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!

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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Dare You Have Your First Mother’s Day?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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 Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …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 kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

The Breath of Life

Valentinr'sHere’s hoping you had a wonderful Valentine’s Day whether your Valentine was someone else or yourself.  I spent years celebrating myself in various ways: an afternoon at the bookstore, an evening dancing at a new dance hall, even simply coffee with a friend I hadn’t seen in a while, and enjoyed all of it.

This year I decided to celebrate with a book giveaway contest and was thrilled when one of the winners told me she’d never won anything before.  What better gift could I give her than a new experience? So that you can see SlowItDownCKD is a family affair,  the link for the video of the ‘drawing’ is http://www.youtube.com/watch?v=oQZSou8-Nc8. Our wondrous cancer free dog, sweet Ms. Bella, chose the winners while my even sweeter husband, Bear, did the videoing and helped me see what I couldn’t.2015-04-18 21.39.40

I was a bit sad to discover my Kidney Walk days are over (Thanks, neuropathy, you meanie you.), but I’ll be celebrating National Kidney Month in a different way this year and hope you’d like to join me.  The National Kidney Foundation of Arizona at https://azkidney.org/ will be hosting their joint conference with The Cardio-Renal Society on March 11 & 12.  I’ll be attending on the 11th.

Kidney ArizonaSome of you have already asked if you can accompany me.  Of course you can!  Here’s the address for the conference: http://www.swnc.org/. Register there and then contact me at SlowItDownCKD@gmail.com or via a comment on the blog and we can arrange to meet there.

There have been so many medical issues since last week that I wasn’t quite sure which one to use as the topic of today’s blog, so I decided to use the first one that came up chronologically.  That was the pulmonologist. When I was in New York back in October, I experienced some shortness of breath and a burning sensation in my chest while walking at the typical New Yorker’s pace (Oh, how I have forgotten what that’s like.) and climbing stairs to the subway and elevated train two, three, or four times a day.NYC

When I told the pulmonologist, who I was originally seeing for sleep apnea problems, he ordered a lung x-ray be completed two weeks before my appointment.  My lungs were perfectly clear. Yay! Hurdle number one passed.

Next, a breathing test.  While I wouldn’t exactly call this fascinating, it was interesting… and the technician administering it made it even more so as she explained what we were doing each step of the way and, more importantly to me, why we were doing it. I sat in a glass box while she alternately fed oxygen into my lungs or asked me to empty my lungs of the same by forcibly exhaling into a tube.

WebMd at http://www.webmd.com/lung/copd/diagnostic-tests?page=3 has an easy to understand explanation – the kind I like best – of these tests.glass booth

  • Nitrogen Washout: You breathe pure oxygen, and the air you breathe out is collected and analyzed for nitrogen content.
  • Helium Dilution: You breathe a gas mixture of helium and oxygen.
  • Body Box: This is the most accurate of these types of tests. You sit in an enclosed chamber, made of glass or clear plastic and perform a series of small panting breaths. While very accurate, the equipment requires specially-trained technicians to operate it.

My results were not perfect, but my lung capacity was 97% which was just fine for my age.  There goes that qualifier again: for my age. It’s hard for me to accept that time will have an effect on your body, although it’s perfectly logical. Although this is not something terrible, there have been so many borderline issues lately due to my age.

What is itOf course you’re wondering why I’m even writing about this in a Chronic Kidney Disease blog, right? To that end, I took a little jaunt into What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to clarify the issue for us. The first mention of the lungs was in an explanation of your nephrologist’s ROS.

“Then came the Review of Systems [ROS]. My primary care physician asked me questions about my constitution, the functional habits of my body such as weight changes, fever or chills. The cardiac part of my health was covered with questions about chest pain or palpitations. Finally, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. I found my answer in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, in an inquiry into erythropoietin, or EPO.Digital Cover Part 2 redone - Copy

“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 kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

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. Add unhealthy lungs that gather less oxygen and you’re in for a very tired time.

Keep breathing, keep enjoying, and keep on top of your health.DIGITAL_BOOK_THUMBNAIL

Until next week,

Keep living your life!

