.com/survey/selfserve/53b/1912660?CT=1#?

Until next week,

Keep living your life!

Auld Lang Syne Already?

It’s the last few days of 2019 and this year has whizzed by. My dance with pancreatic cancer has been a trip I could have done without, but the birth of my grandson more than made up for it. Now I get to see him all the time and I only have one more regiment of chemotherapy to go.

Oh, there I go again assuming everyone knows what Auld Lange Syne is. According to Classic FM at https://www.classicfm.com/discover-music/auld-lang-syne-lyrics-and-origins/:

What does ‘Auld Lang Syne’ mean?

The most accurate plain English interpretation of the Auld Lang Syne’s famous title is ‘Old long since’, or ‘For the sake of old times’.

The song itself is reflective in nature, and is basically about two friends catching up over a drink or two, their friendship having been long and occasionally distant.

The words were written by Scottish poet Robert Burns in 1788, but Burns himself revealed at the time of composing it that he had collected the words after listening to the verse of an old man on his travels, claiming that his version of ‘Auld Lang Syne’ marked the first time it had been formally written down.

However, an earlier ballad by James Watson, named ‘Old Long Syne’, dates as far back as 1711, and use of the title phrase can be found in poems from as early as the 17th century, specifically works by Robert Ayton and Allan Ramsay.”

The song is usually sung at the stroke of midnight on New Year’s Eve and is closely associated with the ending of one year and the beginning of the next. That’s tomorrow night.

Before we leave 2019, let’s take a look at what’s been happening in the kidney world this year.

The ball got rolling, so to speak, with this announcement:

“The Advancing American Kidney Health initiative, announced on July 10, 2019 by the US Department of Health and Human Services (HHS), places the kidney community in the national spotlight for the first time in decades and outlines a national strategy for kidney diseases for the first time …. In order to achieve the Advancing American Kidney Health initiative’s lofty goals and make good on the KHI’s commitment to people with kidney diseases, drug and device innovation needs to accelerate.”

You can read the entire announcement from the Clinical Journal of the American Society of Nephrology at https://cjasn.asnjournals.org/content/early/2019/12/05/CJN.11060919.

The American Kidney Fund at https://www.kidneyfund.org/advocacy-blog/future-of-dialysis-innovation.html announced prizes for innovations in dialysis. We are now in phase two.

“HHS and ASN collaborated with patients, nephrologists, researchers and others in planning the competition. Several agencies, including the National Institutes of Health, the Food and Drug Administration, and the Centers for Medicare & Medicaid Services, are involved in this effort. AKF has provided comments to the KidneyX project, urging a focus on unmet needs and improving patient quality of life.

The KidneyX: Redesign Dialysis competition will have two phases. During phase one (late-October 2018-February 2019), innovators will be asked to come up with ideas to ‘replicate normal kidney functions and improve patient quality of life.’ During phase two (April 2019-January 2020), innovators will be asked to develop prototypes to test their ideas.

The HHS press release detailing the competition can be found here.

You can also read my blog about KidneyX by using the topic dropdown on the right side of the blog.

S.1676/H.R 3912 was passed this year, too. According to Renal Support Network at https://www.rsnhope.org/kidney-disease-advocacy/the-chronic-kidney-disease-improvement-in-research-and-treatment-act-of-2019-s-1676/, this is what the act provides:

“Specifically, the legislation does the following:

  • Medigap available to all ESRD Medicare beneficiaries, regardless of age.
  • Improve care coordination for people on dialysis by requiring hospitals to provide an individual’s health and treatment information to their renal dialysis facility upon their discharge. The individual or dialysis facility may initiate the request.
  • Increase awareness, expand preventative services, and improve coordination of the Medicare Kidney Disease Education program by allowing dialysis facilities to provide kidney disease education service. And it will allow physician assistants, nurse practitioners, and clinical nurse specialists, in addition to physicians, to refer patients to the program. And additionally, provide access to these services to Medicare beneficiaries with Stage 5 (CKD) not yet on dialysis.
  • Incentivize innovation for cutting-edge new drugs, biologicals, devices, and other technologies by maintaining an economically stable dialysis infrastructure. The Secretary would be required to establish a process for identifying and determining appropriate payment amounts for incorporating new devices and technologies into the bundle.
  • Improve the accuracy and transparency of ESRD Quality Programs so patients can make better decisions about their care providers.
  • Improve patient understanding of palliative care usage as well as access to palliative care services in underserved areas.
  • Allow individuals with kidney failure to retain access to private insurance plans as their primary payor for 42 months, allowing people to keep their private plans longer.”

I scooted over to EurekAlert! at https://www.eurekalert.org/pub_releases/2019-04/uoo-bkd041219.php when I realized they were announcing a drug I’d blogged about:

“’A drug like canagliflozin that improves both cardiovascular and renal outcomes has been eagerly sought by both patients with Type 2 diabetes and clinicians caring for them,’ added Kenneth Mahaffey, MD, professor of medicine at the Stanford University School of Medicine and co-principal investigator of the trial. ‘Now, patients with diabetes have a promising option to guard against one of the most severe risks of their condition.’

The researchers found the drug canagliflozin, a sodium glucose transporter 2 (SGLT2) inhibitor, was less effective at lowering blood sugar in people with reduced kidney function but still led to less kidney failure, heart failure and cardiovascular events such as heart attacks, strokes and death from cardiovascular disease.

Professor Perkovic said the results were impressive. ‘The substantial benefit on kidney failure despite limited effects on blood glucose suggest that these drugs work in a number of different ways beyond their effects on blood sugar. This is an area of intense ongoing research.’”

These are just a few of the innovations in kidney disease in 2019. I hope to see many more for us – like the FDA approval of the artificial kidney – in 2020.

Until next year,

Keep living your life!

Is it Blood Sugar or the Pancreas?

We all know diabetes raises your risk of developing Chronic Kidney Disease. But why? What’s the mechanism behind the fact? As far as I’m concerned, it’s time to find out.

Let’s start with diabetes. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), which in turn is part of The U.S. Department of Health and Human Services at https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes offers this explanation.

“Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Blood glucose is your main source of energy and comes from the food you eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes your body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in your blood and doesn’t reach your cells.

Over time, having too much glucose in your blood can cause health problems. Although diabetes has no cure, you can take steps to manage your diabetes and stay healthy.

Sometimes people call diabetes ‘a touch of sugar’ or ‘borderline diabetes.’”

Having just had a tumor removed from my pancreas, I’m well aware that it produces insulin as well as digestive enzymes. Without a pancreas to produce insulin, you would need insulin injections several times a day.

I got what diabetes is, but how it causes CKD was still not clear.

Well, not until I read the following from The American Diabetes Association at https://www.diabetes.org/diabetes/complications/kidney-disease-nephropathy.

“When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).”

Hmmm, now that we know what diabetes is and how it can cause CKD, maybe we need to look at ways to attempt to avoid diabetes.

  • Losing weight and keeping it off. Weight control is an important part of diabetes prevention. You may be able to prevent or delay diabetes by losing 5 to 10 percent of your current weight. For example, if you weigh 200 pounds, your goal would be to lose between 10 to 20 pounds. And once you lose the weight, it is important that you don’t gain it back.
  • Following a healthy eating plan. It is important to reduce the amount of calories you eat and drink each day, so you can lose weight and keep it off. To do that, your diet should include smaller portions and less fat and sugar. You should also eat a variety of foods from each food group, including plenty of whole grains, fruits, and vegetables. It’s also a good idea to limit red meat, and avoid processed meats.
  • Get regular exercise. Exercise has many health benefits, including helping you to lose weight and lower your blood sugar levels. These both lower your risk of type 2 diabetes. Try to get at least 30 minutes of physical activity 5 days a week. If you have not been active, talk with your health care professional to figure out which types of exercise are best for you. You can start slowly and work up to your goal.
  • Don’t smoke. Smoking can contribute to insulin resistance, which can lead to type 2 diabetes. If you already smoke, try to quit.
  • Talk to your health care provider to see whether there is anything else you can do to delay or to prevent type 2 diabetes. If you are at high risk, your provider may suggest that you take one of a few types of diabetes medicines.”

This is a list from NIH: National Institute of Diabetes and Digestive and Kidney Diseases posted on MedLinePlus at https://medlineplus.gov/howtopreventdiabetes.html. Notice it’s mentioned that this is for type 2 diabetes.

There are 11 different kinds of diabetes. Types 1 and 2 are the most common. WebMD at https://www.webmd.com/diabetes/guide/types-of-diabetes-mellitus#1 explains what type 1 and 2 are.

Type 1 diabetes is an autoimmune condition. It’s caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas doesn’t make insulin…. With Type 2 diabetes, the pancreas usually produces some insulin. But either the amount produced is not enough for the body’s needs, or the body’s cells are resistant to it. Insulin resistance, or lack of sensitivity to insulin, happens primarily in fat, liver, and muscle cells.”

This is all starting to make sense.

Until next week,

Keep living your life!

Zap!

To my surprise, hair started growing back in unexpected places after I finished chemotherapy. One place was my face. My face! And quite a bit of it, more than a bearded person would have. At least, that’s how it looked to me. I was surprised no one mentioned it to me, but supposed they were just glad I was still alive. I wasn’t worried. I’d just use laser hair removal… or would I? I do have Chronic Kidney Disease.

What did that mean as far as the laser hair removal? I remembered from when I’d had it done on the mustache area about seventeen years ago that it doesn’t work on white hair. No problem with this currently. This facial hair was growing in black and thick.

My goodness, you’d think I’d just be thankful to be alive at this point, too. But as is often attributed to Mr. Shakespeare, “Vanity, thy name is woman.” (Actually, he wrote “Frailty, thy name is woman,” but no one seems to remember that.) So, time to explore what CKD limits there are with laser hair removal.

Let’s start at the beginning with what it is. WebMD at https://www.webmd.com/beauty/laser-hair-removal#1  explained it this way:

“Laser hair removal is one of the most commonly done cosmetic procedures in the U.S. It beams highly concentrated light into hair follicles. Pigment in the follicles absorb the light. That destroys the hair.”

Just in case you need reminders,

“A hair follicle is a tunnel-shaped structure in the epidermis (outer layer) of the skin. Hair starts growing at the bottom of a hair follicle. The root of the hair is made up of protein cells and is nourished by blood from nearby blood vessels.

As more cells are created, the hair grows out of the skin and reaches the surface. Sebaceous glands near the hair follicles produce oil, which nourishes the hair and skin.”

Thank you to Healthline at https://www.healthline.com/health/hair-follicle#anatomy for that information. Notice I specified hair follicles since there are other kinds of follicles.

What else might we need defined. Oh yes, pigment. I used the definition of pigmentation instead since it was less convoluted to my way of thinking. The ‘ation’ part just means the action or process of whatever we’re discussing – in this case pigment. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=9681  tells us it’s:

“The coloring of the skin, hair, mucous membranes, and retina of the eye. Pigmentation is due to the deposition of the pigment melanin, which is produced by specialized cells called melanocytes.”

Now, the limitations with CKD – if any. In the last 17 years, I’ve learned that not only wouldn’t white hair respond to laser hair removal, but gray and blonde won’t either. It will also be less effective on red hair. It all has to do with your melanin.

