Sex?

I know, I know. When you see that question on an application, you want to answer ‘yes,’ but you’re only given the choice of male or female. Well, at least that’s my experience. Okay, got that out of the way.

Way back in 2011, the following was included in my first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This was way before the website, Facebook page, the blog, the Instagram, Pinterest, Twitter, and LinkedIn accounts. Way before the articles, radio shows, and interviews, book signings, and talks about CKD. Come to think of it, this was way before SlowItDownCKD was born.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate. Usually, these problems start with an inability to keep an erection as long as usual. The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body. Or maybe it’s leaky blood vessels. Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones….

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety. But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes….

Women with CKD may also suffer from sexual problems, but the causes can be complicated. As with men, renal disease, diabetes and hypertension may contribute to the problem. But so can poor body image, low self-esteem, depression, stress and sexual abuse. Any chronic disease can make a man or a woman feel less sexual….

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed….

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too. And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful….

Well, what’s changed since I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? in 2010?

The National Kidney Foundation at https://www.kidney.org/atoz/content/sexuality now includes the following on their website:

It’s important to remember that people with kidney failure can have healthy marriages and meaningful relationships. They can fall in love, care for families, and be sexual. Staying intimate with those you love is important. It’s something everyone needs.

Many people think that sexuality refers only to sexual intercourse. But sexuality includes many things, like touching, hugging, or kissing. It includes how you feel about yourself, how well you communicate, and how willing you are to be close to someone else.

There are many things that can affect your sexuality if you have kidney disease or kidney failure — hormones, nerves, energy levels, even medicine. But there are also things you and your healthcare team can do to deal with these changes. Don’t be afraid to ask questions or get help from a healthcare professional.

DaVita at https://www.davita.com/kidney-disease/overview/living-with-ckd/sexuality-and-chronic-kidney-disease/e/4895 also offers advice:

Once again, it’s important to remember, you are not alone.

There are no limits with regard to sexual activities you may engage in as a patient with renal disease, as long as activity does not place pressure or tension on the access site, causing damage. (Me: This is for advanced CKD.)

If you are sexually active, practicing safe sex and/or using birth control are needed, even if you think you may be physically unable to have children.

Activities such as touching, hugging and kissing provide feelings of warmth and closeness even if intercourse is not involved. Professional sex therapists can recommend alternative methods as well.

Keeping an open mind and having a positive attitude about yourself and your sexuality may lower the chances of having sexual problems.

There are both medical and emotional causes for sexual dysfunction. The reason for your dysfunction can be determined through a thorough physical exam in addition to an assessment of your emotional welfare and coping skills.

Relaxation techniques, physical exercise, writing in a journal and talking to your social worker or a therapist can help you to feel better about your body image and/or sexual dysfunction.

Resuming previous activities, such as dining out or traveling, as a couple or single adult, can be helpful.

Provide tokens of affection or simple acts of kindness to show you care.

Communicate with your partner or others about how you feel.

According to the Kidney Foundation of Canada at file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Sexuality%20and%20CKD.pdf, these may be the causes of sexual problems in CKD.

Fatigue is a major factor. Any chronic illness is tiring, and chronic kidney disease, which is often accompanied by anemia and a demanding treatment, practically guarantees fatigue.

Depression is another common issue. Almost everyone experiences periods of depression, and one of the symptoms of depression is loss of interest in sexual intimacy.

Medications can also affect one’s ability or desire to have intercourse. Since there may be other medications which are just as effective without the side effect of loss of sexual function or desire, talk to your doctor about your pills.

Feelings about body image Having a peritoneal catheter, or a fistula or graft, may cause some people to avoid physical contact for fear of feeling less attractive or worrying about what people think when they look at them. (Me: Again, this is for late stage CKD.)

Some diseases, such as vascular disease and diabetes, can lead to decreased blood flow in the genital area, decreased sexual desire, vaginal dryness and impotence.