Running, but Getting Nowhere

First things first, as usual: Happy Kwanzaa to those who celebrate this week long holiday. For those of you unaware of this particular holiday, Dictionary.com tells us it is

“a harvest festival celebrated from Dec. 26th until Jan. 1st in some African-American communities.”

AudreI was introduced to it by the wondrous Audre Lorde, my neighbor, best friend, and the poet laureate of NYS back on Staten Island in the ‘80s. While I miss her terribly since her death, what’s she’s taught me is part of who I am today.  Thank you, Audre.

Let’s run up to the end of 2015 and restless leg syndrome. (Well, that was an awkward transition, wasn’t it?) I have a new reader who is confounded by it, but can’t get a doctor’s appointment soon enough for some immediate answers at this time of year so let’s see what we can find out for him.

According to The National Institute of Neurological Disorders and Stroke (Don’t let that title scare you; this is just where I went for information) at http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them.”

While that makes sense, it doesn’t explain why a Chronic Kidney Disease patient might develop RLS. I went to Medscape.com at http://www.medscape.org/viewarticle/707972_4 for some sort of explanation.

“A disturbance of dopaminergic transmission has been postulated to underlie the development of idiopathic RLS, but the increased incidence in CKD might reflect hyperphosphatemia or iron deficiency.”

Whoa, Nellie (as my father used to say)! Let’s slow this down a bit.  I can see that “hyper” means over, and “phosphate” has to do with phosphorous, but how do you put it all together? MedicineNet.com did that for me.

dairy“An elevated level of phosphate in the blood. Higher-than-normal levels can be caused by ingestion of phosphate-rich foods, such as dairy products, or by kidney failure.”

Notice that kidney failure is not the only cause. So does that mean my new reader is eating too much high phosphorous food?  I don’t know. Dwayne, are you?

Being a newbie to all this, he may need a list of high phosphorous foods. Luckily, there is one in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages

ale                                                     beer

chocolate drinks                            cocoa

drinks made with milk                 dark colas

canned iced teas

 

Dairy Products

cheese cottage cheese                  custard

ice cream                                        milk

pudding                                          cream

soups                                               yogurt

 

Protein

carp                                                  crayfish

beef liver                                         chicken liver

fish roe                                            organ meats

oysters                                             sardines

 

Vegetables

dried beans and peas                   baked beans

black beans                                    chick peas

garbanzo beans                             kidney beans

lentils                                              lima northern beans

pork ’ n beans                                split peas

soy beans

 

Other foods

bran cereals                                   brewer’s yeast

caramels                                         nuts

seeds                                               wheat germ

whole grain products

Does this help any, Dwayne? Let us know.

Next question: What’s so bad about having high phosphorous levels in the blood when you have CKD?

Back What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the answer to that one.

What is it“This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.”

The other possible cause of RLS in CKD (alphabet soup, isn’t it?) is iron deficiency. I wrote about that a bit in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“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 kidneys, 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 What Is It and How Did I Get It? Early Stage Chronic Kidney

‘…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.’

Digital Cover Part 2 redone - CopyThat was thought to be true when I researched for the book over three  [now almost four] 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.”

Be certain to make that appointment with your new nephrologist, Dwayne.  After reading today’s blog, write a list of questions for the doctor and have someone with you during your appointment to be sure you ask all your questions and understand the answers. Keep us posted.

Mini-contest. I have one lonely copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 hanging around my office all by itself, just looking for a new home.  Be the first to comment on today’s blog and you’ll have yourself a new book.

Wow! Only three days left in 2015.

Until next year,

Keep living your life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

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!

EPO Good, No, EPO Bad

In preparing for tonight’s TwitterChat, Mandy from Libre asked me about any medications I’d like to mention.  I immediately thought of EPO. I remember when I was first diagnosed and complained of fatigue, my nephrologist at the time talked about receiving EPO intravenously.  I think he said twice a month.  And I was horrified.  I didn’t know why; I just was.  It wasn’t the needle because I was used to that already from all the blood tests CKD patients take and the IVs I’d had for various procedures.  It just felt wrong, wrong way down in my gut.  Being a great believer in things happening for a reason whether we know the reason or not, I refused.  And then I refused again.  After reading the two articles from which I’ve taken excerpts for today’s blog, I’m glad I did.