Whoa! This was unexpected. I not only did NOT find any research warning about CKD and laser hair removal, but found some that endorsed it. For instance, The National Center for Biotechnology Information (NCBI), which is part of the U.S. National Library of Medicine, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pubmed/30005102.

“Laser hair reduction is a well-established modality for a wide range of medical indications. Laser hair reduction can be beneficial for hemodialysis patients who undergo repeated adhesive tape application and removal at their hemodialysis site during hemodialysis sessions. There is a paucity of published literature on efficacious laser hair removal treatments for hemodialysis patients. Herein, we present a case of a 50-year-old male (Fitzpatrick III) with end-stage renal disease on hemodialysis, who achieved successful laser hair reduction at his hemodialysis vascular access site with five sessions of a neodymium:yttrium-aluminium-garnet (Nd:YAG) laser (1064 nm) to improve his quality of life by reducing the hair burden at the adhesive tape site application. We recommend providing this safe and effective hair reduction treatment option for hemodialysis patients given the decreased quality of life associated with end stage renal disease and hemodialysis. J Drugs Dermatol. 2018;17(7):794-795.”

Let me translate the medicalese. This abstract means that using laser hair removal around the patient’s access site for dialysis made his life easier (and less painful) since the tape wasn’t sticking to his arm hair anymore. We all know how painful taking off adhesive anything can be if body hair is involved.

I have dug around in my computer for hours and hours. That’s all I found about laser hair removal and Chronic Kidney Disease. That’s the great thing about keeping an open mind; you find some unexpected information.

Here’s hoping you had a fun Halloween and didn’t eat too much candy, especially if you’re diabetic.

Talking about food, are you aware of Mrs. Dash’s seasonings for use instead of salt? It’s come to the point where I can taste even a teeny bit of salt. After almost a decade of not using salt, I’ve lost my taste for it… but Mrs. Dash? How does lemon pepper seasoning sound to you? Or garlic and herb? There are about 28 different flavors of seasoning. Go to the website at https://www.mrsdash.com/ to see for yourself. They also make marinades which was news to me. I usually choose the less spicy seasonings, but they have some zingers that you spicy food loving CKD patients will probably enjoy more.

Until next week,

Keep living your life!

 

Gee, That Smells Nice

Decades ago, when I was a newlywed and still in college, we lived on East 90th Street in New York City. The neighborhood was old; the building was old. It was old enough to have that odor, the one New Yorkers are still arguing about. One group says it’s dead rats in the walls; the other says it’s feline urine that’s built up over the years. It was pretty rank.

At that time, I was a wannabe hippie, so I did what all the wannabe hippies did. I lit incense. It was powerful and it smelled nice. Opening the windows wasn’t a helpful option since this was a dumb belle apartment and people had been throwing garbage out the windows and down into the little airspace the shape of the apartment created for over a hundred years.

They’d been throwing it out the back windows, too. Nobody wanted to walk their garbage down the five flights from where I lived. What about the front windows, you ask. If you didn’t mind car exhaust smoke or the shrills of children playing in the street, that would have been okay. I liked the sound of the children, but it didn’t help me study.

We finally figured out this was not the best place for us to live, so we moved to an apartment in Forest Hills, a neighborhood in Queens. It smelled nice there. Our three windows opened on to a courtyard belonging to the apartment building behind us. There were trees and bushes galore. But we still lit incense. By this time, my then husband was a wannabe hippie right along with me.

I moved a lot in those years: New Rochelle in Westchester, Park Slope in Brooklyn, and Stapleton Heights in Staten Island. In each new home, I lit incense more from habit than anything else.

Finally, I moved to Arizona and kept all ten windows in my home open throughout the fall, winter, and spring. But in the summer with its extreme heat, they had to be closed…. So what did I do? That’s right; I burned incense. Never once did I consider this might be some sort of health hazard.

Now I have pancreatic cancer which I know is caused by the ATM gene and, in my case, is hereditary (Stop laughing, please. That really is the name of the gene.) But I also have Chronic Kidney Disease. I got to wondering if there’s any connection between the incense burning and the fact that I have CKD. So, I decided to explore that possibility.

But first, let me tell those who may not know just what incense is. Dictionary.com at https://www.dictionary.com/browse/incense has a nice, easy definition:

  1. “an aromatic gum or other substance producing a sweet odor when burned, used in religious ceremonies, to enhance a mood, etc.
  2. the perfume or smoke arising from such a substance when burned.
  3. any pleasant perfume or fragrance.”

I popped over to The National Center for Biotechnology Information (NCBI), which is part of the
US National Library of Medicine
, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325774/. Why? Because I remembered reading something about incense on this site. I know, I know. I freely admit I have weird reading habits, but remember: I’m retired. I can indulge in anything that catches my fancy now… including reading weird, seemingly random articles. Anyway, this is what I learned from this study of daily incense burning by Chinese CKD patients in Singapore.

“Our study provides epidemiological evidence that long-term exposure to domestic incense smoke may contribute to the risk of ESRD in the general populations. We acknowledge the lack of information on kidney function at baseline as a limitation in our study, and recommend that the findings be corroborated by future studies that can demonstrate the deterioration in kidney function with time in incense users. Given the worldwide prevalence of incense burning, our finding has substantial public health implications. We advocate implementing strategies to reduce exposure to the emissions from domestic incense and educating the public about the importance of improving ventilation with the use of incense.”

This is no surprise if you’re thinking logically, but then again, who thinks about incense? Although I’ll bet you’ll be doing a little bit more thinking about it now. There are some problems here, though.

  1. I’m not Chinese.
  2. I don’t live in Singapore.
  3. I don’t burn incense on a daily basis.

Hmmm, let’s see if I can find anything else. While not specific to CKD, Healthline at https://www.healthline.com/health/is-incense-bad-for-you#bottom-line did have concerns.

“Incense has been used for thousands of years with many benefits. However, studies are showing incense can possibly pose dangers to health.

Incense isn’t officially deemed a major public health risk comparable to smoking tobacco. Correct use to minimize risks hasn’t yet been explored. Neither has the extent of its dangers been explored, since studies thus far are limited.

Reducing or limiting incense use and your exposure to the smoke may help lower your risk. Opening windows during or after use is one way to reduce exposure.

Otherwise, you can explore alternatives to incense if you’re concerned about the risks.”

I intend to open the windows the next time I use incense to cover that darned chemo smell I’m still emitting. Consider opening the windows the next time you choose to use incense, if you do.

Time for a little gratitude here. You know I’ve been dealing with pancreatic cancer since last March. During this time period, I’ve been invited to present at a conference in Tokyo, participate in both a radio show and a newspaper article, and be a member of a think tank in New Jersey. To be honest, I hadn’t realized how much physical energy I put into my CKD awareness outreach. While I had to answer, “Not this year. Please keep me in mind for next year,” I am thankful for these opportunities.

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!

re·​ha·​bil·​i·​ta·​tion 

What! As if staying in the hospital for six to thirteen days weren’t enough, it turned out that I would be in a rehabilitation center for an additional six to eight weeks. Again, while this was for pancreatic cancer, many Chronic Kidney Disease patients who have had surgery may require a stay in such places, too. I look for new experiences, but not this kind.

human-438430Let’s go to my favorite dictionary, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/rehabilitation for the definition of the word.

“: to bring (someone or something) back to a normal, healthy condition after an illness, injury, drug problem, etc.

b: to teach (a criminal in prison) to live a normal and productive life

c: to bring (someone or something) back to a good condition”

I hope it’s clear that it’s the first definition we’re dealing with today.

Forgive me for being dense, but I still didn’t get how that’s going to be done. So I searched for help and MedlinePlus, which is part of the U.S. National Library of Congress which, in turn, is part of the National Health Institutes, at https://medlineplus.gov/rehabilitation.html did just that.

What happens in a rehabilitation program?a.d.

When you get rehabilitation, you often have a team of different health care providers helping you. They will work with you to figure out your needs, goals, and treatment plan. The types of treatments that may be in a treatment plan include

  • Assistive devices, which are tools, equipment, and products that help people with disabilities move and function
  • Cognitive rehabilitation therapy to help you relearn or improve skills such as thinking, learning, memory, planning, and decision making
  • Mental health counseling
  • Music or art therapy to help you express your feelings, improve your thinking, and develop social connections
  • Nutritional counseling
  • Occupational therapy to help you with your daily activities
  • Physical therapy to help your strength, mobility, and fitness
  • Recreational therapy to improve your emotional well-being through arts and crafts, games, relaxation training, and animal-assisted therapy
  • Speech-language therapy to help with speaking, understanding, reading, writing and swallowing
  • Treatment for pain
  • Vocational rehabilitation to help you build skills for going to school or working at a job

Depending on your needs, you may have rehabilitation in the providers’ offices, a hospital, or an inpatient rehabilitation center. In some cases, a provider may come to your home. If you get care in your home, you will need to have family members or friends who can come and help with your rehabilitation.”

Personally, I won’t need some of these such as cognitive rehabilitation, speech-language therapy, and vocational rehabilitation. Brain and speaking aren’t involved in pancreatic surgery and I’m retired. You may be in the same situation if you have rehabilitation or you may not. It’s a list that’s made unique for each patient. I’ve got to remind you here that I’m not a doctor; this is a lay person giving her opinion.

IMG_1843(Edited)

Hmmm, it seemed pretty clear that each type of surgery requires its own sort of rehabilitation. Now that we know what’s involved, let’s see who would be involved if you required rehabilitation after a surgery. WebMD at https://www.webmd.com/healthy-aging/rehab-after-surgery#1 offered a succinct, easy to understand answer.

Who Works With You

Different experts help with different parts of your rehab. Some people who might be on your team:

Physiatrist. He’s a doctor who specializes in rehab. He tailors a plan to your needs and oversees the program to make sure it’s going well.

Physical therapist. He teaches you exercises to improve your strength and the range you have when you move your arm, leg, or whatever part of your body had the operation.

Occupational therapist. He helps you regain the skills you need for some basic activities in your everyday life. He might teach you how to cook meals, get dressed, shower or take a bath, and use the toilet. He’ll also show you how to use gadgets that can help you care for yourself more easily, such as a dressing stick or elastic shoelaces. Some occupational therapists will visit your home to make sure it’s safe and easy for you to get around.

Dietitian. He’ll help you plan healthy meals. If your doctor has told you to avoid salt, sugar, or certain foods after your surgery, the dietitian can help you find other choices.

Speech therapist. He helps with skills like talking, swallowing, and memory. Speech therapy can be helpful after surgery that affects your brain.

Nurses. They care for you if you’re staying for a few weeks or months in a rehab center. They may also come to your home to help track your recovery and help you with the transition to life back at home.

Psychologist or counselor. It’s natural to feel stressed out or depressed after your surgery. A mental health professional can help you manage your worries and treat any depression.

It can take many months to recover from an operation, but be patient. A lot depends on your overall health and the kind of procedure you had. Work closely with your rehab team and follow their instructions. Your hard work will pay off.”