It looks like the information about CKD and sexuality hasn’t changed that much, but it does seem to be more available these days.

Until next week,
Keep living your life!

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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!

I’ll Sleep When I’m Dead

How many times have you said this (before your diagnose) to those who told you to slow down, take it easier, don’t rush so, take some time for yourself, etc.? As a younger person, I was a high school teacher, an actor, a writer, and – most importantly – a mother, actually a single mother once my daughters were double digit aged.

Guess what. You may sleep when you’re dead, but you need to sleep now before you hasten the time to your death. What’s that? You get enough sleep? I thought I did, too, but I wasn’t getting the kind of sleep I needed.

Why do we need sleep anyway? I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for some answers. The first reason I stumbled across was in an article from The Journal of The American Society of Nephrologists:

“Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.”

Ramon C. Hermida, PhD is the director of the bioengineering and chronobiology labs at the University of Vigo in Spain.

Hmmm, I take medication for hypertension… and I take it at night. I see that I need to sleep for it to work most effectively. I’ve known this for years and written about it. The point is you may need to know about it.

Then I started wondering if I were correct in the amount of sleep I thought I needed. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 was helpful here:

“How much sleep is enough sleep anyway? According to Dr. Timothy Morgenthaler of The Mayo Clinic site, seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

• Pregnancy. Changes in a woman’s body during early pregnancy can increase the need for sleep.
• Aging. Older adults need about the same amount of sleep as younger adults. As you get older, however, your sleeping patterns might change. Older adults tend to sleep more lightly and for shorter time spans than do younger adults. This might create a need for spending more time in bed to get enough sleep, or a tendency toward daytime napping.
• Previous sleep deprivation. If you’re sleep deprived, the amount of sleep you need increases.
• Sleep quality. If your sleep is frequently interrupted or cut short, you’re not getting quality sleep. The quality of your sleep is just as important as the quantity.”

While I’m not pregnant (and will become a medical miracle if I become pregnant), all the other circumstances do apply to me. During Shiva after my brother’s death, there was very, very little sleeping going on. Hence, sleep deprivation. I’m aging and my sleep quality is not great right now. Those are my circumstances, but they could be yours. Are you getting enough sleep?

Sometimes, simply having Chronic Kidney Disease can be the source of sleep problems. This is something I’ve written about several times. Here’s an excerpt from SlowItDownCKD 2015 about just that:

“We’ve known for a long time that sleep disorders are more common in kidney disease patients than in the general population,” Charles Atwood, MD, associate director of the University of Pittsburgh Medical Center’s Sleep Medicine Center in Pennsylvania, who wasn’t involved in the study, told Medscape Medical News. “A lot of studies in the past focused on the dialysis population. It seems like this group focused on people with milder degrees of kidney disease and basically found that they also have sleep disorders and I’m not surprised by that,” he added.

You can read the entire article at http://www.medscape.com/viewarticle/805342, although you will have to register for a free account.

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep. I took a comment from one study, a sentence from another, and unilaterally decided this was the reason. I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion….”

Oh, right: you need a definition of segmented sleep. Wikipedia provides one:

“Segmented sleep, also known as divided sleep, bimodal sleep pattern, bifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.”

The National Institutes of Health at https://www.nhlbi.nih.gov/health/health-topics/topics/sdd/why sums up our need for sleep beautifully:

“Sleep plays an important role in your physical health. For example, sleep is involved in healing and repair of your heart and blood vessels. Ongoing sleep deficiency is linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke.

Sleep deficiency also increases the risk of obesity. For example, one study of teenagers showed that with each hour of sleep lost, the odds of becoming obese went up. Sleep deficiency increases the risk of obesity in other age groups as well.

Sleep helps maintain a healthy balance of the hormones that make you feel hungry (ghrelin) or full (leptin). When you don’t get enough sleep, your level of ghrelin goes up and your level of leptin goes down. This makes you feel hungrier than when you’re well-rested.