Blood protein EPO involved in origin and spread of cancer

[PRESS RELEASE 5 December 2011] Researchers at Karolinska Institutet have demonstrated that a growth hormone, PDGF-BB, and the blood protein EPO are involved in the development of cancer tumours and that they combine to help the tumours proliferate in the body. These new preclinical findings offer new potential for inhibiting tumour growth and bypassing problems of resistance that exist with many drugs in current use. The results are published in the scientific journal Nature Medicine.
       

Yihai Cao Photo: John Sennet

Angiogenesis is the formation of new blood vessels from pre-existing ones, and is one of the most important research fields in the treatment of such diverse conditions as cancer, metastases, obesity, heart disease, stroke, diabetes and chronic inflammation. The process is also important in healthy individuals for wound healing, the menstrual cycle and other normal processes. Professor Yihai Cao and his team are researching into angiogenesis and its links to cancer and other diseases, and in the present study show the significant role played by a growth factor, PDGF-BB.

“EPO has several functions,” says Professor Yihai Cao. “It produces more blood and stimulates angiogenesis, and we have revealed the underlying mechanism. It also stimulates tumour angiogenesis by directly stimulating the proliferation, migration and growth of endothelial cells and their ability to form the so-called epithelial tube. PDGF-BB promotes the stimulation of extramedullary haematopoiesis, enlargement of the liver and spleen, which increases oxygen perfusion and protection against anaemia.”

The introduction of PDGF-BB in mice thus boosts erythropoietin production and the haematopoietic parameters. In addition, EPO may directly act on tumor cells to promote their growth and metastasis.

You can find the entire article at:  http://ki.se/ki/jsp/polopoly.jsp?l=en&d=130&a=133831&newsdep=130&utm_source=twitterfeed&utm_medium=twitter . It is from Nature Medicine AOP 4 December 2011

Then I found a blog written by a doctor as a patient. This is part of that Wednesday, December 07, 2011 blog. You can read the entire blog entry at:  http://www.typepad.com/services/trackback/6a0133f61818b7970b0162fd805711970d

EPO: Lighting the Fires of Cancer

By Peter Laird, MD

Erythropoietin (EPO) is a natural hormone that mediates the production of red blood cells (RBC’s) that is primarily produced in the renal cortex and small amounts in the liver. Studies over the last decade evaluated the effects of  EPO in diverse populations at risk of anemia outside of the renal dialysis patients, especially in patients undergoing chemotherapy for a variety of cancers. Unfortunately, these studies revealed adverse survival with more rapidly progressive cancers and shortened survival. In addition, in the CKD population, patients were more likely to experience cardiovascular events and death bringing the CHOIR study to an early close as well.  The TREAT trial followed shortly with a higher risk of stroke for patients treated with EPO for CKD related anemia.

Many patients sustained with EPO for years on dialysis vocally protested the new FDA labelling changes and the removal of minimum Hb levels in the QIP. Despite the increased risk of cardiovascular outcomes with EPO and the suspected increased cancer risk for chemotherapy trials, the correction of anemia for many patients overcame the potential risks. However, a new study highlighed by Gary Peterson of RenalWEB sheds light on the role of EPO not only in promoting cancer, but it is actually involved in the development of cancers as well:

PDGF-BB modulates hematopoiesis and tumor angiogenesis by inducing erythropoietin production in stromal cells

As a cancer survivor in addition to my IgA nephropathy and dialysis, I have been very leery of EPO right from the time I first started on dialysis in 2007. My first confrontation with my health care team at dialysis came about when I refused to continue EPO shortly after beginning dialysis. In retrospect of current guidelines, I never needed EPO with a Hb over 12.0 with only iron infusions alone. The issue of adverse cardiovascular outcomes and now this new basic science information that EPO is involved in cancer formation leaves dialysis patients with hard choices. EPO prevents the need for blood transfusions and their associated complications, but at what price?

This brings up the subject of advocating for yourself.  You do NOT need to accept what a doctor tells you or recommends to you just because you are not a doctor and s/he is.  Refuse (unless it’s an emergency) and go home and research…or get a second opinion…or call another patient you trust to suggest another way of finding out if you do need this whatever it is you’re not comfortable with.

