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!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

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

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

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

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

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

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

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

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

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

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

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

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

American Kidney Fund www.kidneyfund.org/webinars

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

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

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

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

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

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

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

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

Prevention

Diagnostics

Treatment”

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

“Principles

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

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

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

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

Development

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

Coordination

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

Urgency

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

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

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

Until next week,

Keep living your life!

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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Getting It Right Once and For All

Brain fog is one thing, but I have forgotten the meaning of a certain phrase, looked it up, forgotten its meaning again, looked it up, forgotten its meaning again and so on for years. This has got to stop. That’s why I thought writing about it might ensconce the meaning in my brain once and for all. Bet you’re wondering what the phrase is by now. It’s multiple myeloma.

I think we all know that multiple means more than one, but more than one what in this case? And does adding it to the root word – myeloma – change its meaning in any way? Let’s find out together.

Do you know what the ICD is? Let me refresh your memory if you do. I defined it in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease in the following way:

“International Statistical Classification of Disease and Related Health Problems, provides the medical codes for illnesses.”

The Whole Health Organization currently released the 10th edition. There are three different codes for multiple myeloma in this latest edition according to www.findacode.com. I thought one of them would help us.

ICD-10-CM Diagnosis Code C90.00

Multiple myeloma not having achieved remission

Hypogammaglobulinemia co-occurrent and due to multiple myeloma; Light chain disease; Light chain nephropathy; Light chain nephropathy due to multiple myeloma; Multiple myeloma; Multiple myeloma stage i; Multiple myeloma stage ii; Multiple myeloma stage iii; Multiple myeloma w hypogammaglobulinemia; Smoldering multiple myeloma; Smoldering myeloma; Multiple myeloma with failed remission; Multiple myeloma NOS

ICD-10-CM Diagnosis Code C90.0

Multiple myeloma

solitary myeloma (C90.3-); solitary plasmactyoma (C90.3-); Kahler’s disease; Medullary plasmacytoma; Myelomatosis; Plasma cell myeloma

ICD-10-CM Diagnosis Code C90.01

Multiple myeloma in remission

ICD-10-CM Diagnosis Code C90.02

Multiple myeloma in relapse

We can discount C90.01 and C90.2 from the get go because we know that remission means subsiding and relapse means whatever it is has become active again.

I didn’t really understand the terms in the diagnosis codes but, from my fractured remembering, gathered this has to do with a sort of cancer. No harm; we know the coding and now need to find out what it is that’s being coded.

I jumped right over to the American Cancer Society at https://www.cancer.org/cancer/multiple-myeloma/about/what-is-multiple-myeloma.html and found exactly what I was afraid I would:

“Multiple myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are one of the main types of white blood cells in the immune system and include T cells and B cells. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Plasma cells are found mainly in the bone marrow. Bone marrow is the soft tissue inside bones. In addition to plasma cells, normal bone marrow is also the home for other blood cells such as red cells, white cells, and platelets.

In general, when plasma cells become cancerous and grow out of control, this is called multiple myeloma. The plasma cells make an abnormal protein (antibody) known by several different names, including monoclonal immunoglobulin, monoclonal protein (M-protein), M-spike, or paraprotein.

There are, however, other plasma cell disorders that also have abnormal plasma cells but do not meet the criteria to be called active multiple myeloma.”

One of them is monoclonal gammopathy of uncertain significance (MGUS) which I blogged about on April 30th of this year. Plasma cell disorders seem to be occupying my mind lately.

Wait, wait! Bone marrow. As was mentioned in SlowItDownCKD 2011, in writing about a Drugs.com article, it’s the kidneys that cause the

“…bone marrow … produce red blood cells.”

Yet, it’s the white blood cells that are part of the immune system. Remember my daughter Nima’s account of her gall bladder being removed in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2?

“…my white blood count was elevated to 12, an indication the gallbladder was infected.”

That 12 showed that she had many more than usual white blood cells which were necessary to fight the infection.

The University of Rochester Medical Center at https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=160&ContentID=35 explains succinctly:

“Your white blood cell count can be low for a number of reasons—when something is destroying the cells more quickly than the body can replenish them or when the bone marrow stops making enough white blood cells to keep you healthy. When your white blood cell count is low, you are extremely susceptible to any illness or infection, which can spiral into a serious health threat.”

One of those somethings could be multiple myeloma.

There’s another consideration here. As Chronic Kidney Disease patients, we have compromised immune systems. DaVita explained in SlowItDownCKD 2015:

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells us,

“…. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections….”