Sleep also affects how your body reacts to insulin, the hormone that controls your blood glucose (sugar) level. Sleep deficiency results in a higher than normal blood sugar level, which may increase your risk for diabetes.

Sleep also supports healthy growth and development. Deep sleep triggers the body to release the hormone that promotes normal growth in children and teens. This hormone also boosts muscle mass and helps repair cells and tissues in children, teens, and adults. Sleep also plays a role in puberty and fertility.

Your immune system relies on sleep to stay healthy. This system defends your body against foreign or harmful substances. Ongoing sleep deficiency can change the way in which your immune system responds. For example, if you’re sleep deficient, you may have trouble fighting common infections.”

I think I need to go to sleep now.

Until next week,
Keep living your life!

Good Grief!

No, Charlie Brown, grief is not good. Grief is not good at all. My big brother, Alan Peckolick, died 10 days ago. You can read about him in lots of publications and I’ll even provide the links.* But you can’t read about him as my big brother in any of these.

Nowhere do they mention how Alan used our brother Paul’s accordion for sound effects as he told us scary stories when forced to babysit. Nowhere do they mention how this non- violent boy promptly tackled his friend to wash his face in snow after he caught the friend throwing a snowball at me, his little sister. Nowhere do they mention his being told to take Paul and me to his scout meeting and his doing it, inappropriate or not.

Six and a half years is a big age difference when you’re growing up. You sort of catch up as adults. We never did. We lived in different worlds. He was a giant in the art world. I was happy raising my little girls, acting, teaching, and writing on a less than giant scale. Nevertheless, he was my brother and I made sure we kept in touch.

As Jews, we sat shiva. That is the week long period of mourning for the first degree relatives of the deceased. At their loft in Manhattan where shiva was being observed, I met many members of his social circle who were surprised Alan had a brother and sister and who asked me to tell them anecdotes about growing up with him. They praised his art world, and rightly so. I praised the big brother as a child… and then a teenager. They were charmed by the Alan that was this age; I was charmed by the Alan they knew as an adult.

But I found myself grieving. It was not unexpected. I hurt all over, nothing specific, just a general aching… or was it my heart I felt aching? Wait a minute, what was happening to my kidneys throughout this process of grief?

The day he was taken off life support, I was at my lab having the usual quarterly blood draw. Alan and Jessica Weber, his wife, were in Connecticut where they have a country house and where the catastrophic fall that landed him on life support occurred; I was in Arizona. There was nothing I could do from afar and I knew I could trust Jessica to keep me informed. I thought keeping myself to my usual schedule would help me cope.

Except for the values in the next sentence, all my tests came back as low as they could while still being in the normal range. That had never happened before. While my GFR stayed stable, my BUN was at 30 (‘normal’ range is 8-25), Bun/Creatinine Ratio 29.1 (‘normal’ range is 10-28) and my glucose was 113 (‘normal’ range is 65-99). I was underwhelmed. I figured it was my brother’s situation making my body goes haywire. I still am.

PyschCentral at https://psychcentral.com/lib/your-health-and-grief/ offers the following explanation of how grief affects our bodies:
“…. At the death the brain ‘translates’ the stress of grief into a chemical reaction in the body. The pituitary gland located at the base of the brain is stimulated to produce a hormone called adrenocorticotrophin hormone (ACTH). This reaction is a “protective” one and in essence makes the body ready to do battle. The ACTH (from the pituitary gland) then travels to the adrenal gland, a gland at the top of the kidneys, which causes a chemical reaction which ultimately produces cortisone. As the cortisone level increases it causes the production of ACTH to level off.

What happens in the case of grief where the stress continues for many months? The cycle does not operate as it should. Because the stress is continuing, the production of ACTH is continuing thus causing the adrenal gland to produce more and more cortisone. The result is an abnormally high level of cortisone circulating in the blood sometimes exceeding ten to twenty times the normal levels.

