For the Younger Women

You’d think that leaves me out, but you’d be wrong. I’m writing for pre-menopausal women…and for anyone who wants to know what menstrual cycles have to do with Chronic Kidney Disease. I’m one of those who wants to know.

I was already in my sixties when I was diagnosed with CKD, but I have many woman readers who have not yet reached that rite of passage known as menopause. Does their menses have any effect on their CKD, I wondered? Or, conversely, does their CKD have any effect on their menses?

Back to the beginning for those who have just plain forgotten what the menses is and why women experience it. Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/menses for starting us off today. Menses is:

“the periodic discharge from the vagina of blood and tissues from a non-pregnant uterus; the culmination of the menstrual cycle. Menstruation occurs every 28 days or so between puberty and menopause, except during pregnancy, and the flow lasts about 5 days, the times varying from woman to woman.”

I clearly remember the days of anxiously awaiting my period only to find I had miscalculated its start. Commence the washing-out-the-underwear-nightly-during-my-period era which lasted decades. It was messy, but apparently menstruation was necessary. Why? you ask.

Back to Wikipedia. By the way, when I was teaching research writing in college, I always found this a good source to start researching from despite the fact that anyone can edit it. This is the explanation I was looking for. I found it at https://en.wikipedia.org/wiki/Menstrual_cycle.

“The menstrual cycle is the regular natural change that occurs in the female reproductive system (specifically the uterus and ovaries) that makes pregnancy possible. The cycle is required for the production of oocytes [Me here: this means an immature egg] and for the preparation of the uterus for pregnancy….”

As someone who had always planned to be a mother, you can see why I felt this was a necessary – albeit messy – function of my body. I have a biological grandchild and another being planned. Thank you, menstruation.

But what if I had developed CKD when I was premenopausal? Would things have been different for me? DaVita at https://www.davita.com/education/kidney-disease/risk-factors/womens-health-risks-and-chronic-kidney-disease-ckd explains some of what I might have had to deal with.

“When a woman has chronic kidney disease her periods tend to be irregular. Once she begins dialysis her periods may even stop altogether. As kidney function drops below 20 percent of normal, a woman is less likely to conceive because dialysis doesn’t perform all of the tasks of the kidneys. The body retains a higher level of waste products than it would with a normal kidney, which can prevent egg production and affect menstruation.

Erythropoietin treatments will cause about 50 percent of woman on dialysis to get their periods again. This is attributed to the improved hormone levels and the treatment of anemia. Therefore, erythropoietin treatments can increase a woman’s fertility, so birth control should be used if a woman is sexually active and does not want to become pregnant.”

Okay, but I’m not on dialysis and my GFR hovers in the 50-55% range. I see from the quote above that my periods might have become irregular. I also noted that a ‘higher level of waste products is being retained.” (Why does that give me the creeps?)

Let’s go back to those waste products. Remember what they are? Shodor, a site for undergraduate students, at https://www.shodor.org/master/biomed/physio/dialysis/kidney.htm was helpful here:

“The kidneys are the filtering devices of blood. The kidneys remove waste products from metabolism such as urea, uric acid, and creatinine by producing and secreting urine. Urine may also contain sulfate and phenol waste and excess sodium, potassium, and chloride ions. The kidneys help maintain homeostasis by regulating the concentration and volume of body fluids. For example, the amount of H+ and HCO3  secreted by the kidneys controls the body’s pH.”

Whoa! I wouldn’t want even more of these substances in my body. Not only would they make the CKD worse, but also its effects on my body. According to Medical News Today at https://www.medicalnewstoday.com/articles/172179.php, these effects include:

  • anemia
  • blood in urine
  • dark urine
  • decreased mental alertness
  • decreased urine output
  • edema – swollen feet, hands, and ankles (face if edema is severe)
  • fatigue (tiredness)
  • hypertension (high blood pressure)
  • insomnia
  • itchy skin, can become persistent
  • loss of appetite
  • male inability to get or maintain an erection (erectile dysfunction)
  • more frequent urination, especially at night
  • muscle cramps
  • muscle twitches
  • nausea
  • pain on the side or mid to lower back
  • panting (shortness of breath)
  • protein in urine
  • sudden change in bodyweight
  • unexplained headaches

Is there anything else I should know?

The Huffington Post at https://www.huffingtonpost.com/leslie-spry-md-facp/women-with-chronic-kidney_b_10163148.html let Dr. Leslie Spry, Spokesman for the National Kidney Foundation, answer this one and I will, too.

“Women with CKD have been shown to commonly experience menstrual irregularities. This can include excessive bleeding, missed periods, and early onset of menopause. In studies of patients with CKD, women enter menopause from 3 to 5 years earlier than patients without CKD. Treatment can be very challenging. Studies of estrogen replacement therapy have shown an increased risk of heart disease and blood clotting disorders. Kidney transplantation will usually correct these abnormalities.”

Now I wonder if I’d had CKD even earlier than when I’d caught it on a lab report a decade ago. Excessive bleeding? Check. Early menopause? Check. Hmmm.

But wait. There’s some good news in here, too.

“’Thus, recurring changes of sex hormone levels, as brought about by the natural menstrual cycle, might be involved in periodic tissue remodeling not only in reproductive organs, but to a certain extent in the kidneys as well,’ she added.