This is one great big ball of wax. While bone marrow replacement is one treatment and radiation another for multiple myeloma, the most often employed treatment is drug therapy. Here’s where the kidneys come into play again. In SlowItDownCKD 2012, I quoted myself because I felt the following was so important:

“You may need to take a lower dosage of whatever drug was prescribed or, perhaps, take it less often. If your kidneys  are  not  fully  functioning,  the  drugs  are  not  effectively being removed from your blood. It would be similar to willfully taking a drug overdose if you do not make your doctors aware of your CKD when they prescribe for you.”

Uh-oh. I need some help here. Healthline at https://www.healthline.com/health/cancer/multiple-myeloma-kidney-failure to the rescue!

“Kidney failure in multiple myeloma is a complicated process that involves different processes and mechanisms. The way this happens is the abnormal proteins travel to the kidneys and deposit there, causing obstruction in the kidney tubules and altered filtering properties. Additionally, elevated calcium levels can cause crystals to form in the kidneys, which causes damage. Dehydration, and medications such as NSAIDS (Ibuprofen, naproxen) can also cause kidney damage.”

This was difficult to write, so thanks for keeping me company as I struggled with it.

One final note. I blogged about Antidote, a clinical trial company, last year. You’ll find them on the blogroll, too. This Wednesday, they’ll be helping to celebrate Clinical Trials Day by hosting a Twitter chat from noon to 1 pm. The topic is storytelling for awareness and you (yes, you) are invited to join in. Use #research chat. For those new to twitter chats, you need to follow Antidote to join the chat. Their ‘handle’ is @antidote_me. I’d be there myself if I didn’t already have one of those specialists appointments that you have to wait months and months for. My loss.

Until next week,

Keep living your life!

Something Else I Didn’t Know

One of the members of a Facebook Chronic Kidney Disease support group and I got into a bit of give and take about last week’s blog. It started with one topic and, as conversations are wont to do, ended up being about something entirely different: mgus. This is what I ended up responding:

“I don’t know mgus, either. I think the only way I can be of any help to you is to suggest you speak with your renal nutritionist and make sure she knows you also have mgus. Sorry! Hmmm, maybe I should learn about mgus and blog about it.”

As the week went on, I realized there was no “maybe” about it. So let’s learn about mgus together.

According to my old time favorite The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362, mgus is:

“Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow.

MGUS usually causes no problems. But sometimes it can progress over years to other disorders, including some forms of blood cancer.

It’s important to have regular checkups to closely monitor monoclonal gammopathy so that if it does progress, you get earlier treatment. If there’s no disease progression, MGUS doesn’t require treatment.”

Whoa! Looks like we need a lot of backtracking here. Let’s start with monoclonal. We know ‘mono’ means one and the ‘al’ at the end of the word means of or about. Now let’s deal with the unknown: ‘clon’. Dictionary.com at http://www.dictionary.com/browse/clone tells us it’s really clone (which you’ve probably already guessed) and means:

  1. a cell, cell product, or organism that is genetically identical to the unit or individual from which it was derived.
  2. a population of identical units, cells, or individuals that derive from the same ancestral line.

Oh, clone… as in Dolly, the sheep back in Scotland in 1995. Got it.

And gammopathy? That ‘o’ in the middle is just a connective so we’re really dealing with ‘gamm’ and ‘pathy’. You probably already know ‘pathy’. The Free Dictionary at https://www.thefreedictionary.com/-pathy offers a few definitions.

  1. indicating feeling, sensitivity, or perception: telepathy.
  2. (Pathology) indicating disease or a morbid condition: psychopathy.
  3. (Pathology) indicating a method of treating disease: osteopathy.

Number two is what we need for our purposes.

That leaves us with ‘gamm’, which I thought was part of gamma considering the definition of the disease. The first medical definition in The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/gamma was helpful here.

“of or relating to one of three or more closely related chemical substances

  • the gamma chain of hemoglobin
  • γ-yohimbine

—used somewhat arbitrarily to specify ordinal relationship or a particular physical form and especially one that is allotropic, isomeric, or stereoisomeric (as in gamma benzene hexachloride)”

I’d have to agree if you’re thinking this is getting a bit too technical to continue down this particular road. Let’s go back to the disease itself and see what it may have to do with CKD. Hmmm, protein is mentioned in the definition and proteinuria can be a problem in CKD. Is that the connection?

We Are Macmillan, a cancer support group from England at https://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/pre-cancerous-conditions/mgus.html, tells us:

“People with MGUS make an abnormal protein, called a paraprotein or M-protein, which is found in the urine or blood.”

I see. This M-protein does show up in the urine.