A high level of cortisone is one of the things that causes our immune system (the system that normally fights off disease carrying bacteria fungi and viruses) to falter. The high level of cortisone affects yet another gland the thalamus which manufactures the white cells of our blood. With the thalamus not functioning properly, it cannot produce white cells that are effective. Those white cells normally locate and phagocytize (eat up) the invading germs, viral particles or even pre-cancerous cells. Thus with the white cells unable to function properly the individual is 100% more susceptible to the most common germs.”

Well, what is cortisol? As I mentioned in SlowItDownCKD 2016,
“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body.”

So our already compromised immune system is compromised even more compromised. Are we now at the mercy of our grief? Nothing that dramatic, folks.

 

We can up our vitamin D – with our nephrologist’s approval first, of course. As mentioned in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,
“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

We can up our NREM (non-rapid eye movement) sleep. I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for this information:
“WebMD tells us
During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds bone and muscle, and appears to strengthen the immune system.”

My favorite deterrent to a further compromised immune system? Hugs. MedicalNewsToday at http://www.medicalnewstoday.com/articles/275795.phpat explains:
“Oxytocin has an anti-anxiety (anxiolytic) effect ….”

Less anxiety, less stress. That’s something that could be useful during times of grief. I didn’t have to clear this with my nephrologist, hugging is a way of life with my family and friends, and it somehow, magically, lessens the pain for a little while.

Until next week,

Keep living your life!

*The links to Alan’s obituaries:

http://www.huffingtonpost.com/entry/alan-peckolick-dead_us_5988ae58e4b0d7937388f5be
https://www.washingtonpost.com/local/obituaries/alan-peckolick-influential-designer-from-madison-avenue-to-hollywood-dies-at-76/2017/08/10/ea33134a-7dd7-11e7-9d08-b79f191668ed_story.html?utm_term=.d2b395bfa3c6

Yet Another Possibility

Today we have yet another fitness plan? Weight loss plan? Health plan? Beauty plan? I don’t know what to call it since they offer so many different types of products. What’s that, you ask. It’s called Wakaya Perfection. It seems a great number of my friends and acquaintances have been involved in their health in this way recently. They, however, do not have Chronic Kidney Disease.

Let’s get this part out of the way: I want to go there. Yes, there. Wakaya is not only a company, but an island in the South Pacific and it.is.beautiful. Take a look at their website (wakayaperfection.com) so you can see for yourself… but, of course, that’s not what this blog is about.

The company has several different lines, so I decided to look at one product from each to evaluate them for CKD patients. Remember, should they not be viable options for CKD patients does not mean they’re not viable for those without CKD.

Let’s start with the weight loss products since that’s what’s on my mind lately. That would be the Bula SlimCap. This is what their website has to say about these caps:

“At Wakaya Perfection, when we say all natural, that is exactly what we mean. Our tropical flavors are:

  • Sugar Free
  • Fat Free
  • Gluten Free

And Contain:

  • NO Artificial Flavors, Ingredients or Colors
  • NO Monosodium Glutamate (MSG)
  • NO Insect or Animal Matter
  • NO Growth Hormones
  • NO Antibiotics
  • NO Herbicides or Pesticide

That sounds great and appeals to me. Wait a minute, natural is good, but what is it that’s natural? I couldn’t find an ingredient list other than this:

  • All Natural Flavors
  • Active Ingredients
  • Pink Fijian Ginger
  • Stevia Reb-A 98%
  • Quick Dissolve Blend

What makes it a quick dissolve blend? What are the all natural flavors? What are the active ingredients? Ginger is permissible for CKD patients, but how much ginger is in each cap? And as for Stevia Reb-A 98%, this is a warning I found on New Health Guide at http://www.newhealthguide.org/Stevia-Side-Effects.html: “The FDA has noted that stevia may have a negative impact on the kidneys, reproductive, cardiovascular systems or blood sugar control.” Uh-oh, they mentioned our kidneys.

Oh well, that’s only one product and maybe there’s some other source of ingredients somewhere. Hmmm, I’d want to know what’s in a product and how much of each ingredient is in it before I took it, especially with CKD on my plate.