Looking over the list, I won’t need a speech therapist and neither would you if you have some kind of kidney related surgery. I’m not so sure about a psychologist or counselor, either. I’m sort of thinking that going through chemotherapy and radiation treatments without one, I won’t need one after surgery. Then again, I’ve never had major surgery before and I’ve been told this is major major surgery. However, should I find myself in a position where my medical team and/or I feel I need counseling, I would not hesitate to ask for it… just as I’ve asked for help with the cancer.ot

Rehabilitation offers so much. I had no idea this was available until my surgeon told me about it. Nor did I know that Medicare will pay for it… sort of. This is from Medicare at https://www.medicare.gov/coverage/inpatient-rehabilitation-care.

 

“You pay this for each benefit period:

  • Days 1-60: $1,364 deductible.*
  • Days 61-90: $341 coinsurance each day.
  • Days 91 and beyond: $682 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime).
  • Each day after the lifetime reserve days: all costs.

*You don’t have to pay a deductible for care you get in the inpatient rehabilitation facility if you were already charged a deductible for care you got in a prior hospitalization within the same benefit period. This is because your benefit period starts on day one of your prior hospital stay, and that stay counts towards your deductible.”

Excuse me while I go check my bank account.

Until next week,

Keep living your life!

You’re Bringing What?

I have stayed overnight in the hospital three times in my life: once for a concussion, of which I don’t remember anything (No surprise there.), and twice for the birth of each of my daughters, of which I only remember the actual births. I’m facing a six to thirteen day stay towards the end of the month… and I just don’t know what to bring or why. While it’s not a kidney related stay, as Chronic Kidney Disease patients we all know CKD patients may need to stay in the hospital, too, for transplants,  kidney cancer, or other reasons.

I got a call from the surgeon’s office today. They were able to explain what to bring on the day of surgery: nothing. It seems there are no lockers to hold valuables while you’re in surgery. While I took a breath to contemplate life without my phone and/or iPad, it was explained that I would probably be sleeping until the next day, anyway. I didn’t know that. Hmmm, maybe I’ll just bring a book – a real book – for that first day… just in case I wake up. I can bring a paperback so I won’t care if it’s ‘mislaid.’ Or can I?

All right, enough guessing. Let’s do some researching here. This is from MedicineNet at https://www.medicinenet.com/hospital_10_tips_packing_for_a_hospital_stay/views.htm:

  1. Documents and paperwork. Ideally, you should bring all the necessary paperwork in one folder, preferably the kind with a tie or snap closure to guarantee that important documents will not be lost. Don’t forget insurance cards, a list of all the medications you are currently taking, and a list of telephone numbers of family and friends. If you have a written power of attorney or living will, always bring those along with you too.
  2. A small amount of money for newspapers, vending machines, and such. Bringing credit cards or large amounts of cash is not recommended, since theft can occur in hospitals. It is also a good idea to leave all jewelry at home, it is one less thing to worry about losing or being stolen.
  3. Clothing. You may want to bring comfortable pajamas or lounging clothes, if you’ll be able to wear your own clothing. Bring a supply of loose-fitting underwear and comfortable socks …. A cardigan-style sweater or bed jacket can help ward off the chills. Make sure you have slippers to walk around in the hospital and one pair of regular shoes (in case you’re allowed to walk outside, and you’ll need them for the trip home anyway).
  4. Eyeglasses, if you require them.
  5. Writing paper and pen, for making notes or recording questions you want to ask your doctor
  6. A prepaid phone card for calls from your room telephone.
  7. Toiletries. You can bring your toothbrushtoothpaste, lotion, deodorant, soap, shampoo, a comb or hair brush, and other toiletries from home, but avoid perfumes and any highly scented products. Lip balm is also a good addition to your toiletries kit.
  8. Something to occupy your time – Bring books or magazines to help pass the time….
  9. Photos or small personal items. Many people enjoy having a couple of small framed photos or mementos from home to personalize their hospital space.
  10. Finally, check the hospital’s policy about electronic items before you pack your laptop, portable DVD player, MP-3 or CD player, or cell phone. In particular, cell phone use is forbidden in many hospitals since it may interfere with electronic patient monitoring equipment. Don’t forget that high-end electronic items can also be targets for theft – if you are allowed to bring them, make sure that a relative or friend takes them home or that they can be safely stored when you’re sleeping or not in your room.

Now, wait a minute. I get it that MedicineNet may be referring to the day after surgery. But, in my case, that means I prepare a bag and give it to my daughter to bring the next day. The staff at the surgeon’s office did tell me the hospital will provide a toothbrush and toothpaste, but will they allow me to bring the BiPap that I use for sleep apnea or the mouth piece I sleep with to prevent my jaw from locking? Let’s look again.

U.S. News has some of the same items on their list at https://health.usnews.com/health-news/patient-advice/slideshows/11-items-to-pack-in-your-hospital-bag?onepage :

To recap, here are 11 items to pack in your hospital bag.

  • Loose, warm and comfortable clothing.
  • Your own pillow.
  • Your own toiletries.
  • Flip-flops.
  • Earplugs and earphones.
  • Comfort flicks.
  • Escapist books.
  • Laundry lists: of your medications, doctors and family and friends.
  • Pen and paper.
  • Scents.
  • Drugstore supplies.”

They also make a really good point about bringing you own medications and toiletries so you’re not being charged for them by the hospital. I would avoid the scents just because so many people are scent sensitive these days.

 

I was still a bit confused, so I went to my hospital’s website. I learned that not only are cell phones permitted, but Wi-Fi is offered for free. Great. What more can I find out about what to pack, I wondered. My biggest desire was for Shiloh, my comfort dog, to be with me but I knew that wasn’t going to happen.

I thought VeryWellHealth at https://www.verywellhealth.com/what-to-pack-for-the-hospital-3157006 was more realistic about what to pack and I especially appreciated the warnings about electronics:

“You won’t have a lot of space to store things, so try to fit everything you need into a standard roll-on bag. Be sure that is well labeled and is lockable as an extra layer of security.

Among the things you should include on your packing checklist:

  • Personal medications, preferably in their original container so that the nurse can find them for you if you are unable to reach them
  • A list of your current medications to add to your hospital chart, including names, dosages, and dosing schedule
  • Comfortable pajamas (loose-fitting is best)
  • A light robe for modesty, especially in a shared room
  • Slippers with rubber soles (to prevent slipping)
  • Plenty of socks and underwear
  • Toothbrush, toothpaste, and deodorant
  • Hairbrush or comb
  • Soap, skin care products, and hair care products if you prefer your own (ideally travel size)
  • Special needs products like tampons, sanitary pads, or denture cream
  • Glasses (which may be easier than contacts if you think you’ll be dozing a lot)
  • Outfit to wear home (something loose is best, also make sure it won’t rub on your incision)
  • A cell phone charger for your cell phone
  • Your laptop charger if you intend to bring one
  • Earplugs if you are ​a light sleeper
  • An eyemask if you are used to black-out curtains
  • Entertainment such as books, a portable DVD player, puzzles, or magazines
  • Earbuds or earphones for your P3 or DVD player
  • Non-perishable snacks, especially if you have dietary concerns (such as diabetes or chronic medications that need to be taken with high-fat foods)”

One quick call to the hospital to see if they have any additions to make to these lists and I’m ready to pack. How about you?

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!

 

Adult Toys

In keeping with my promise to myself that August would be answer-readers’-questions month, this week I’ll be writing about the occupational therapy toys a reader asked about. Did you think I meant the other kind of adult toys? Hmmm, maybe it would make sense to know why toys are used in dealing with neuropathy in the first place.

As my occupational therapist explained it, the therapy toys are used to stimulate the nerve endings to bud so that new pathways may be created. I don’t fully understand it, but this is what I wrote in my July 29th blog:

“I have a bag of toys. Each has a different sensory delivery on my hands and feet. For example, there’s a woven metal ring that I run up and down my fingers and toes, then up my arms and legs. I do the same with most of the other toys: a ball with netting over it, another with rubber strings hanging from it. I also have a box of uncooked rice to rub my feet and hands in… and lots of other toys. The idea is to desensitize my hands and feet.”

Ah, but now we know these therapy toys are used for more. Desensitization? Good. Building new pathways for sensations? Better. Yes, I want my hands and feet to stop feeling so tingly all the time, but I also want to be able to feel whatever it is I’m holding or touching. Remember, for me, this was an unexpected side effect of chemotherapy, although it could have just as easily been diabetic peripheral neuropathy. Aha! Now you see why I’ve included this in the blog posts in the first place: Diabetes is the number one cause of Chronic Kidney Disease.

Ready to explore some therapy toys? Well, all rightee. Let’s start with my favorite, the one I call the smoosh ball. Oh, since I bought a bag full of these different therapy toys on Amazon, none were labeled so I made up my own names for them. Hey, I’m a writer. I can get away with that.

This one is soft and rubbery. It’s the “another with rubber strings hanging from it,” mentioned above that I rub on my toes and up my legs, then my fingers and up my arms as I do with most of these therapy toys. It causes the loveliest goose bumps. I’m surprised that Shiloh, our 80 pound dog, doesn’t go after it just for the way it seems to shimmer. I also squeeze the smoosh ball with each hand.

The opposite of the smoosh ball is the steel ring. This one is almost painful if I’m not careful. In addition to using it on my hands, arms, fingers, and toes as I did the smoosh ball, I also use it as a ring on each toe and finger moving it up and down. Notice I’m not mentioning how many repetitions I do for each of the therapy toys. That’s because everyone is different. Your neuropathy may be worse than mine, or – hopefully – not as bad as mine.

The pea pod is the hardest therapy toy for me to use. The idea is to squeeze the pod to cause the peas to pop up one by one. Sounds easy, right? Nope. You need to isolate these fingers you can’t even feel until you get the right ones pressing on the right places to make that little fellow pop out.

The brush is a comforting therapy toy. I wonder if this is why horses like being curried (brushed). It’s a soft, rubber brush which feels almost luxuriant as I rub it up my fingers, arms, toes, and legs. It was also the first therapy toy I was introduced to since the occupational therapist used it during my first treatment.

Then there’s the ball with the netting around it. I do the usual rub the fingers, arms, toes, and legs with it. I also squeeze it like a stress ball. It feels completely different than the smoosh ball and even makes a sort of flatulence sound when I squeeze it. Well, that was unexpected.

I have a small ball that looks like a globe. Maybe that’s because children use these therapy toys, too? All I can figure out to do with this is to squeeze it like a stress ball. I’ll have to remember to ask the occupational therapist if that’s what it’s meant for.

The little beads can defeat me. The idea is to place them in a bowl and then pick them up using your thumb and the different fingers one at a time. At first, I was using my long nails to pick them up. Once I realized what I was doing, I cut my nails. It is surprising to me to realize how weak some of my fingers are as compared to how strong others are.

The mesh has a bead in it. You move it back and forth from one end of the mesh to the other, using each finger plus your thumb individually. Of course, this one feels really good on the toes, legs, fingers, and arms because it’s a soft mesh (but not as soft as the mesh on the net ball).

The snake is a long piece of soft rubber. Before I execute the usual rubbing on the toes, legs, fingers, and arms, I use it the way you use an elastic band for stretching across your chest. It is more flexible than you’d think.

