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!

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!

Something New and Entirely Different

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

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

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

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

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

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

How about some reminders right about now?

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

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

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

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

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

Albumin: Water soluble protein in the blood.

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

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

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

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

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

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

  • memory
  • thinking
  • language
  • judgment
  • behavior”

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

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

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

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

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

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

Until next week,

Keep living your life!

Rising to the Challenge

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein.”

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

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

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

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

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

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

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

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

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

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

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

Until next week,

 

Keep living your life!