Let’s switch to a fitness product. I stayed away from the protein shake meal replacements for the reasons I explained about such products in SlowItDownCKD 2016. This is the poignant part of that blog:

“Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? Here’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

‘So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.’”

Why don’t we take a look at the BulaFit Burn Capsules? Wakaya Perfection describes them as,

“A potent combination of herbs and extracts that help you manage appetite/cravings while providing sustained energy and heightened focus throughout your day. BulaFIT BURN™ is designed to help boost fat burning and provide a sense of wellbeing that reduces cravings for food and snacking.

When combined with a healthy diet and exercise, BURN capsules promote a sense of well being and energy that reduces cravings for food and snacking. BURN can also play an important role in increasing the results of ketosis and even avoiding the ‘keto flu’ that some people may experience with other ketogenic programs.”

Huh? What’s keto flu? I figured a site with the name Keto Size Me (http://ketosizeme.com/keto-flu-101-everything-need-know/) could help us out here… and they did. “The ‘keto flu’ is what we commonly call carbohydrate withdrawal symptoms. These symptoms usually occur in people who start a low carb diet that alters their hormones and causes and electrolyte imbalances.”

Wait! Electrolyte imbalances? But we work so hard with the renal diet trying to keep these within the proper range for CKD. I went back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a little reminder about electrolytes.

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride, and bicarbonate. They maintain balance in your body….Too much or too little of a certain electrolyte presents different problems.”

Nope, not me. I’m keeping my electrolytes right where they belong. This is not looking good for the Chronic Kidney Disease patient. I vote no; you, of course, have to make up your own mind.

News of a local opportunity: This year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.

Until next week,

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

5/29/15 9/4/15
Microalbumin, Urine

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

How’s that for proof positive of what stress can do to you?  Other values also shot up, some past the normal range. While .57 to 1.00 mg/dL is within range for creatinine, I knew mine was a bit beyond this range. Now it’s shot up from 1.02 to 1.12.

My glucose – which I’ve spent over a year getting and keeping in range – went up from 94 to 117 mg/dL. The normal range is 65-99.

And my GFR? Oh no, down to 51 from 56.  So now I’m a stressed, sicker person.

Mind you, this was unavoidable stress. There was a medical emergency in the family (No, it’s not me.) and, by default, I was the one handling it. There simply wasn’t anyone else to do it at the time and it had to be dealt with immediately.  It was that kind of emergency.

There went the carefully orchestrated seven hours of sleep a night.  A 36 hour round trip to New Jersey with snatches of sleep here and there killed that.

There went the carefully orchestrated daily exercise. I couldn’t leave the patient alone long enough to even walk the airports… and the patient was incapable of doing it, anyway.

There went the carefully orchestrated ingestion of 64 fluid oz. It was catch as catch can since you can’t bring water into the gate area and they only had flavored or mineral infused water for sale once you passed the entry area.

There went the carefully orchestrated renal diet.  No, wait, that one I was very, very careful about.  I just drove the restaurant servers nuts with all my modifications. I figured if I could hold on to that, maybe I wouldn’t do as much damage to my kidneys and sugar levels as I feared I might.

Now that I’ve started in medias res (Latin for in the midst of things. Something I remember from long, long ago at Hunter College…even in an emergency.), let’s backtrack a little.  The obvious mystery is mg/dL. I have responded ‘huh?’ to this before. It means milligrams per deciliter.

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

(Courtesy of http://www.csgnetwork.com/directvolcvtdl2fo.html)

You’re probably familiar with mg. if you take any prescription medication.  As for deciliter? (I love that I remember so much from college almost 45 years ago.) That means 1/10 of a liter or 3.8 ounces. For the sake of full disclosure, I did have to look up the equivalent in ounces. So you see, there wasn’t that much change in my values, but enough for me – and my PCP – to notice.