On the book front, you already know about tonight’s TwitterChat at 8-9 EST at WhatHowEarlyCKD, courtesy of Libre Clothing.  You do know about that, don’t you?  Come join us.  Bring your questions, comments and friends.  Let’s make this a lively hour.

Those of you living in Arizona, I’ll be looking forward to meeting you on Saturday, January 14th, from 1-3 at Bookman’s in Mesa.  The address is 1056 S. Country Rd.  C’mon down!

Until next week,

Keep living your life!

This is what early stage CKD looks like

Other Medical Issues When You Have CKD

It occurs to me that I’ve never included a sketch of the kidneys’ location.  This one is courtesy of  National Institute of Diabetes and  Digestive and Kidney Diseases, National Institutes of Health.  This institute is wonderful in allowing others to use their images and information as long as they are accredited.

Your kidneys, located in your body where the sketch demonstrates, are compromised.  That has a bearing on every infection, cold, surgery, disorder or anything else medical that may happen during your life. You need to be careful about any prescription drugs you may take. You need to read the accompanying literature very carefully to look for interactions. You have to read this material every time you obtain a refill since there may be new information about the drug since the last time you filled a script.

The idea is to be vigilant about prescribed drugs that may create some kind of side effect which may further damage your kidneys.  It’s a good idea to make certain your pharmacist knows you have CKD.  Naturally, you need to inform your nephrologist of any medications you intend to start or stop taking.

A case in point is erythropoietin [EPO]. This may be prescribed for anemia. The kidneys produce this protein which promotes the creation of red blood cells. A low red blood cell count may indicate anemia. Your liver also produces a small amount of EPO. All right, let’s say you’re not producing enough EPO and develop anemia.  Your nephrologist prescribes EPO injections.

However, 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. Incidentally, low blood pressure is less serious than high blood pressure, but it still must be treated.

I’ll use my own situation as an example of how carefully CKD patients need to monitor their own health. I had a bladder infection, but didn’t know it.  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 week 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.

I have had non-nephrology doctors tell me ridiculous things such as there’s nothing wrong with an Advil here or there or that I needed more then five ounces of protein a day.  I used to argue with them until I realized that I am the one responsible for slowing down the deterioration of my kidneys.  I have the help of my nephrologist and nutritionist, but it is ultimately up to me not to blindly listen to a doctor’s orders.  I need it explained, I need to understand if this is safe for me, and most importantly, I need to speak up if I feel it is not.  You, too, need to be your own advocate.  Take a friend with you to your appointments if you need moral support, but do not let anyone – doctor or not – dictate to you.

Of course, you already know about not taking non-steroidal anti-inflammatory drugs [NSAIDS] like Advil, Aleve and Ibuprofen, much less aspirin which can have an effect on your blood’s clotting ability possibly causing bleeding and harming the kidneys.  But did you know that certain other over the counter remedies can also be harmful to your health as a CKD patient?

They may contain elements you should not be taking if you have CKD.  For example, Alka Seltzer or baking soda is high sodium, and you are already trying to control your sodium intake.  Then there are antacids which may contain milk of magnesia, which can build up in your body and cause neurological difficulties.   Food supplements or vitamins may contain potassium or magnesium. Even diuretics can damage your kidneys by causing excess sodium excretion.  Read the labels and, if you’re not sure, ask your nephrologist. As I discovered, it’s better to be a pain in that doctor’s neck than risk taking a perfectly ordinary substance that had become a threat to you since your kidneys are not working as they should.  It’s a good idea to avoid enemas and laxatives since they may dramatically and quickly change your electrolyte balance.

I’ll continue with this topic on Tuesday, but right now I’d like to wish those who celebrate Christmas, a very merry one tomorrow.  For those, like me, who celebrate Hannukah or those who celebrate Kwaanza, I hope it was a good holiday for you.  On a personal note, since everyone else in my family celebrates Christmas and I’m the matriarch, I get to fill stockings for them all, cook a ham for my son-in-law, rib roast for my sweetheart and turkey for me.  I hear one of the kids is bringing home made egg nog (can I have that?  I’ll look it up right away!) and another is making Grandma’s recipe cheesecake.  Oh yes, there will be some fruits and veggies, too.  So, it’s true, some holiday celebrations do revolve around food!

Until Tuesday, keep loving your life.