That did it. I jumped right back to the Mayo Clinic and learned that Chronic Kidney Disease may be a complication of MSUG. But, then again, so may blood clots and bone fractures.

Feeling a bit frustrated, I thought maybe symptoms would be helpful. The University of Rochester Medical Center at https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=121 offers this list.

Symptoms of monoclonal gammopathies vary among these conditions, but can include:

  • Anemia or low red blood cells counts
  • Lack of energy (fatigue) or tiredness
  • Weakness
  • Pain in the bones or soft tissues
  • Tingling or numbness in the feet or hands
  • Infection that keeps coming back
  • Increased bruising
  • Bleeding
  • Weight loss
  • Headache
  • Vision problems
  • Swelling
  • Mental changes

Anemia and fatigue may also be symptoms of CKD. Yet, both MSUG and CKD are often symptomless.

To complicate matters, there’s also a disease called monoclonal gammopathy of renal significance. That’s when the monoclonal gammopathy causes the CKD. It sounds like this was not the case with the reader. She just happens to have both monoclonal gammopathy and CKD.

I’m going to switch gears here. I received an email from the American Kidney Fund (AKF) asking me if I would write about their upcoming webinar on Depression. Who could say no to that request?

“Each month, AKF hosts an educational webinar for kidney patients and their loved ones about living well with kidney disease…. Experts cover important topics and there is always a live Q&A session afterwards where viewers can send in their questions. You can find more information about the upcoming webinar here: http://www.kidneyfund.org/training/webinars/

Our next webinar for May 23rd is Depression: the overlooked complication of kidney disease.”

I’ve watched some of the webinars and found them helpful. I think you will, too.

You know that promise I made about separating my unwieldy The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books – SlowItDownCKD 2013 & SlowItDownCKD 2104 – with larger print and a more comprehensive index? You know, just as I did when I separated The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 (now ‘retired’ as a book no longer in print is called) into SlowItDownCKD 2011 & SlowItDownCKD 2102. I am proud to announce that I’ve actually started that process.

For a retired person, my calendar sure is full and busy seems to be my middle name. I vow to have the SlowItDownCKD series completed (until it’s time to publish SlowItDownCKD 2018, that is) by the end of the summer.

Happy Mother’s Day this coming weekend. I’m going to enjoy the fact that it’s my step-daughter’s first…. and hope we get to meet The Little Prince sooner rather than later. Living in two different states was never this hard before his birth.

Until next week,

Keep living your life!

Black and Blue is Back

I looked in the mirror and what did I see? Black and blue under my eyes staring back at me… and then I realized I’d been seeing them for ages. Hmmm, what could be causing them?

I researched and researched and researched and didn’t really find any answers that relate to me, but did find some that do relate to Chronic Kidney Disease. The biggie was anemia. Let’s go all the way back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Anemia: A blood disease in which the number of healthy red blood cells decreases”

Need some basics? In SlowItDownCKD 2011, it was explained that the red blood cells are the ones that contain the hemoglobin which carries oxygen to your cells. There’s a bit more about hemoglobin in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. There we learned that it’s a protein and that it is responsible for the red color of your blood.

Well, what’s this got to do with CKD? This explanation from The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf which appeared in SlowItDownCKD 2015 will explain:

“Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

A little more about erythropoietin from the Lung Institute at https://lunginstitute.com/blog/oxygen-kidneys/:

Red Blood Cell Regulation: When the kidneys do not receive enough oxygen, they send out a distress signal in the form of erythropoietin, a hormone that stimulates bone marrow to produce more oxygen-carrying red blood cells.”

Uh-oh, what happens if we have fewer red blood cells – or anemia? I popped over to SlowItDownCKD 2016 to find the answer.

“If you have fewer red blood cells, you are carrying less oxygen to your vital organs… which are the following according to livescience at http://www.livescience.com/37009-human-body.html

‘The human brain….The human heart…. The job of the kidneys is to remove waste and extra fluid from the blood. The kidneys take urea out of the blood and combine it with water and other substances to make urine. The liver….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.’

Okay, so the lungs are responsible for gathering oxygen from the air (for one thing) and healthy kidneys produce red blood cells to carry oxygen to your vital organs (again, for one thing). CKD reduces the oxygen you have since it reduces your red blood cell production….”

Let’s get back to the seeming black and blue under our eyes. While Dr. Mercola is not necessarily my medical hero, I did find an interesting explanation on his website at https://articles.mercola.com/what-causes-dark-circles-under-eyes.aspx:

“Some of the causes believed to contribute to hyperpigmentation around the periorbital area are temporary and resolve after the irritant has been removed. Possible temporary and permanent triggers for periorbital hyperpigmentation include….”