Book CoverTo be perfectly honest, I had to use What Is It and How Did I Get It? Early Stage Chronic Kidney Disease as my bible to even understand these results.  Odd how you forget what you spent so much time learning… especially during an emergency.

TSH means Thyroid Stimulating Hormone. This is what I wrote about it.

“Part of the CBC [comprehensive blood test] which measures your triiodothyronine, which is a thyroid hormone that plays an important role in controlling your metabolism.  If the T3 reading is abnormal, then the T4 test is ordered to find out what the problem might be.

So it’s really a test to see if you need another test to check your thyroid function.  Notice how much closer I came to needing that secondary test while I was under stress. Although I was still within normal range, that was a significant jump.  No wonder my metabolism is screwed up. That is governed by your thyroid.

As for the Microalbumin, Urine, I was out of bounds there and, frankly, that worries me. This

“tests for micro, or very small amounts, of albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Well, I know I have Chronic Kidney Disease and I don’t like this indication that stress is making it worse. I’ve worked too hard for the last eight years to let this happen.

I’m hoping the renal dietician can help me get back on track when I see her later today. I follow the renal diet that was designed for me, but now I believe it needs some tweaking.food label

I’ve also been declared pre-diabetic since the last time I saw her.  Although I’ve been to see a diabetes counselor for several months, I’m wondering if today’s appointment with the renal nutritionist will give me ideas about how to include the pre-diabetes diet in the kidney disease diet.

I was down at my Primary Care Doctor’s appointment this past week; I won’t deny it. Add these test results to the family medical emergency plus 9/11 (I watched the buildings from my classroom window and went to more memorials that week than any 10 people should have to go to in a year.) and  unexpected death of a neighbor and I really wasn’t myself.  I finally asked her, “What’s the point of all my hard work if I end up with these results?”

Being the kind of person she is and the kind of doctor she is, she reminded me it was my hard work that kept my rising values from rising even more. Funny, but that got me right back on track.  Thank you to my PCP and other concerned doctors like her.

Talking about testing, here’s something locals should know about and it’s this Saturday, folks.

11990439_10204944411870363_4775265224050810062_n

Call me crazy, but I’m having quite a bit of fun indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. It seems to me that I’d rather be doing that or researching than working on my fiction.  Hmmmm, what am I telling myself?

IMG_1398

 

Until next week,

Keep living your life!

Not Exactly

Before we start, I want to tell you I’ll be the guest on Online with Andrea tonight at http://www.blogtalkradio.com/onlinewith andrea/2015/03/23/chronic-kidney-disease in honor of National Kidney Month 7:30 EST.  This is a good opportunity to share aNational Kidney Monthwareness of our disease.

Kidney Book CoverYou may have friends, family, co-workers who are still not really sure what CKD is or why it’s important to be tested.  Here’s your chance to have someone else explain it for a change. I haven’t done a radio show in quite a while, but the timing was just too good to pass up this time around.

Now, what’s not exactly?  I’ve been thinking that knowing the definition of something is not the same as knowing whatever it is. {My English teacher senses are tingling right now.}  Specifically, I was thinking about pre-diabetes. We know that ‘pre’ is a prefix – talk about using a word, or in this case a part of a word, to define itself –a group of letters added before a word that changes its meaning. To further complicate this simple explanation, the prefix ‘pre’ means before. So pre-diabetes means before diabetes.

Wait a minute.  Aren’t we all pre-diabetes, or any other condition for that matter, before we actually develop it?  Well, yes.  Something is off here.  Ah, a synonym {The English teachers arises!  That’s a word that means the same as the word you can’t think of.  No, that’s a writer’s definition.  An English teacher will tell you they are words with the same meaning but different spellings and pronunciations.)

The synonym for pre-diabetes is borderline diabetes. That makes sense.  You’re just about there, but not quite.  That’s what my A1C results have blood glucosebeen saying for years.  Reminder: the A1C is the blood test that measures how well your body has been using your blood glucose for the past several months before you take the test.  Mine wasn’t doing so well.