Lechner [Me here: She’s the study author – Dr. Judith Lechner, of the Medical University of Innsbruck in Austria] hypothesizes that estrogen might help to replace damaged cells. During cycle phases of high estrogen exposure, kidney cells might be induced to grow, she explained, ‘while at time points of decreasing estrogen levels damaged or simply older cells might be discarded into the urine.’”

You can read more about this small study published in the Journal of the American Society of Nephrology in Medical Daily at https://www.medicaldaily.com/sex-differences-menstrual-cycle-kidney-failure-384251.

Now I know… and so do you. Younger women, your CKD menstrual future may not be as dismal as you’d thought.

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!

Just a Little Bit Pregnant

We are in Dayton, Ohio, right now and have attended the surprise baby shower for one of my daughters. Wow, just wow! Every other phrase from the guests’ lips was baby this or baby that… and rightly so. It was a baby shower, for goodness’ sake. I loved the oohing and aahing, the happy tears, the stories about when the mom and dad to be were babies themselves. I loved seeing how excited the parents to be were and how thrilled we all were for them.

Yep, I got to thinking. Is it the same for those pregnant moms with CKD? When I first started writing about Chronic Kidney Disease back in 2010, this was included in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Pregnancy is risky for women with CKD. The risks for both the mother and fetus are high as is the risk of complications.  You’ll need to carefully discuss this with your nephrologist and your gynecologist should you absolutely, positively want to bear a child rather than adopt.”

How dismal. And how outdated. Eight years can make one heck of a lot of difference in the medical field.

The National Kidney Foundation at https://www.kidney.org/atoz/content/pregnancy has information which is far more recent so I’m going to turn this week’s blog over to them for a while:

“A new baby is a joy for any family. But pregnancy can put a lot of stress on your body. If you have kidney disease or kidney failure, it can put you and the health of your unborn child at risk.

Are you thinking about pregnancy? If so, you should discuss it beforehand with your doctor or other healthcare provider. They know you, and they can help you make a decision that is based on your own personal health. There are many things to consider. You and your doctor should discuss them all very carefully. Some things that can affect a healthy pregnancy include:

  • Your stage of kidney disease
  • Your general health
  • Your age
  • Having high blood pressure, diabetes, or heart disease
  • Having other serious health conditions
  • Protein in your urine

Here are a few brief answers to some common questions about kidney disease and pregnancy.

Can a woman with “mild” kidney disease have a baby?

That depends. There is good evidence to suggest that women with very mild kidney disease (stages 1-2), normal blood pressure, and little or no protein in the urine (called “proteinuria”) can have a healthy pregnancy. What is proteinuria? It’s a sign of kidney damage. Your body needs protein. But it should be in your blood, not your urine. Having protein in your urine usually means that your kidneys cannot filter your blood well and the protein is leaking out.

In women with moderate to severe kidney disease (stages 3-5), the risk of complications is much greater. For some women, the risk to mother and child is high enough that they should consider avoiding pregnancy.

If you are thinking of becoming pregnant, ask your doctor or other healthcare provider about your stage of kidney disease, your risk for complications, your degree of proteinuria, and any other health conditions you may have.

Can a woman who is on dialysis have a baby?

Some changes in your body make it hard to become pregnant. For example, most women on dialysis have anemia (a low red blood cell count) and hormone changes. This may keep them from having regular menstrual periods.

Women with kidney failure are usually advised against becoming pregnant. The rate of complications is very high. Risks to both the mother and developing baby are high. If you are thinking of becoming pregnant, talk to your healthcare provider. If you become pregnant, you will need close medical supervision, changes in medicine, and more dialysis to have a healthy baby.

Can a woman who has a kidney transplant have a baby?

Yes. If you have a kidney transplant, you are likely to have regular menstrual periods and good general health. Therefore, getting pregnant and having a child is possible. But you should not become pregnant for at least one year after your transplant, even with stable kidney function. Some medicines that you take after a kidney transplant can cause problems to a developing baby. In some cases, pregnancy may not be recommended because there is a high risk to you or the baby. Another reason is if there is a risk of losing the transplant.

Talk with your healthcare provider if you have a transplant and are thinking about getting pregnant. Your healthcare provider may need to change your medications so that it is safe for you to become pregnant. It is very important to use birth control until you and your healthcare provider have agreed that it is safe for you to become pregnant.”

There is even more information at the URL for this article. What I found encouraging is that for each stage of kidney disease – chronic, dialysis, transplant – there is hope. I see the cautions, I know it means extra care and extra work, but it is possible. Nowhere did I read that pregnancy is not for those with CKD.

By the way, I didn’t develop CKD until my youngest was in her twenties and my doctor still had to take my general health, age, and if I had high blood pressure, diabetes, heart disease, or other serious health conditions into account.

The baby whose shower we attended is our first grandchild. When I was diagnosed with CKD a decade ago, I doubted I would live to see this day… and that had nothing to do with the fact that I had just met the man who was to be my husband and hadn’t yet met his daughter who will be this baby’s mother.

My point here is that I’ve learned so much about keeping my CKD under control and it’s pretty much been through asking questions and working with my nephrologist, as well as researching. And now I’m urging you to learn as much as you can if you’d like to have a baby. Well, in general too, but today’s blog is about pregnancy.

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!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”glomerulus

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

“Nephrons: The part of the kidney that actually purifies and filters the blood.”

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist {kidney specialist}. You’ll need a renal {kidney} dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis {artificial cleansing of your blood}. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

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!