Not part of my bag of tricks – I mean therapy toys – is the foot roller. This is another therapy toy I bought on Amazon after trying one out at an occupational therapy treatment.  Have you ever heard the expression ‘hurts so good?’ That’s what this feels like while you roll it back and forth under your feet. Lest you get me wrong, it does not hurt enough to make you want to stop, just enough to make those tingly feet tingle even more.

I also do stretching exercises for my hands, place my feet in rice, and try to pick up a wash cloth with my toes. It takes a long time to exercise, but I think it’s worth it.

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!

But Why?

As Chronic Kidney Disease patients, we all know that proteinuria is one indication of our disease. Would you like a reminder about what proteinuria is? Here’s one from The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html:

“Healthy kidneys remove extra fluid and waste from your blood, but let proteins and other important nutrients pass through and return to your blood stream. When your kidneys are not working as well as they should, they can let some protein (albumin) escape through their filters, into your urine. When you have protein in your urine, it is called proteinuria (or albuminuria). Having protein in your urine can be a sign of nephrotic syndrome, or an early sign of kidney disease.”

I used to think that’s all it was: an indicator of CKD. That is until my occupational therapist and I got to talking about the edema caused by neuropathy.

Ah! Flash! We did also talk about Havimat which I wrote about last week and I checked on a number of sites to see if it were safe for an active tumor. The consensus of the sites agreed it was safe to use on someone with an active tumor that was being treated as long as it was not used on the location of the tumor itself. I feel better now about having had three sessions with Havimat since the occupational therapist was careful not to use it anywhere near my pancreas – the site of the tumor.

But I digress. Back to the topic at hand: proteinuria. It seems that protein is needed in the body, rather than being excreted in the urine. You guessed it. My question became the topic of today’s blog: But Why?

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.”

Okay, got it that protein is very necessary but what does that have to do with the chemotherapy I had that seemed to cause the proteinuria problem?  After looking at bunches of different sites (Today’s blog is taking a very long time to write.), I gleaned a little hint here and a little hint there until I figured out that certain types of chemotherapy may make proteinuria worse if you already have it, or cause it. Boo for me; I lost on that one since I already had proteinuria.

Well, what about the edema from the neuropathy? Was proteinuria affecting that in some way? Or did I have it backwards and it was the neuropathy that was causing the edema. I went to eMedicineHealth at https://www.emedicinehealth.com/neuropathy/article_em.htm#what_is_neuropathy for some help with this.

“Certain drugs and medications can cause nerve damage. Examples include cancer therapy drugs such as vincristine(Oncovin, Vincasar), and antibiotics such as metronidazole (Flagyl), and isoniazid (Nydrazid, Laniazid).”

This little tidbit is from MedicalNewsToday at https://www.medicalnewstoday.com/articles/323481.php :

“Chemotherapy can damage nerves that affect feeling and movement in the hands and feet. Doctors call this condition chemotherapy-induced peripheral neuropathy (CIPN). Symptoms can be severe and may affect a person’s quality of life.”

By the way, diabetic neuropathy is another form of peripheral neuropathy.

Uh-oh, now what do I do? The HonorHealth Research Institute in Scottsdale, Arizona, where I’m being treated offered both the gabapentin for the pain (which I skipped since I want to try non-drug treatment first) and occupational therapy. Let’s see what that might do for me. Please note that occupational therapy works at reducing the pain of the neuropathy.

I have a bag of toys. Each has a different sensory delivery on my hands and feet. For example, there’s a woven metal ring that I run up and down my fingers and toes, then up my arms and legs. I do the same with most of the other toys: a ball with netting over it, another with rubber strings hanging from it. I also have a box of uncooked rice to rub my feet and hands in… and lots of other toys. The idea is to desensitize my hands and feet.

I was also given physical exercises to do, like raising my fisted hands above my head and straightening out my fist several times.  This is one of many exercises. Do you remember the old TV show, E.R? It takes me slightly longer than one 43 minute episode to complete the exercises.

When I go to see the therapist, she uses the Havimat (electrical stimulation), another machine that sucks the chemo out (no kidding… and it doesn’t hurt either.), and a third that pulses. I am amazed at how the edema disappears when she uses these. But, unfortunately, the effect doesn’t stay very long. Compression socks have helped and, despite their not-so-pleasing appearance are quite comfortable.

Wow! Proteinuria is so much more than just an indication that you may have Chronic Kidney Disease.

Ready for a topic change? The following is part of an email I received from KDIGO (Kidney Disease – Improving Global Outcomes).

“We … invite your comments at any time.  Suggest topics, look for opportunities for KDIGO to implement its work in your area, bring new ideas to us, and help us become more relevant to the lives of patients like you. As a global organization, we seek to continue to develop communication channels to patients throughout the world.  This is difficult to do from one perspective, but if we work together we can build a robust base of individuals and ideas that will help us plan and carry out our mission.

KDIGO doesn’t have any members or local entities to whom we are accountable.  We only are accountable to you, our patients.  Outcomes of your care are our mission.  We can do it better if you work with us and give us your constructive input.

Again, thanks for letting us know you’d like to be a part of this global effort.  Your ideas are welcome and will be taken into account. “

Keep those comments coming, folks. Their email is kdigocommunications@kdigo.org.

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!

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!

Like Life?

A word I hear every few weeks at chemotherapy is Neulasta. I looked it up since I was being given an injection each time I heard the word. I went directly to the manufacturer’s website at https://www.neulasta.com/learn-about-neulasta/ to find out just what it was:

“Neulasta® is a prescription medicine used to help reduce the chance of infection due to a low white blood cell count, in people with certain types of cancer (non-myeloid), who receive anti-cancer medicines (chemotherapy) that can cause fever and low blood cell count.”

But then I needed to define ‘non-myeloid’ for myself. No problem. I called up my old standby The Merriam-Webster Dictionary at https://www.merriam-webster.com/medical/nonmyeloid:

“not being, involving, or affecting bone marrow”

Okay, got it. Neulasta reduces low white blood cell count infection in cancer that doesn’t affect the bone marrow. By the way, this is accomplished by forcing white blood cells – the infection fighting blood cells – to mature quickly.

No sooner did I get that straight in my mind than I started hearing a different word: Udenyca. It turned out that Udenya is a biosimilar for Neulasta. Now we get to the meat of the matter.

Just what is a biosimilar? I took a former English teacher’s stab at the definition and decided it meant ‘like life.’ But does it? The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/biosimilarity helped us out here:

“biosimilar

(bī′ō-sĭm′ə-lər)

adj.

Highly similar in function and effect to an existing biological product,

especially to a biologic that has al-ready been clinically tested and approved for use.

n.

A biological product that is biosimilar to an existing product,

especially to a biologic”

Keep in mind that an adjective (adj.) describes a noun, while a noun (n.) is a person, place, thing, or idea.

Frankly, I didn’t find this very helpful. So I did what I considered the logical thing and looked to the Food and Drug Administration (FDA) website at https://www.fda.gov/media/108905/download for more explanation:

“A biosimilar is a biological product

FDA-approved biosimilars have been compared to an FDA-approved biologic, known as the reference product. Reference and biosimilar products are:

Large and generally complex molecules

Produced from living organisms

Carefully monitored to ensure consistent quality

Meet FDA’s rigorous standards for approval

Are manufactured in FDA-licensed facilities

Are tracked as part of post-market surveillance to ensure continued safety

A biosimilar is highly similar to a reference product

For approval, the structure and function of an approved biosimilar were compared to a reference product, looking at key characteristics such as:

Purity

Molecular structure

Bioactivity

The data from these comparisons must show that the biosimilar is highly similar to the reference product.

A biosimilar has no clinically meaningful differences from a reference product

Studies were performed to show that biosimilars have no clinically meaningful differences in safety, purity or potency (safety and effectiveness) compared to the reference product:

Pharmacokinetic and, if needed, armacodynamic studies

Immunogenicity assessment

Additional clinical studies as needed

Studies may be done independently or combined.

A biosimilar is approved by FDA after rigorous evaluation and testing by the applicant

Prescribers and patients should have no concerns about using these medications instead of reference products because biosimilars:

Meet FDA’s rigorous standards for approval

Are manufactured in FDA-licensed facilities

Are tracked as part of post-market surveillance to ensure continued safety”

Okay! Now we’re talking. Pretty simple to understand, isn’t it? Well, maybe there’s a word or three we might need defined. Let’s take another look. These two definitions are from Dictionary.com.

“Pharmacokinetic – the branch of pharmacology that studies the fate of pharmacological substances in thebody, as their absorption, distribution, metabolism, and elimination.

Immunogenicity – causing or capable of producing an immune response.”

Wikipedia offered this interesting difference between Pharmacokinetic and Pharmacodynamics.

“Pharmacodynamics is the study of how a drug affects an organism, whereas pharmacokinetics is the study of how the organism affects the drug. Both together influence dosing, benefit, and adverse effects.”

The point here is that the synthetic drug and biosimilars are not the same. Maybe my guess at their definition is far off the mark.  And lest you’re beginning to think this is a cancer blog rather than a Chronic Kidney Disease blog, biosimilars are used in CKD, too.

This snippet from the Clinical Journal of the American Society of Nephrology (CJASN) at https://cjasn.asnjournals.org/content/early/2018/08/03/CJN.01980218 will give you the idea:

“Most recognizable to nephrologists is the biologic recombinant human erythropoietin (rHuEPO). Considerably more expensive to develop and produce, biologics are more structurally complex than small-molecule drugs. By 2020, biologics will constitute an estimated 27% of spending on worldwide pharmacologics.”

Remember erythropoietin, more commonly known among CKD patients as epo? Not to worry; MedicineNet at https://www.medicinenet.com/erythropoietin/article.htm will remind us:

Erythropoietin (EPO) is a hormone produced by the kidney that promotes the formation of red blood cells by the bone marrow. The kidney cells that make erythropoietin are sensitive to low oxygen levels in the blood that travels through the kidney.”

Un-oh, I almost forgot to explain the difference between biosimilars and biologics. According to the Congressional Research Service at https://fas.org/sgp/crs/misc/R44620.pdf:

“A biological product, or biologic, is a preparation, such as a drug or a vaccine, that is made from living organisms. Compared with conventional chemical drugs, biologics are relatively large and complex molecules. They may be composed of proteins (and/or their constituent amino acids), carbohydrates (such as sugars), nucleic acids (such as DNA), or combinations of these substances.

Biologics may also be cells or tissues used in transplantation. A biosimilar, sometimes referred to as a follow-on biologic, is a therapeutic drug that is highly similar but not structurally identical, to a brand-name biologic (i.e., the reference product). This is in contrast to a generic chemical drug, which is an exact copy of a brand-name chemical drug (i.e., the reference listed drug). Because biologics are more complex than chemical drugs, both in composition and method of manufacture, biosimilars will not be exact replicas of the brand-name product, but may instead be shown to be highly similar. However, for many years, the drug industry and the Food and Drug Administration (FDA) have coped with the inherent variability in biological products from natural sources. FDA maintains that the batch-to-batch and lot-to-lot variability that occurs for both brand-name biologics and biosimilars can be assessed and managed effectively.”

Hmmm, looks like I’ve made a fairly simple concept terribly complex.

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!

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!

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!