We are CKD patients.  We know what diabetes can do to your kidneys and that diabetes is the number one cause of CKD. In case you’ve forgotten, this is from The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

With diabetes, the small blood vessels in the body are injured. When the blood vessels in the kidneys are injured, your kidneys cannot clean your blood properly. Your body will retain more water and salt than it should, which can result in weight gain and ankle swelling. You may have protein in your urine. Also, waste materials will build up in your blood.

bladderDiabetes also may cause damage to nerves in your body. This can cause difficulty in emptying your bladder. The pressure resulting from your full bladder can back up and injure the kidneys. Also, if urine remains in your bladder for a long time, you can develop an infection from the rapid growth of bacteria in urine that has a high sugar level.

I’ve repeated this from last week’s blog because you need to understand diabetes so you can understand the importance of not letting your body develop it.

Now borderline diabetes. While WebMD calls that the former name for pre-diabetes, it also talks about insulin resistance at http://www.webmd.com/diabetes/guide/insulin-resistance-syndromeinsulin resistance Insulin is a hormone that controls your blood sugar levels. If you have insulin resistance, your body doesn’t respond as well as it should to the insulin it makes. That leaves your blood sugar levels higher than they should be. As a result, your pancreas has to make more insulin to manage your blood sugar.

What I’ve discovered is that sometimes even that extra insulin produced by the pancreas isn’t enough. The first line of treatment for borderline or pre-diabetes according to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 is

  • Eating healthy foods. Choose foods low in fat and calories and high in fiber. Focus on fruits, vegetables and whole grains. Strive for variety to help you achieve your goals without compromising taste or nutrition. This type of diet may be referred to as a Mediterranean-style diet.
  • Getting more physical activity. Aim for 30 to 60 minutes of moderate physical activity most days of the week. Try not to let more than two blues dancersdays go by without some exercise. Take a brisk daily walk. Ride your bike. Swim laps. If you can’t fit in a long workout, break it up into smaller sessions spread throughout the day. The American Diabetes Association also recommends resistance training, such as weightlifting, twice a week.
  • Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.

Book CoverPart 2

And then there are the folks like me. Despite a hard won nine pound weight loss, daily physical activity, and a renal healthy diet (Hey, I have Chronic Kidney Disease and have had it for the last seven years!), my body still is insulin resistant. That means medication.

I started out on 500 mg. Metformin daily.  This is controversial for kidney patients since there is a school of thought saying it can harm the kidneys.  That meant lots of discussion with my nephrologist, although my primary care doctor prescribed the drug.  The nephrologist felt that 500 mg. once a day would not harm the kidneys I’ve kept at stage 3 CKD since my diagnose.Metformin

What we hadn’t figured on was the stomach upset, nausea, and lightheadedness I’d feel.  I was at the point of immediately locating the waste paper baskets in any room I entered – just in case, you understand – when my PCP and I decided to halve the dose.  Things are still better as far as blood glucose and sort of getting there as far as the side effects.

This is all new to me.  As with anything else new, it’s foreign right now. But it’s important to me to protect that kidney function so I know I’ll figure out how to deal with the insulin resistance more effectively and soon.  Yet, I’m awfully thankful I also have nutritional counseling once a week for at least two months.

Until next week,Digital Cover Part 1

Keep living your life!

How I Connect Coyotes and CKD

Sunday evening is the Sustainable Blues dance lesson at the Blooze Bar.  When Abby teaches, I go and then I do some marketing on the way home.blues

When Bear was helping me unload the groceries from my car last night, he pointed out a coyote casually walking down the street.  We’re only a quarter of a mile from an arroyo and often see wild life there, but other than bunnies and Gambrel Quail, not in front of the house.

This means Bella needs to stay in the house from before dusk until after dawn since those are prime hunting times for the coyote.  Her dog door was closed last night.  While she is a medium sized dog, I wouldn’t be surprised if a pack of coyotes could devour her… and that’s why IMAG0269 (1)they’re on our block.