Sun exposure Genetic pigmentation Dermal melanocytosis
Allergic dermatitis Contact dermatitis Edema (swelling)
Drugs Aging Hormones

According to the Merriam-Webster Medical Dictionary, periorbital means “of, relating to, occurring in, or being the tissues surrounding or lining the orbit of the eye, “ and hyperpigmentation is “the production of excess melanin causing dark spots on the skin.” This is not exactly what we were looking for, but notice the last item in the third column: hormones. Erythropoietin is a hormone.

Maybe it has to do with the reduction of red blood cells which means less hemoglobin which means less red color. To my way of thinking, that means your veins would show up as blue. I’m conflicted here. I can’t decide if that’s just plain silly since I’ve never seen a red vein through my skin or if this might be the germ of a thought to be expanded upon.

EyeHealthWeb at https://www.eyehealthweb.com/dark-circles-under-eyes/  lists many possible causes of these black and blue or dark rings under our eyes.

  • Heredity. Dark circles under the eyes can appear in childhood, and are often an inherited trait. Some children will outgrow them, but others will not.
  • Allergies. Nasal congestion can dilate the blood vessels that drain from the area around your eyes, causing them to darken.
  • Sleep deprivation is the most common cause, and the easiest to prevent, but …
  • Oversleeping can also cause dark eye circles.
  • Eczema
  • Stress
  • As we get older, our skin becomes thinner.
  • Iron deficiency can prevent the blood from carrying sufficient oxygen to eye tissues.
  • Minor trauma that causes the appearance of a black eye 

Additional causes for dark circles under your eyes:

  • Crying
  • Lifestyle. Excessive smoking or drinking can contribute to under-eye circles. Also, people who drink too much coffee or who use cocaine or amphetamines may have difficulty getting enough sleep.
  • Fluid retention, as may occur with pregnancy or weight gain.
  • Skin pigmentation abnormalities. The skin around the eyes is thinner, which is why your blood vessels are more readily visible through it.
  • Excessive exposure to the sun. Sun exposure encourages your body to produce more melanin.
  • Age. As we get older, we lose some of the fat and collagen surrounding our eyes. This loss, combined with the thinning of our skin, magnifies the appearance of dark eye circles.
  • Mononucleosis can cause the eyes to appear puffy and swollen. This is due partly to the fatigue that people feel when they are suffering from it, and partly because this illness causes a yellowing of the eyes and the skin around them (this is called jaundice).
  • Periorbital cellulitis. This is a bacterial infection of the eyelid or eyelids. If it is promptly treated with antibiotics, however, it is nothing to worry about.
  • Excess salt in the diet causes fluid retention throughout your body—including underneath your eyes.

Gulp! Iron deficiency (which may be a kind of anemia), excessive smoking or drinking, certain drugs, excess salt. Sound familiar? These are some of the things we’re told to avoid as CKD patients.

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!

It’s the Long Promised Sulfa Blog!

Since I mentioned sulfa drugs in a blog a few weeks ago, I’ve been asked some questions, including one wanting to know if these drugs could have caused a particular reader’s CKD.  Although I used the British spelling, I also wrote about my experience with sulfa drugs in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (page 90):

I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a Book Coverweek and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

All right, let’s go back to basics, first.  The Medical Dictionary at http://medicaldictionary.thefreedictionary.com/sulfa+drug defines sulfur drug as

“Any sulfur-based antibiotic, in particular sulfonamides.”

sulfaGreat. Now we just need to know what sulfonamides are.  The same dictionary tells us these are

“medicines that prevent the growth of bacteria in the body”

and that they are frequently used with urinary tract infections. Yet, there’s also a warning that people with kidney disease should be sure to warn their doctors about their kidney disease should one of these drugs be prescribed.

Well, why do you need to avoid such medications with CKD? As you already know, compromised kidneys don’t do the job they were meant to do as well as they did before we had CKD when it comes to eliminating drugs from our bodies.  The kidneys are the organs that clear this particular drug from the body, not the liver (which is another organ that can clear drugs from your body). That means the drug may build up… and cause problems.

Here’s one of those problems from MedicineNet.com at http://www.medicinenet.com/sulfonamides-oral/article.htm#what_are_the_side_effects_of_sulfonamides,

“Other rare side effects include liver damage, low white blood cell count (leucopenia), low platelet count (thrombocytopenia), and anemia. Formation of urinary crystals which may damage the kidney and may cause blood in the urine. Adequate hydration is needed to prevent the formation of urinary crystals.”