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!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“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.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

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.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Chemo and Kidneys

Cancer has become an everyday word around here. While I have no personal acquaintance with cancer, too many friends and readers do. That got me to thinking. If you had chronic kidney disease and cancer, how would your already poorly functioning kidneys react to the chemotherapy?

We do need to start with some basics here. First, what is chemotherapy? According to the American Cancer Society at https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/chemotherapy/how-chemotherapy-drugs-work.html:

“More than 100 chemotherapy or chemo drugs are used to treat cancer – either alone or in combination with other drugs or treatments. These drugs are very different in their chemical composition, how they are taken, their usefulness in treating specific forms of cancer, and their side effects.

Chemotherapy works with the cell cycle

Chemotherapy drugs target cells at different phases of the process of forming new cells, called the cell cycle. Understanding how these drugs work helps doctors predict which drugs are likely to work well together. Doctors can also plan how often doses of each drug should be given based on the timing of the cell phases.

Cancer cells tend to form new cells more quickly than normal cells and this makes them a better target for chemotherapy drugs. However, chemo drugs can’t tell the difference between healthy cells and cancer cells. This means normal cells are damaged along with the cancer cells, and this causes side effects. Each time chemo is given, it means trying to find a balance between killing the cancer cells (in order to cure or control the disease) and sparing the normal cells (to lessen side effects).”

Uh-oh, “normal cells are damaged along with the cancer cells.” Let’s see if we can get a bit more specific here and find out what happens to kidney cells. The Canadian Cancer Society at http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/chemotherapy/side-effects-of-chemotherapy/kidney-damage-and-chemotherapy/?region=on#ixzz51dnKcgtI offers the following information:

“Some chemotherapy drugs can damage the kidneys (nephrotoxicity). The kidneys break down and remove many chemotherapy drugs from the body. When chemotherapy drugs break down, they make products that can damage cells in the kidneys, ureters and bladder. The potential for kidney damage varies with the type of chemotherapy drug used.

Causes

Chemotherapy drugs that can cause kidney damage include:
• cisplatin (Platinol AQ)
• carboplatin (Paraplatin)
• nitrosureas, such as carmustine (BiCNU, BCNU)
• mitomycin (Mutamycin)
• methotrexate – especially if high doses are used

Whether or not a chemotherapy drug will cause kidney damage depends on:
• the dose of the drug used
• if other drugs, which also have the potential to damage the kidney, are used at the same time
• if the person already has kidney disease”

Look at the last item on the list. That’s us; we already have kidney disease. Cancer.Net at https://www.cancer.net/navigating-cancer-care/older-adults/when-cancer-not-your-only-health-concern gives us just a bit more information about chemotherapy when you already have CKD. They also mention diabetes which is one of the leading causes of CKD.

“Diabetes. If you have diabetes, you need to monitor your blood glucose (blood sugar) levels closely during cancer treatment. Some chemotherapy and medications used to lower side effects (such as steroids) can raise your blood sugar levels. These levels might also go up because you are less physically active or under stress. Side effects like nausea and vomiting also affect your blood sugar.

Your doctor might also recommend:
• Taking low-sugar food supplements
• Taking different anti-nausea medications
• Using fast-acting insulin at times during cancer treatment
• Keeping a record of your blood sugar levels. You and your doctor can look at them during clinic visits. Controlling your blood sugar will help make sure you can stay on your cancer treatment schedule.

Kidney disease. Your kidneys might not work as well as you get older. So adults over 65 might have more problems with some types of chemotherapy. The drugs can be difficult for your kidneys to handle. This can raise your risk of kidney problems. How well your kidneys work might determine the type of chemotherapy you can have, or how often you have it.

If you are on dialysis, talk with your oncologist. Dialysis cleans your blood when your kidneys do not work well enough to do it. But dialysis may also clean the chemotherapy drugs out of your body before they can work.”

This does address older adults which is why I believe they mention age as a CKD risk factor. We know that’s not the only risk factor.

But there is hope. Take a look at what appeared in NDT (the respected European Nephrology, Dialysis, Transplantation Journal). It’s a bit a technical, but you can read more of the study at https://academic.oup.com/ndt/article/30/12/1979/2459906:

“One of the important drug-related problems in patients with renal impairment is inappropriate medication use and dosing errors…. Along this line, many cytotoxic drugs and their active/toxic metabolites are eliminated through the kidney depending on how much of the substance undergoes renal filtration, tubular secretion and/or tubular reabsorption. Hence, patients with both acute kidney injury (AKI) and CKD receiving chemotherapeutic agents often possess alterations in their pharmacokinetic parameters such as drug absorption, distribution, protein binding, biotransformation and renal excretion, which may result in the accumulation of potentially toxic components and over-dosage …. Therefore, clinicians must be wary to appropriately adjust doses of drugs that are excreted primarily by the kidneys. This requires dosing according to the calculated or measured creatinine clearance or eGFR formulas, which will allow the safe use of chemotherapy in patients with underlying kidney disease.”

Interesting to me is readers and friends’ reactions to chemo. Some have none, other than high energy for a day or two after their treatment. Others are nauseous and depleted of energy. It depends on your unique body chemistry and the ingredients in your chemo cocktail (for lack of a better term).

You can probably add quite a bit more – and I wish you would – since I am limited by a word count. Readers with kidney cancer, will you weigh in? And those who have both CKD and chemo, would you, too?

Brag time! After being included in Healthline’s Top Six Kidney Disease Blogs two years in a row, this year SlowItDownCKD has been awarded a place on BlogFeedSpot’s Top 75 Nephrology Blogs GLOBALLY. You know that expression the British readers use – gob smacked? That’s me!

I hope your Chanukah has been a mass of sweet, fried celebrations. See you on Christmas.

Oh, there’s still time to win a copy of the newly published SlowItDownCKD 2011 in the Chanukah Book Giveaway Contest. If you haven’t won a book this year, all you have to do is be the first person to correctly answer: What percentage of people with CKD are aware they have the disease?

Until next week,
Keep living your life!

Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

Taming the Wild Weed

I know someone who is a kidney donor. That’s actually how we met. I went to a conference to learn what I could learn and she was there at the invitation of the presenters. I was drawn to her right away not knowing who she was or why she was there… something about her magnetic personality, I think. That was years ago and since then I’ve attended her social media workshop and followed her closely on Instagram. Now she’s involved with medical marijuana. That got me to thinking.

So I did a little searching. Back in 2013, the National Kidney Foundation answered a reader’s question in their Ask the Doctor blog by responding more to the smoking than the marijuana:
“Smoking is not good for any person. Smoking is not safe for any person. I know of no specific ill effects of marijuana on the kidney.”

It seemed to me something must have been discovered about medical marijuana and chronic kidney disease in the last four years, so I kept digging and found this 2014 article from Phoenix New Times at http://www.phoenixnewtimes.com/arts/can-i-get-a-medical-marijuana-card-for-chronic-kidney-disease-6577499:

“Medical-grade cannabis can help with pain management, but there are still alternating schools of thought as to whether weed helps or hurts the kidneys. Claims that marijuana injures the kidneys often point to smoking as a damaging factor, but there are alternative methods of ingesting cannabis, including vaporizing, tinctures, and infusing the drug into food.

Additionally, a joint study by the University of Calgary and the University of Alberta concluded that, ‘Even small improvements in symptoms with the use of THC: CBD [cannabinoids, the active ingredients in cannabis] in patients with difficult-to-treat symptoms may be clinically meaningful.’

It seems, if you avoid smoking it, much more evidence exists that cannabis can help with the side effects of CRD, including nausea, loss of appetite, and weight loss.”

CRD means Chronic Renal Disease, an alternative name for CKD.

Well, that’s a bit more informative, but still, three years old. By now I was curious to know how marijuana worked in the first place. United Patients Group at https://unitedpatientsgroup.com/resources/how-medical-marijuana-works had the answer and the date on their site was only last year.

“Major Cannabinoids in Medical Marijuana

What THC Is and Its Effects

THC stands for delta-9-tetrahydrocannibinol. It is probably the best known cannabinoid present in medical marijuana. Physically it acts as a muscle relaxant and anti-inflammatory and psychologically it acts as a stimulant. This makes medical marijuana strains high in THC a good choice for patients who need relief while also to remain alert and active.

THC in medical marijuana acts in the following ways:
• anti-epileptic
• anti-inflammatory
• anti-depressant
• stimulates appetite
• lowers blood pressure
• apoptosis (self induced cell death)

What CBD Is and Its Effects

CBD stands for cannabidiol. Cannabidiol actually reduces the psychological effects of medical marijuana. For most patients, a strain that has high THC and high cannabidiol will have fewer “mental” effects and more physical ones. High cannabidiol medical marijuana strains, like Blueberry and Harlequin, are especially effective for illnesses with strong physical symptoms.

Cannabidiol’s effects include:
• reduced pain
• reduced anxiety
• reduced nausea
• sedative effects
• anti-convulsive
• anti-schizophrenic
• arrests the spread of cancer

What CBN Is and Its Effects

CBN is cannabinol, not to be confused with Cannabidiol. Cannabinol is very similar to THC, but has less psychological effects. It is produced as THC breaks down within the medical marijuana plant. High THC will make cannabinol’s effects stronger, and very high cannabinol concentrations can produce undesirably strong head highs.

Cannabinol levels tend to be high in medical marijuana strains like Strawberry Haze and Blue Rhino, which can be particularly helpful for:
• lowering pressure in the eye (such as with glaucoma)
• analgesic
• anti-seizure

What CBC Is and Its Effects

CBC stands for cannabichromene. Cannabichromene’s main action is to enhance the effects of THC. High cannabichromene levels will make a high-THC medical marijuana strain much more potent.

Cannabichromene working together with THC is known to be a:
• sedative
• analgesic
• anti-inflammatory

What CBG Is and Its Effects

CBG is an abbreviation for cannabigerol. Cannabigerol has no psychological effects on its own, and is not usually found in high amounts in most medical marijuana. Scientists believe that cannabigerol is actually one of the oldest forms of cannabinoids, meaning it is essentially a “parent” to the other cannabinoids found in medical marijuana. It also has anti-microbial properties.

Cannabigerol has physical effects such as:
• lowering pressure in the eye
• anti-inflammatory
• sedative
• sleep assistance

Combining Strains

Alone, none of the five major cannabinoids are as effective as when they work together. These five cannabinoids also work with the minor compounds in marijuana, and this is probably one reason that medical marijuana replacements like Marinol do not work very well.

Professional medical marijuana growers can analyze their medical marijuana strains to breed and grow medication for patients with the desired range of levels of each major cannabinoid. Using this knowledge of what each compound does helps medical marijuana pharmacists, or budtenders, find the right combination for patients to treat specific conditions and find maximum relief.”

I am not at a point where I would consider medical marijuana since my only symptoms are occasional brain fog and tiredness. Should I be experiencing the kind of pain some CKD users do, I would revisit this decision but I’d have to keep in mind that using this substance could hurt my chances of a transplant.

According to Joshua L. Rein, DO and Christina M. Wyatt, MD of the Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY as stated in their research study at http://www.ajkd.org/article/S0272-6386(17)30810-7/, as of this year:

“Twenty-nine US states have established medical marijuana programs, 8 of which have also legalized recreational marijuana, and Canada is expected to legalize recreational marijuana in 2018. Advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) are chronic conditions with significant associated morbidity and mortality.”