We are already prone to anemia since we’re not producing as many red blood cells as we could (another job our kidneys have). Sure, adequate hydration may prevent these crystals, but just how much is adequate.  After all, as CKD patients, we do have fluid restrictions.

As for actually causing kidney damage, yes, sulfa drugs can do that. As The National Kidney Foundation phrases it at http://www.kidney.org/atoz/content/kidneysnottowork.cfm:NKF-logo_Hori_OB

“Other things that can damage the kidneys include kidney stones, urinary tract infections, and medications or drugs.”

 An allergic reaction to sulfa drugs can also cause kidney damage.  Allergies.About.Com at http://allergies.about.com/od/medicationallergies/a/sulfa.htm reports:

“People with sulfa allergy may also develop a type of hepatitis, and kidney failure, as a result of sulfa medications.”

However, they are careful to point out that this is an uncommon reaction, occurring in less than 3% of users.

The antibiotics Bactrim and Septra are two of the most common sulfa drugs prescribed today.  Most often, they’ll be prescribed for a urinary tract or bladder infection.  What makes it harder to pinpoint which drugs are sulfa drugs is that they don’t always have ‘sul’ in their name.

That’s also what makes it so important for you to impress upon your physician that you

the medical alert plate1. do have CKD and

2. will not be taking any sulfa drugs

Wearing a medical alert bracelet might help you remember to be downright insistent that you will NOT be taking any sulfa drugs.

The emergency room doctor did try to speak with my nephrologist before prescribing the drug for me, but couldn’t get through… a situation we’re all familiar with.  He was not a specialist and made a judgment call that sulfa drugs would be all right for me.

Yet, when I finally got a response to my own calls to the nephrologist, he was horrified.  This guy was not an emotional man so this really put me into a panic, especially since CKD was so new to me and I didn’t really know the rules yet.

Some blogs just flow and some are hard to write.  This was one of the hard ones.  I spent more time trying to tease information from the internet and my source books than writing.  I gather this is neither a popular topic nor one that is usually visited.  That makes me even more hopeful that I’ve answered your questions about CKD and sulfa drugs.NYC

I left NY in 2002, but we’re going back for a visit soon.  Nima, my NY daughter, will be taking me to High Line and The Urban Museum.  Are there any other new places you think we should visit?  While I lived there, the city was our playground… but it’s been a dozen years.

Until next week,

Keep living your life!

I’m Tired.

baby-shots-5I’m tired.  I’m almost always tired.  That is my most prevalent complaint lately.  And why?  Because I have Chronic Kidney Disease, Stage 3A. I thought I remembered this particular symptom doesn’t appear until dialysis starts – at stage 5 – so I decided to re-research my research… and surprised myself with the results.

Just in case you don’t remember, I retired from teaching at the community college last February (right after my 66th birthday) and from acting a month later. Two careers down and a year older, I’m still tired. True, I do blog every week and work on SlowItDown.  However, it’s still two careers down.

I was becoming concerned.  According to Donna D. Ignatavicius, MS RN, and M. Linda Workman, Ph.D, authors of Medical-Surgical Nursing: Critical Thinking for Collaborative Care, I shouldn’t be.  They explain that patients with early symptoms of chronic renal failure may complain of a general feeling of illness and that lack of energy and fatigue are often reported without any identifiable cause.

By the way, the book is available on Amazon, but I cannot recommend it yet since I just ordered it.  More on that after I read it. Okay, so maybe my CKD hadn’t advanced and maybe I hadn’t developed diabetes. Maybe it was just the stage of CKD I was in.

I wanted to check with my old standby, The Mayo Clinic.  Their website told me: “Signs and symptoms of kidney disease may include:Location of Kidneys

  • Nausea
  • Vomiting
  • Loss of appetite
  • Fatigue and weakness
  • Sleep problems
  • Changes in urine output
  • Decreased mental sharpness
  • Muscle twitches and cramps
  • Hiccups
  • Swelling of feet and ankles
  • Persistent itching
  • Chest pain, if fluid builds up around the lining of the heart
  • Shortness of breath, if fluid builds up in the lungs
  • High blood pressure (hypertension) that’s difficult to control”

You can read more about these symptoms at: http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/symptoms/con-20026778

Wait a minute!  Where in heaven’s name was loss of appetite when you needed it!  Here I am with CKD, aging, exercising, following the renal diet, and not losing weight. I realize that sounds pretty shallow.  Let me explain.  My weight has always been a problem.  I’m not saying I WANT another symptom of CKD, but since I have CKD anyway, I would have preferred that symptom.

hiccupsI also had never questioned why I have hiccups so often.  Bear thought it was that I ate too fast, so I slowed down. (Hey, almost 45 years of running up to the fourth floor cafeteria, waiting in line, and then bolting down your food so you can get to the restroom and drop off your reports in the office three flights back down before teaching your next class doesn’t dissipate that quickly.  Long term habits….)

And why is fatigue a symptom of CKD in the first place?  I found the following at: http://www.kidneyabc.com/ckd-treatment/991.html (Which looks like it might just be a Chinese herbal site; it wasn’t quite clear.): “Fatigue in CKD (Chronic Kidney Disease) is most often caused by anemia in which the count of red blood cells are lower than normal. As red blood cells distribute oxygen to body tissues and cells, a shortage of oxygen can cause fatigue. Anemia begins in early stage of CKD, and tends to get worse as renal function decreases and less erythropoietin (EPO) is produced by kidneys.”

new blog shotThis is something that I explained in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I’ve been diagnosed with non-anemic low iron levels. Well, it’s nice to know I’m not anemic, but the low levels of iron produce the same fatigue. Why?

The National Kidney and Urologic Diseases. Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains: “Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidney, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in my book, “…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension. “

That was thought to be true when I researched for the book over three years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.flu

So, what can you do for this fatigue?  I went to the same Chinese herbal site because their recommendations were simply so logical.

“Regular exercises have many benefits for stage 3 CKD patients:

Boost your energy.

Improve your immune system.

Alleviate edema.

Lower high blood pressure.

Aerobic exercises such as walking, jogging, dancing, swimming, etc. are preferred. And remember to avoid strenuous exercises.”

How can you argue with that?  I couldn’t, especially since dancing is included!

happy birthdayThank you all for your birthday wishes.  I like to respond to each of you individually and hope I haven’t missed anyone.  Let me know if I have. It was a lovely day with the kids, and neighbors helping me celebrate, as well as my long distance friends emailing, snail mailing, Facebook inboxing, and texting.  I truly feel cherished by those in my communities.

I also believe I’ve gotten across to the French division of Amazon by writing in English and letting them translate it instead of giving in to my own misguided insistence upon using my fractured French.  Take a look for yourself by going to Amazon’s website, scrolling down to the bottom of the page where the different countries of operation are listed, hitting France, and inputting the title of the book – in English.

I’m tired… time to take a rest.

Until next week,

Keep living your life!

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.Book Cover

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

510smylYevL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? 41nNk5SdqIL._AA160_What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

51nUIkG8kSL._AA160_Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and 41jxZoYLGzL._AA160_updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?sugar

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

Deodorant Doubts

I’ve been playing around with the idea of a newsletter concerning which beauty and hygiene products are safe for Chronic Kidney Disease patients. (Free feel to ‘steal’ the idea.)  Here’s why: every day I use deodorant and every time I pick up the container I’m reminded of the warning on it, “Ask a doctor before use if you have kidney disease.”warning

I did just that about three years ago. At first, my nephrologist was seemingly annoyed at the question, almost as if no one had ever asked him that before. (Is that possible?) I imagine he had his P.A. check a deodorant container because he did have her call me back to say that was only for late stage CKD.  Notice there’s no explanation in that message and, yep, this is the nephrologist I no longer see.

Last week, I did the marketing as I usually do lately since Bear is waiting for surgery on his foot and having a hard time walking much less carrying.  Deodorant was on the list I’d written. I picked up one brand, then another, and a third.  I decided to look at all the brands available and they all had that same warning. Why had I never researched this before?

Good question.  I’m a firm believer in it’s never too late.  Rather than a discussion of which brands are safe for those of us with kidney disease, I’ll be going into the mechanics (if that’s the right word) of deodorant and kidney disease.

exercisingI found a clear explanation of just what function deodorant serves. “Contrary to popular opinion, most deodorants do not just cover up odor with fragrance. They actually have antiseptic properties that work to kill bacteria, which is what causes odor to begin with.” Thank you ww.essortment.com/health-beauty-deodorant-vs-antiperspirant-60155.html.

According to Dr. Nathalie Beauchamp in a January, 2010, article at http://EzineArticles.com/5287990, the culprit is, “Propylene Glycol – found in thousands of cosmetic products – to help moisturize. It is also an ingredient used in anti-freeze and brake fluid, so it’s no surprise that it could cause liver abnormalities and kidney damage.”

I was surprised since I’d always assumed it was the aluminum in the deodorant that was the problem.  It made sense to me that, since American women tend to shave their underarms, ingredients are more easily absorbed into the skin, build up in the body, and then cannot be easily excreted by already compromised kidneys.  Although, according to the article above, aluminum may contribute to Alzheimer’s. Apparently, it builds up in the brain. Shows you what I know… or thought I know!