Don’t get confused. Medical marijuana is not a cure for CKD and is not suggested as one. However, should you have need of pain relief, it may offer you some… IF you live in a place where it is legal and IF your doctor thinks it’s a good option for you.

Until next week,
Keep living your life!

Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

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.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

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

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

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.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

Getting a Little Too High

You know those blood and urine tests you take periodically?  Have you ever looked at your uric acid levels? It might be worth the effort. This is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Uric Acid levels in the blood can indicate that you’re at risk for gout, kidney stones, or kidney failure.  It’s the kidney’s job to filter uric acid from the body.  A buildup means the kidneys are not doing their job well.”

For the first time ever – and I’ve had Chronic Kidney Disease for nine years – my uric acid levels were high. Why now? What could this mean? I already know I have Chronic Kidney Disease. I haven’t had a kidney stone in nine years and was unaware of having that one until my nephrologist told me I did. Is it gout?

Time to back track. What is uric acid anyway?

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (Hang on; I’m working on simplifying that title.), I used the Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/uric%20acid for this definition:

“URIC ACID: a white odorless and tasteless nearly insoluble acid C5H4N4O3 that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {A little help here: this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout.”

Back to gout, in SlowItDownCKD 2016, I wrote a little bit about one of the causes of gout: purines in our diet.

“According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

‘Purines (specific chemical compounds found in some foods) are broken down into uric acid. A diet rich in purines from certain sources can raise uric acid levels in the body, which sometimes leads to gout. Meat and seafood may increase your risk of gout. Dairy products may lower your risk.’

It seems to me a small list of high purine foods is appropriate here. Gout Education at http://gouteducation.org/patient/gout-treatment/diet/ offers just that. This also appears to be an extremely helpful site for those wanting to know more about gout.

“Because uric acid is formed from the breakdown of purines, high-purine foods can trigger attacks. It is strongly encouraged to avoid:

  • Beer and grain liquors
  • Red meat, lamb and pork
  • Organ meats, such as liver, kidneys and sweetbreads
  • Seafood, especially shellfish, like shrimp, lobster, mussels, anchovies and sardines”

This doesn’t work for me. Except for shrimp which I’ll have two or three times a year, I don’t eat or drink any of this food.

Grrrrrr. Back to the drawing board. Let me see if I can find other causes of high uric acid levels. The Mayo Clinic at http://www.mayoclinic.org/symptoms/high-uric-acid-level/basics/causes/sym-20050607 had some other suggestions:

“Factors that may cause a high uric acid level in your blood include:

  • Diuretic medications (water pills)
  • Drinking too much alcohol
  • Genetics (inherited tendencies)
  • Hypothyroidism(underactive thyroid)
  • Immune-suppressing drugs
  • Niacin, or vitamin B-3
  • Obesity
  • Psoriasis
  • Purine-rich diet — liver, game meat, anchovies, sardines, gravy, dried beans and peas, mushrooms, and other foods
  • Renal insufficiency — inability of the kidneys to filter waste
  • Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers

Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.”

As far as I know, I don’t have an inherited tendency toward high uric acid levels. Nor do I have hypothyroidism, take immune-suppressing drugs, niacin, or vitamin B-3. We already know that I don’t drink alcohol or eat purine rich foods, and have CKD. I’ve never been treated for cancer, so what’s left?

Hmmm, I do take a diuretic, am obese, and have psoriasis. Wait a minute. I thought diuretics helped you reduce the amount of water and salt in your body. Now they may cause high uric acid? How? Drugs.com at https://www.drugs.com/health-guide/gout.html helped me out here:

“The kidneys do not excrete enough uric acid. This can be caused by kidney disease, starvation and alcohol use, especially binge drinking. This also can occur in people taking medications called diuretics (such as hydrochlorothiazide or furosemide).” Time to speak with my doctor about this prescription, I think.

My psoriasis is so latent that I often forget I have it. However, Arthritis.org at http://www.arthritis.org/about-arthritis/types/psoriatic-arthritis/articles/psoriatic-arthritis-increases-gout-risk.php tells us:

“In gout, uric acid builds up in the joints and tissue around the joints – often the big toe – and forms needle-like crystals, which can cause sudden episodes of intense pain and swelling. If left untreated, gout can become chronic and lead to joint damage. In psoriasis and psoriatic arthritis, uric acid is thought to be a byproduct of rapid skin cell turnover and systemic inflammation.”

That also explains what gout is, which I’d neglected to do. Something kept nagging at my memory (oh, to have a clear memory without the nagging for a change.) Got it. It was in SlowItDown 2016:

“Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association:

‘Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.’

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

I’m beginning to see the pattern here. Well, what about the weight? I discovered this quote on The Arthritis Foundation’s Gout Blog at http://blog.arthritis.org/gout/weight-gout-risk/ :

“’Higher weight is associated with higher uric acid levels in the blood, which therefore increases gout risk,’ says Tuhina Neogi, MD, PhD, associate professor of medicine at Boston University School of Medicine.”

That strong connection between inflammation and weight leaves me speechless. It seems so transparent, yet I somehow manage to forget it repeatedly. Ugh!

Book news: In honor of my first born’s birthday, my miracle (I was considered a really old first time mother back then), my sun-up-in-the-sky (That’s the translation of her Tibetan name), all my kidney books will be reduced in price by 20%. as of May 6th. Go to Amazon.com and/or B&N.com and then thank Nima for the present.

Until next week,

Keep living your life.

How Sweet She Is

For 12 years, sweet Ms. Bella has positioned herself just inside my office door as I wrote, researched, edited, and formatted. For 12 years, sweet Ms. img_3326Bella has greeted me as effusively when I returned from a trip to the mailbox as she did when I returned from a trip to Alaska. For 12 years, sweet Ms. Bella has shared one sided conversations with me about any and everything. For 12 years, sweet Ms. Bella has adored me as no other being on earth ever has.

I’ll miss that. Sweet Ms. Bella crossed what I’m told is called The Rainbow Bridge this morning. .. and it was my decision. I’ve known for months that she had lymphedema. First we tried this. Then we tried that. And finally there was nothing else left to try. I am oh-so-sad without my boon companion, but it was time. She knew it and I knew it. May your soul come back to me, my sweet Ms. Bella.

I’ve been sad for a while knowing that I would have to make this decision and wondering how I would know when she’d had enough. I watched…and watched…and watched, yet she made it perfectly clear when her legs wouldn’t hold her up anymore and her cancerous lymph nodes started to impede her eating. She is at rest now.

What have I done to my kidneys with all this sadness, I wondered. I don’t know via my lab reports because I was just tested last Thursday and Urine_sampledidn’t know about sweet Ms. Bella’s cancer when my blood and urine were tested three months ago. So I did what I could to find out: I researched.

I found this on the National Kidney Foundation’s site at https://www.kidney.org/news/newsroom/nr/depression-kd:

New York, NY (July 1, 2012) – People with kidney disease who have symptoms of depression may be on the fast track to dialysis, hospitalization or death, according to a new study published in the July issue of the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation.”

But I’m not depressed; I’m sad.  Well, what’s the difference? I turned to my old buddy WebMD for some help here:

“….Also known as clinical depression, major depressive disorder, or unipolar depression, major depression is a medical condition that goes beyond life’s ordinary ups and downs. Almost 18.8 million American adults experience depression each year, and women are nearly twice as likely as men to develop major depression. People with depression cannot simply ‘pull themselves together’ and get better. Treatment with counseling, medication, or both is key to recovery.”

Since I’m one of those people who always manage to get myself back together – and fairly quickly – I’d say I’m not depressed. I do suggest you read more about depression at http://www.webmd.com/depression/is-it-depression-or-the-blues if this strikes a chord with you.

So let’s go back to sadness and the kidneys. This is from a 5/21/14 article on a site that’s new to me: Medical Daily at http://www.medicaldaily.com/can-powerful-emotions-kill-you-negative-health-effects-anger-stress-sadness-and-shock-283682:

heart attack” ‘It’s called heartbreak for a reason. When you’re experiencing deep grief or sadness, it takes a toll on your health, too. One study from St. George’s University of London found that it is actually possible to die of a broken heart — bereavement increases your risk of a heart attack or stroke by nearly double after a partner’s death, the researchers discovered. We often use the term a ‘broken heart’ to signify the pain of losing a loved one and our study shows that bereavement can have a direct effect on the health of the heart,’ Dr. Sunil Shah, senior lecturer in public health at St. George’s, said in a press release.”

There’s a firm connection between heart health and kidney health. This is from SlowItDownCKD 2015:

“We’re used to reading about anemia and high blood pressure as the connection between CKD and Heart Disease, but here are two other causes.

DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and- diagnosis/ chronic-kidney-disease-and-your-heart/e/4730 once again jumps in to educate us:

‘High homocysteine levels: Damaged kidneys cannot remove extra homocysteine, an amino acid in the blood. High levels of homocysteine can lead to coronary artery disease, stroke and heart attack.IMG_2980

Calcium-phosphate levels: Damaged kidneys cannot keep calcium and phosphorus levels in balance. Often, there’s too much phosphorus and calcium in the blood. When this happens, there’s a risk for coronary artery disease.’”

Hmmm, just by having Chronic Kidney Disease, we run the risk of heart problems.  Now sadness – maybe ‘deep grief’ is a more apt description – may add to that risk. As much as I love sweet Ms. Bella and will miss her, I can’t honestly say this is true for me. It feels like there’s a big difference between deep grief and sadness.

Just to make certain the difference between depression and sadness is clear, I’m repeating this information from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Make The Connection, a veterans’ support site tells us

‘Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may FullSizeRender (3)find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

It doesn’t look like my short term sadness is worsening my kidneys in any way, but if you’re not sure whether you need help with yours, or if it is truly depression, seek help. It can’t hurt to be careful.

FullSizeRender (2)

I’m certain sweet Ms. Bella is not suffering anymore and that is already doing wonders for my peace of mind… and my sadness.

Until next week,

Keep living your life!

We, the People Who Have CKD…

Happy Independence Day! Here in the United States, we usually celebrate with fireworks and bar-b-ques that may include renal friendly foods, at fireworksleast at my house. We take our pets inside and try to shield them from the sounds of the fireworks that make them so uncomfortable and then we try to enjoy the heat, the sun, and the parades.

I’m all for Independence Day celebrations, but shy away from them myself. I’m like our pets; I can do without the noise. Since getting older (or medically ‘elderly,’ which always gives me a giggle), I can also do without the heat and the crowds. We used to have renal friendly bar-b-ques at our house, but now our kids are older and visit fiancés, go to bachelorette weekend celebrations, or go camping in other states during this long holiday weekend.

And I realize I do not want to be that far from what is euphemistically called a ‘restroom’ here in Arizona for all that long. There could be many reasons for that, my elderly state (Humph!); a urinary tract infection (UTI); a weak bladder; or interstitial cystitis.