But then I found The American Association of Kidney Patients post from a 2008 article by Dr. Nathan Levin in RENALIFE, “Most of the antiperspirants and some deodorants contain aluminium (Al), which is absorbed by the skin (Flarend et al – Food Chem Toxicol, 2001). In healthy people, it gets eliminated by the kidney, but for people with reduced function, Al will accumulate in the body. Albeit unusual, this could lead to dementia (Carpenter et al. – Int J Occup Med Environ Health, 2001), anemia and bone disease (Jeffery et al. – J Toxicol Environ Health 1996).”aluminum

So now we know the build-up of aluminium is also a problem.  This goes right back to compromised kidneys not being able to eliminate the chemical that enters our bodies via the skin.  As mentioned earlier in this blog, women are at risk since they shave their underarms (leaving very small cuts in the skin), but men are also at risk.  The chemical is applied to the skin, is absorbed, and builds up.

I did find a reason for the warning against antiperspirants, but keep in mind that these actually close the pores through which sweat is exuded and are not quite the same as deodorants which work on bacteria once the sweat has already been exuded.

In general, the new warning statement is meant for patients with kidney disease who may not be able to excrete the low levels of aluminum in the body that may result from antiperspirant use. This would be individuals with advanced chronic kidney disease (corresponding clinically to stage 4 or stage 5 chronic kidney disease1). Such individuals have approximately 30% or less of their original normal kidney function.  If you have any questions about whether you have such a chronic reduction in your kidney function, you should discuss it with your doctor.”

The entire warning and discussion of it can be found at: http://www.asn-online.org/facts_and_statistics/Antiperspirant%20Warning%20QAs.pdf which is on the website of the American Society of Nephrology.

If you’d like to do more research yourself, take note that I got very few hits when I used ‘Chronic Kidney Disease and deodorant,’ but quite a few with ‘CKD and deodorant.’

On another note entirely, I’ve been talking quite a bit about SlowItDown, my project to bring CKD education by trained educators on a monthly basis for free to any community that needs it.  This is all part of my passion to spread this information, as are the Facebook pages and twitter accounts for SlowItDown and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Come to think of it, so is this blog.Book Cover

I did tell you that when I researched inexpensive CKD information for readers in Germany and India who requested it, my book was the first item on both lists, right?  I’m pretty sure I told you that when a nephrologist from India contacted me for ways to get the information into his destitute patients hands, I figured out I could send him the first issues of the blog – which were the book – for him to translate and leave in nephrology offices and clinics for the patients to read or have read to them.

Amazon is starting a really helpful program for their Kindle. (By the way, although I am an aficionado of REAL books, I also have already worn out one Kindle.) If an author chooses, you can buy a greatly reduced in price edition of the digital book when you purchase a print copy of the book.  I chose it. As it stands now, the print book is $12.95 and the digital edition is $9.95.  Once the program is in place, the print book will still be $12.95, but the digital edition you can buy when you purchase the print book is only $2.95.  Many thanks to Amazon for yet another way to get the word about CKD out to the people who need it.Kindle

Until next week,

Keep living your life!

Guilty Pleasures

I read this phrase somewhere and that’s what today blog is: my guilty pleasure.  It’s my pleasure because my mission is to keep informing about Chronic Kidney Disease and it’s my guilt because I indulge myself in using my own life experiences to ease into this information.

downloadI did promise to write about our wedding reception today.  The first thing that comes to mind is music, lots of it.  Abby Wegerski, Nima Rosensfit (my biological daughters) and Michelle Davis (Cheryl’s daughter and my daughters’ cousin) – all professional singers at one time or another – regaled us with “Going To The Chapel of Love.”  My Arizona buddy, Karla Lodge (another professional singer) blew us away with her own solo.

I don’t know how it happened, but I sang “Hava Nagila,” in a full, clear voice.  That’s odd because I gave up singing since I could no longer stay on key and my voice had become thin and reedy.  It certainly wasn’t that way at our wedding.

One of our guests was Robert Arthur who I met when he was a student in one of the writing classes I taught at Phoenix College almost a decade ago.  We played his original album during the reception when no one was singing.GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

People who didn’t know each other started to interact and I loved it.  At one point, I noticed our best man – Michael Payne – in a tuxedo having a discussion with an unshaven young man wearing worn jeans and an ill-fitting shirt.  The dichotomy tickled me.

Karla, my Staten Island buddy Janet Le, and Michelle, who I still think of as my niece (despite no blood relationship) handled all the kitchen duties so I could just “be the bride.”  Michael made a beautiful toast. So much happened, but it reminds me of child birth; I don’t remember very much of it!download (1)

So let’s get to the heart of today’s blog: pregnancy when you have Chronic Kidney Disease (like the way I slid into that?).  According to the physicians’ journal BMJ,

“Pregnant women with chronic renal [kidney] disease adapt poorly to a gestational [pregnancy] increase in renal blood flow. This may accelerate their decline in renal function and lead to a poor pregnancy outcome.”

That blatantly gives you the bad news first, but it’s not the end of any thought of pregnancy with CKD. You can read the fairly technical, yet highly informative article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213870

The following is a 1980 view of pregnancy’s effect on kidney disease.  Keep that date in mind since it is 33 years ago:

  • Increase in proteinuria [protein in the urine]
  • risk of preeclampsia [hypertension (a sharp rise in blood pressure), albuminuria (leakage of large amounts of the protein albumin into the urine) and edema (swelling) of the hands, feet, and face]
  • worsening of anemia [low red blood cell level]
  • lessening of renal function.

While I’ve paraphrased, it’s clear pregnancy with ckd was frowned upon all those years ago.  The study I found the information in can be located at this address: http://webdoc.nyumc.org/nyumc/files/med_nephrology/attachments/Pregnancy%20and%20CKD.pdf

Okay, lots of definition in the above outdated article.  Let’s see what thoughts about the subject are fairly current.

Pregnancy and Chronic Kidney Disease: A Challenge in All CKD Stages. That’s the title of an article I found at: http://cjasn.asnjournals.org/content/5/5/844.full.  The word ‘challenge’ caught my eye, so I did my best to understand the article which summarized information garnered between 2000 and 2009 about the subject.  According to the article, more cases of CKD were discovered during pregnancy than had been expected.  Of course, I immediately wondered if this were a new way of diagnosing CKD.  Of course, I knew I could not be tested this way.  Of course, you know I’m kidding.

baby-shots-5“Chronic kidney disease complicates an increasing number of pregnancies, and at least 4% of childbearing-aged women are afflicted by this condition. Although diabetic nephropathy [kidney disease from long term diabetes] is the most common type of chronic kidney disease found in pregnant women, a variety of other primary and systemic kidney diseases also commonly occur. In the setting of mild maternal primary chronic kidney disease (serum creatinine <1.3 mg/dL) without poorly controlled hypertension, most pregnancies result in live births and maternal kidney function is unaffected. In cases of more moderate and severe maternal primary chronic kidney disease, the incidence of fetal prematurity, low birth weight, and death increase substantially, and the risk of accelerated irreversible decline in maternal kidney function, proteinuria, and hypertensive complications rise dramatically. In addition to kidney function, maternal hypertension and proteinuria portend negative outcomes and are important factors to consider when risk stratifying for fetal and maternal complications. In the setting of diabetic nephropathy and lupus nephropathy [kidney inflammation caused by lupus], other systemic disease features such as disease activity, the presence of antiphospholipid antibodies [antibodies that might be in your blood and might increase the incidence of blood clotting and pregnancy termination], and glycemic control [eating low carbohydrate foods to help manage diabetes] play important roles in determining pregnancy outcomes. Concomitant with advances in obstetrical management and kidney disease treatments, it appears that the historically dismal maternal and fetal outcomes have greatly improved.”

The above is taken from Chronic Kidney Disease and Pregnancy: Maternal and Fetal Outcomes by Michael J. Fischer at: http://www.sciencedirect.com/science/article/pii/S1548559507000055, which is dated April 2007.  I included the entire paragraph since it makes so clear that pregnancy outcomes “have greatly improved.” And that was six years ago! By the way, I added the definitions in brackets.

I seem to be having trouble finding anything more recent, so I’ll summarize what I have found:

  1. Speak with your nephrologist about a high risk team before you become pregnant, if possible.
  2. Pregnancy in early stages of CKD has better outcomes.
  3. CKD may be discovered during pregnancy.
  4. Pregnancy is not an impossibility if you have CKD.kidneys5
  5. Treatment in pregnancy in CKD is continually improving.
  6. The risks are caused by increased renal blood flow along with other factors.

Considering my age, I’ll take my mother’s advice: “Better you than me.”  Don’t let CKD cause you to miss out on one of the wonders of life, but don’t be foolish.  Take care of that baby you intend to bring into the world by taking care of its mother.  Reminder:  giving birth to a baby is not the only way to become a mother.

Until next week,

Keep living your life!