A reader and good online friend – another Texas connection, by the way – asked me to write about interstitial cystitis today. There seems to be some confusion among us – meaning Chronic Kidney Disease patients – between chronic UTIs and interstitial cystitis.Digital Cover Part 2 redone - Copy

UTI is a descriptive term we probably all know since we have CKD and have to be aware of them. We have to be careful they don’t spread to the bladder and, eventually (but rarely), to the kidneys.  That can cause even more kidney damage. I explained a bit more in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder. The urologist actually had me look through the cystoscope (I’m adding this today: a sort of long, narrow tube inserted to view both the urethra and bladder) myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.”

We know we have to be vigilant.  That’s where interstitial cystitis comes in. Let’s take a look at SlowItDownCKD 2015 for more information about cystitis:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….

SlowItDownCKD 2015 Book Cover (76x113)Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.’”

Okay so we get the cystitis part of the condition, but what does interstitial mean? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=9587defines it this way:

“Pertaining to being between things, especially between things that are normally closely spaced. The word interstitial is much used in medicine and has specific meaning, depending on the context. For instance, interstitial cystitis is a specific type of inflammation of the bladder wall.”

Hang on, just one more definition. This one is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439

“Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain. Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it’s full and then signals your brain that it’s time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people….”bladder

Hmmm, then this is clearly not a UTI. So why do we have to be careful about it? Time to look at the causes – or not. According to The National Institute of Diabetes, Digestive, and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx,

“Researchers are working to understand the causes of IC/PBS and to find effective treatments.

…Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.”

* IC means interstitial cystitis; PBS is painful bladder syndrome

Maybe we should be looking at the cure instead – or not. “At this time there is no cure for interstitial cystitis (IC).” But ichelp does mention a number of possible treatments, some of which we cannot use as CKD patients since they may harm the kidneys. Take a look for yourself at: http://www.ichelp.org/diagnosis-treatment/

Whoa! No definitive cause, no cure, and treatments which may harm our kidneys. Where’s the good news in this?  Take another look at the information from The National Institute of Diabetes, Digestive, and Kidney Diseases again. Notice the word ‘inflammation’?

Bingo. CKD is also an inflammatory disease and may be that “more general condition that causes inflammation in various organs and parts of the body.” Wait, I just remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:DIGITAL_BOOK_THUMBNAIL

“Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.  By the way, it’s said that alkaline foods are a better way of eating should cancer rear its ugly head in your life.”

So it all comes back to inflammation.  Say, didn’t I recently write a blog about acidity vs. alkaline and inflammation?  Now there’s a good way to avoid the heat, the sun, and the parades of Independence Day. Stay inside (maybe while someone is bar-b-queuing renal friendly food outside) and peruse old blog posts.

What is itUntil next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….”

SlowItDownCKD 2015 Book Cover (76x113)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

Keep living your life!

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline. ‘”

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

IMG_1398

 

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

“But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.”

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

I thought it was a mean April Fool’s joke, but it wasn’t. I thought I’d heard wrong, but I hadn’t. I thought this was a mistake, but it wasn’t. Both of my brothers have Parkinson’s Disease. Now another non-blood family member had just been diagnosed with the same disease… out of the blue, unexpectedly, seemingly impossibly.

PD – Parkinson’s Disease in this case, not to be confused with Peritoneal Dialysis – is not only a genetic driven disease, but sometimes an environmentally driven one. This relative had been in Viet Nam. This relative had had the job of patrolling the areas of the jungle that had been saturated with Agent Orange to defoliate for better visibility. He’d done that every 15 days for over a year. 45 years later, he’s been diagnosed with PD. A coincidence? Not according to his neurologist who immediately told him to file disability papers with the Veterans’ Administration based on this information.

agent orangeMy mind was tripping over itself trying to explain this all to you – and to me. I needed to know just what this Agent Orange was. Dictionary.com at http://www.dictionary.com/browse/agent-orange?s=t explained:

“a powerful herbicide and defoliant containing trace amounts of dioxin, a toxic impurity suspected of causing serious health problems, including cancer and genetic damage, in some persons exposed to it and birth defects in their offspring: used by U.S. armed forces during the Vietnam War to defoliate jungles.”

Dioxin? What’s that? It sounded familiar, but I couldn’t quite remember. I wanted a definition I could understand so I jumped right over to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=15798.

“One of a number of poisonous petroleum-derived chemicals which are produced when herbicides (substances used for killing plants) are made or when plastics are burned. Dioxins are chemically dibenzo-p-dioxins….”

Poisonous. That made me wonder what this poison could do to a human body. This is the list of those possibilities I found on the Veterans’ Administration’s Agent Orange website at http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp

AL Amyloidosis, A rare disease caused when an abnormal protein, amyloid, enters tissues or organs

Chronic B-cell Leukemias, A type of cancer which affects white blood cellsdioxin

Chloracne (or similar acneform disease), A skin condition that occurs soon after exposure to chemicals and looks like common forms of   acne seen in teenagers.

Diabetes Mellitus Type 2 (Me here: Diabetes is the number one cause of CKD.), A disease characterized by high blood sugar levels resulting from the body’s inability to respond properly to the hormone insulin

Hodgkin’s Disease, A malignant lymphoma (cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia

Ischemic Heart Disease, A disease characterized by a reduced supply of blood to the heart,  that leads to chest pain

Multiple Myeloma, A cancer of plasma cells, a type of white blood cell in bone marrow

Non-Hodgkin’s Lymphoma, A group of cancers that affect the lymph glands and other lymphatic tissue

tremorParkinson’s Disease (My bolding), A progressive disorder of the nervous system that affects muscle movement

Peripheral Neuropathy, Early-Onset, A nervous system condition that causes numbness, tingling, and motor weakness.

Porphyria Cutanea Tarda, A disorder characterized by liver dysfunction and by thinning and blistering of the skin in sun-exposed areas.

Prostate Cancer, Cancer of the prostate; one of the most common cancers among men

Respiratory Cancers (includes lung cancer), Cancers of the lung, larynx, trachea, and bronchus

Soft Tissue Sarcomas (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma, or mesothelioma), A group of different types of cancers in body tissues such as muscle, fat, blood and lymph vessels, and connective tissuespd

My heart sank. But what of the Parkinson’s patient who also has Chronic Kidney Disease. How will the CKD be affected by the PD? We already know we, as CKD patients, can develop muscle weakness and tiredness due to our poorly filtered blood (We know you’re trying, damaged kidneys.). Parkinson’s does the same. I couldn’t even image being the victim of doubly weak muscles.

I found a number of scholarly studies on the effects of PD on those with CKD, but each site was of the purchase-the-study-if-you-want-to-read-it type. That was a bit too costly for me. I still needed more information though.

I discovered that renal disease does contribute to “excessive daytime sleepiness in PD patients” (http://www.ncbi.nlm.nih.gov/pubmed/21435111), although I was actually looking for PD effects on CKD. We’re already tired. Does this mean we’ll be even more tired should we develop PD?

banner-nihlogoReady to be shocked? Here we go: “ESRD is significantly associated with an increased risk of Parkinson’s disease. Close surveillance for Parkinson’s disease should be considered for patients with ESRD.” Oh great. As if we didn’t have enough to worry about. By the way, ESRD is end stage renal disease. Once again, the National Institutes of Health gave us this information. Take a look at the study’s abstract at http://www.ncbi.nlm.nih.gov/pubmed/24751820.

While not exactly on topic, I found this disturbing similarity between the two diseases:

“Frustratingly, for kidney failure patients, the routine laboratory tests are almost never abnormal, and only hint abnormality when the failure process has already begun.  In Parkinson’s disease, as in kidney failure, a ‘threshold’ of cells must be lost before one manifests symptoms.”

There’s more, much more, from The Center for Movement Disorder and Neurorestoration at http://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/parkinsons-disease-information/

Now I’m beginning to wonder if the drugs for Parkinson’s exit the body through the kidneys, but I think that’s a topic for another blog. I also realize that having CKD may affect PD more than PD may affect CKD. Sometimes, I surprise myself with what I learn.SlowItDownCKD 2015 Book Cover (76x113)

On the other hand, I have some good news. Yay! SlowItDownCKD 2015 is now available in print form and the digital form has been updated somewhat. Click on the title to go right to Amazon. One of my readers tells me I get more editing done when I’m sick (Yep, I have the flu.) than at any other time. I believe she has a point there.What is it

Part 2

DIGITAL_BOOK_THUMBNAIL

 

Until next week,

Keep living your life!

Tempus Fugit Iterum or Time Flies When You’re Having Fun, Part 2

Who would have thought there was so much information to share about colonoscopies? And who thought it would actually be interesting? Not me. But acting like a grown up and taking care of my health is both informative (We all know I research everything. It seems to be a compulsion.) and interesting. One site brings me to another.

colonoscopySince last week, I’ve gotten a few questions about the topic. One is how often should this be done? As we learned last week, most people – those without any risk factors – start at the age of 50. I started a bit later than that and had normal results, so was told I wouldn’t need one for another ten years. Yay!

That’s when things changed: sometime during the second decade after the first colonoscopy. This was almost five years ago.  The change was that several colon polyps were removed this time; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma).

Apparently, bleeding colon polyps are troublesome because they can be the source of your fatigue if you already have low levels of iron as most CKDers do. At least, that’s what my former nephrologist said. Although they were bleeding, removing them did not stop the fatigue.  Maybe it was the sleep apnea…or maybe it was just plain being a Chronic Kidney Disease patient.Bleeding

Now, about that adenoma. AboutHealth at http://coloncancer.about.com/od/glossary/g/Adenoma.htm defines an adenoma in the following way.

An adenoma is a pre-cancerous (benign) growth that may occur in the colon. Adenomas arise from or resemble glands and can lead to colon cancer. This means that if left untreated, some adenomas eventually will develop into colon cancer. If an adenoma becomes cancerous, it is called an adenocarcinoma. Fortunately, adenomas typically are easy to find and to remove before they become cancerous, during routine colon cancer screening tests, such as adenomaa colonoscopy or a flexible sigmoidoscopy.

The American Cancer Society at http://www.cancer.org/cancer/news/specialcoverage/7thingstoknow has an easily understood, easy to read explanation of the whole process of colonoscopy and explains more than I have here.

While it sounds like an awful procedure, more often than not, you’re anesthetized first, both to make sure you don’t move (which might cause a perforation) and for your own comfort.

You are a medically comprised patient.  I’ll repeat that – you are a medically comprised patient.  As such, you need to be treated differently as far as anesthesia. Two things are very clear about anesthesia for us.

  1. The dosage of the anesthesia may have to be modified and
  2. You must let your doctor know on your first visit that you have Chronic Kidney Disease.

I was both disgusted and fascinated by the photos my gastroenterologist sent me after the procedure.  I saw the colon polyps.  I saw the inside of my colon. I simultaneously wanted to get as far away from those revolting pictures as I could AND examine them carefully to see just what was going on inside me.

I keep using the term colon polyp, but haven’t explained it yet. MedicineNet at http://www.medicinenet.com/colon_polyps/article.htm#what_are_colon_polyps will help us out here.

Colon polyps are growths that occur on the inner lining of the large intestine (colon) and usually protrude into the colon. Polyps form when the genetic material within the cells lining the colon changes and becomes abnormal (mutates). Normally, the immature cells lining the colon are programmed to divide (multiply), mature, and then die in a very consistent and timely fashion. However, the genetic changes that occur in the lining cells prevents (sic) the cells from maturing, and the cells do not die. This leads to an accumulation of immature, genetically abnormal cells, which eventually results in the formation of polyps. The mutations may occur as a sporadic event after birth or they may be present from before birth.

I’ve got to be honest. I don’t care how I got mine. I.simply.want.them.gone. It’s come home to me lately that I am closer to 70 than 60. It’s also come home to me lately that I love my life and want to keep it as long as I can.IMG_2867

Last week, I touched on the prep having to be tailored for your CKD, too. Here’s a warning from The National Kidney Foundation at https://www.kidney.org/atoz/content/oralsodium

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy.

The warning relates to the use of bowel cleansing agents, called sodium phosphate (OSP) products as laxatives or in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. These products can cause phosphate nephropathy.

On the other hand, The National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678056/  has suggestions, although the parentheses are mine.Miralax

For early chronic kidney disease, PEG (4 L polyethylene glycol) or SPMC (2 L sodium picosulphate plus magnesium citrate) are acceptable. Cases with late chronic kidney disease without dialysis should be prescribed with PEG or PEGA (2 L PEG plus ascorbic acid). SPMC have a risk of hypermagnesemia in patients with kidney disease without dialysis.

Obviously, that’s something to discuss with your nephrologist. By the way, one polyethylene glycol product is Miralax, an over the counter medication. The picture above does not indicate an endorsement of the product.

What is itHere I am in NYC, not spending all that much time thinking about CKD except for the sleep, diet, exercise, and lack of stress (nothing else, though) and having a grand old time with my daughter. In other words, I haven’t paid any attention to the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. That’s the book Geo was reading in last week’s blog. Do let me know if you’re one of the winners so we can celebrate you.

Oh, and don’t forget about that book’s twin younger siblings.IMG_1398

Until next week,

Keep living your life!

Time Flies When You’re Having Fun

IMG_1625Last week, Bear and I were in Las Vegas for a mini-family reunion. It was my mother’s nephew’s… let’s just say it was a combination of blood relatives and those we consider relatives without the blood connection.

What with the complimentary hotel room at the absolutely gorgeous SLS (which we understand was formerly the Sahara) and the gift of tickets to the outrageous show ‘Diva’ (male impersonators of female celebrities), an edifying tour of The Neon Boneyard, a family Las Vegas style buffet at Red Rock Casino, and a leisurely stroll down the overly-stimulating Fremont Street, we had a wonderful time.

I even got in my usual 20 minutes of gambling. I don’t really have tolerance or a liking for it, but it seemed the right thing to do since that was why the hotel gave us the two nights gratis. I won.IMG_1638

But in another way, I lost. My cousin Amy wasn’t there. She was part of this family. Her husband was there. Her uncle was there. Her mother and brothers were, but she wasn’t.  Three years ago she died of cancer.

She died within one week of my dearest, closest buddy on earth who also died of cancer. My buddy died of colorectal cancer. She’d refused any contact with the medical community for the last decade of her life and she paid the ultimate price for it.  A colonoscopy could have saved her life.

Almost five years ago, I had a colonoscopy… and now it’s time to have one again.  While this is not my favorite activity, I am willing to do so since cancer runs in my family and I’ve already had a bleeding polyp. These are not issues I usually share and, yes, it’s a bit awkward for me but if I can convince even one person who’s presently nauseated just thinking about colonoscopy to have one, it’s worth my personal discomfort.

While the term is becoming common, not everyone knows what a colonoscopy is. WebMd at http://www.webmd.com/colorectal-cancer/colonoscopy-16695 explains.

colonoscopy Colonoscopy is a test that allows your doctor to look at the inner lining of yoularge intestine (rectum and colon). He or she uses a thin, flexible tube called a colonoscope to look at the colon. A colonoscopy helps find ulcerscolon polyps, tumors, and areas of inflammation or bleeding. During a colonoscopy, tissue samples can be collected (biopsy) and abnormal growths can be taken out. Colonoscopy can also be used as a screening test to check for cancer or precancerous growths in the colon or rectum (polyps).

The colonoscope is a thin, flexible tube that ranges from 48 in. (122 cm) to 72 in. (183 cm) long. A small video camera is attached to the colonoscope so that your doctor can take pictures or video of the large intestine (colon). The colonoscope can be used to look at the whole colon and the lower part of the small intestine. A test called sigmoidoscopy shows only the rectum and the lower part of the colon.

Before this test, you will need to clean out your colon (colon prep). Colon prep takes 1 to 2 days, depending on which type of prep your doctor recommends. Some preps may be taken the evening before the test. For many people, the prep for a colonoscopy is more trying than the actual test. Plan to stay home during your prep time since you will need to use the bathroom often. The colon prep causes loose, frequent stools and diarrhea so that your colon will be empty for the test. The colon Normalprep may be uncomfortable and you may feel hungry on the clear liquid diet. If you need to drink a special solution as part of your prep, be sure to have clear fruit juices or soft drinks to drink after the prep because the solution tastes salty.

You have CKD; this is not the prep you will be using.

The National Institute of Health at https://www.nlm.nih.gov/medlineplus/colonoscopy.html suggests you have a colonoscopy for the following reasons.

  • To look for early signs of cancer in the colon and rectum. It may be part of a routine screening, which usually starts at age 50.
  • To look for causes of unexplained changes in bowel habits
  • To evaluate symptoms like abdominal pain, rectal bleeding, and weight loss

Let’s talk about prep a bit more. You cannot take the usually prescribed Fleet enemas or anything with oral sodium phosphate. Get it?  Sodium?  Phosphate?  Both bad news for CKDers.  One possible alternative is a polyethylene glycol (PEG) solution such as Miralax.  As usual, check with your nephrologist.

DucolaxDucolax is also often prescribed as prep for the procedure, but everydayhealth.com at http://www.everydayhealth.com/drugs/dulcolax-laxative makes clear it’s not automatically safe for CKD patients. (Bisacodyl is the compound name; Ducolax is the brand name.)  Take note of the first item on the list.

If you have any of these other conditions, you may need a dose adjustment or special tests to safely use bisacodyl:

  • kidney disease;
  • trouble swallowing;
  • a history of bowel obstruction, diverticulitis, ulcerative colitis, or other intestinal disorder; or
  • if you are taking a diuretic (“water pill”).

This is decidedly turning into a two part blog.  More on the curiously challenging concept of colonoscopy next week.

We’re not the only ones who took a vacation. Here’s a picture of the man behind the title of Loyal Reader, Geo De Angelo, on his vacation:

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Meanwhile, back at the ranch (better known as my office), I wonder if you’re one of the winners in the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseWhat is it. You know, the GiveAway in which I paid for ten of each eighth book bought. If you are, please announce yourself either here in the comments section, on the Facebook page – https://www.facebook.com/WhatHowearlyCKD – or on Twitter @SlowItDownCKD so we can publicly congratulate you. If you haven’t seen the GiveAway yet, you can at http://www.amazon.com/What-How-Did-Get-Chronic/dp/1457502143/ref=sr_1_1?ie=UTF8&qid=1445197041&sr=8-1&keywords=What+Is+It+and+How+Did+i+gET+IT%3F+Early+stage+chronic+kidney+disease.

If you missed it, no worries.  I’m presently working on a different sort of GiveAway with a certain Facebook Kidney Disease Support Group.  More on that next week when I have all the details. Oh, and let’s not forget about the twins (presently being indexed) …IMG_1398

Until next week,

Keep living your life!

Sunshine and Superwoman

sad womanToday is just one of those days: Bear’s car is in the shop so I got up early to take him to work, I turned on the dishwasher and nothing happened, I posted what I thought was a non-political message and got a political rant in return, answered a text only to find that my childhood friend thought I was ignoring her.  I’ve got a pretty happy life, so this was a disconcerting start of the day to say the least.

And then I opened the lab results for yet another blood test.  The one I wrote about two weeks ago was from August; this one is from last week. Should have saved it for tomorrow.

While the out of range results weren’t that much out of range, they were out of range.  Since this is one of those days, all of a sudden this became of great concern to me.

The Vitamin D, 25-Hydroxy, Total was 28.6 instead of within the 30.1 -100 normal range.  It would probably help you understand my mystification if I let you know that I’ve been taking 2000 mg. of vitamin D daily for several years.

I went running right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to find out why this is important.  Thank goodness, I have my office copy!  How could anyone memorize everything they need to know about their health, I wonder.Book Cover

This is what I wrote about vitamin D (page 48):

  • The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use.
  • Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy.
  • Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together.
  • Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.
  • Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.

I have been itchy lately, but since my phosphate levels have never been out of range, I concluded it was just dry skin due to our low to nil humidity here in Arizona.  Maybe it’s not.  We’d been keeping my calcium levels low – but in range – since a bout with kidney stones several years ago. I also definitely stay out of the sun, another source of vitamin D, since a

sun-graphic1pre-cancerous face lesion. I’d had a bone density test recently and that was just fine, but had I been doing all the wrong things for my kidney health in protecting myself from kidney stones and melanoma?

Something was nagging at me about vitamin D, so I turned to the glossary of my book (page 136) and that’s where I found it:

“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

Affects the immune system.  But how?  Science Daily at http://www.sciencedaily.com/releases/2010/03/100307215534.htm provided the answer I sought:

“Scientists have found that vitamin D is crucial to activating our immune defenses and that without sufficient intake of the vitamin – the killer cells of the immune system — T cells — will not be able to react to and fight off serious infections in the body. The research team found that T cells first search for vitamin D in order to activate and if they cannot find enough of it will not complete the activation process.”

How did I miss that?  And how many others knew that vitamin D didn’t just build strong bones as we’d been taught in primary school?

nsaidsI imagine my nephrologist will up my vitamin d dosage when I see him next week, but I still can’t handle the sun or take calcium supplements.  Maybe there’s some food that can provide vast quantities of this vitamin.

But no, according to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/:

“Vitamin D is a fat-soluble vitamin that is naturally present in very few foods, added to others, and available as a dietary supplement.”

Well, I wanted to know what those foods were even if they could only provide 20% of the needed vitamin d at most.  I clearly remembered salmon, tuna, and egg yolks, but what else?  Mushrooms, of course.  And???

I had to turn to the internet for more suggestions. Fit Day at http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-foods-rich-in-vitamin-d.html informs us that milk, cereal, and even orange juice are vitamin d fortified. For me, that’s a joke.  I’m lactose intolerant, don’t like cereal, and o.j. has too much calcium in it.

I like fish, but two to three times a week?  I’m not sure I want to spend my five ounces of protein that way so often during a week.  I don’t care for eggs much, but am willing to eat them once a week just to eat something healthy. Mushrooms are really tasty, but my ¼ cup doesn’t go very far.

You know, just from moving myself to write, it doesn’t seem like such a bad day after all.IMG_0058

Which leads me to a thought I want to share: action is the road out of unhappiness.  I’m sure someone has thought of that before, but I own it now.  To that end, I’m working on The Book of Blogs and two other long time writing projects as well as having committed myself to Landmark Worldwide’s Wisdom Course.

Of course I still take the time to exercise (ugh!), sleep, and rest, but these projects are fun… and they make me happy.  We are capable of so much more than we think we are.

Until next week,

Keep living your life!