These creatures are hungry and they want red meat.  They’re adaptable and will eat anything when they’re hungry enough – even garbage – but 90% of their diet consists of red meat when they can find it.  Notice I’m not citing any websites here.  This is common knowledge when you live in the desert, something I’ve done for the last dozen years.

The coyote sighting got me to thinking.  They eat red meat.  Humans do, too.  Yet, as Chronic Kidney Disease patients we’re urged away from this practice.  I accept it, but I’ve forgotten why and thought you might have, too.coyote

As usual, let’s start at the beginning.  Precisely what is ‘red meat’? According to the Bing Dictionary, red meat is “meat that is red when raw: meat that is relatively dark red in color when raw, e.g. beef or lamb.”

I don’t eat lamb and never have due to some childhood questioning as to why a child should eat another child. (Okay, so I was a deep thinker even then.) Red meat was the staple of the family’s diet when I grew up and no meal was considered complete without it. That’s not the case now.

red meatWebMD has a truly illuminating three page article debating the merits and demerits of red meat at http://www.webmd.com/food-recipes/features/the-truth-about-red-meat. Most of it deals with the protein and fat content.  That is something that should concern us as CKD patients.    (It also explains why pork is considered a red meat rather than a white meat as a former colleague at Phoenix College tried to convince me.)

Okay, so fat – and hence, cholesterol – is something that could adversely affect your heart, not great for anyone including us.  But, as CKD sufferers, it’s more the protein content of red meat that concerns us right now.

In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, protein is defined as “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”  That’s on pages 134-5 for those of you with a print copy of the book.  Those of you with a digital copy, use the word search function.

That definition says a lot.  Let’s take it bit by bit.  Amino acids, simply put, are “any one of many acids that occur naturally in living things and that include some which form proteins.”  Thank you, Merriam Webster Dictionary.  Did you notice that they may form proteins?  Keep that in mind.Book Cover

So what are peptide bonds, then? This is a bit more complicated, so I went to Education Portal at http://education-portal.com/academy/lesson/peptide-bond-definition-formation-structure.html#lesson for the most easily understood definition: “Peptide bonds are the key linkages found in proteins. These bonds connect amino acids and provide one of the key foundations for protein structure.”  Again, proteins.  This is a bit circular, but the important point here is that both are involved in the production of protein.

The renal diet I follow restricts my daily protein intake to five ounces a day, but why? Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page77 this time:

So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.

Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries.  This is where the blood from the renal artery is filtered.  The glomerulus is connected to a

Glomerulus-Nephron 300 dpi jpgrenal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.

For those of you who may have forgotten, phosphorus isn’t troublesome in early or moderate stage CKD, but can be in Stages 4 and 5.  Phosphorus works in conjunction with calcium to keep our bones and teeth healthy, but it has other jobs, too.  Compromised kidneys cannot filter out enough of this, though.  That can lead to calcification in parts of the body.

Confession time: after six years of following the Northern Arizona Council of Renal Nutrition Diet, I am not attracted to red meat.  Bear’s family traditionally has standing rib roast for Christmas and ham for Easter.  I will gladly cook them for the family – or buy them already cooked – but I’m fine with the steamed vegetables and a taste, a little one at that, of each of the meats. We don’t buy red meat when we market (except when Bear has an urge) and rarely eat it in restaurants. It wasn’t that hard to get out of the habit of always having red meat.

Until next week,

Keep living your life!

To Stress Or Not To Stress

I woke up yesterday morning, threw open the windows, and just listened to the birds singing away while the sun shone right in. I was filled with joy that it was Sunday morning, Bear Bearandmewas right next to me, and I could do that.  Then I realized every morning is Sunday morning for me. I live in sunny Arizona and am retired.  The only stress I have is that which I impose upon myself.

I have heard my four grown daughters talk about the stress in their lives and what it seems to be doing to each of them in different ways.  We’re not talking about life or death stress, rather everyday should-I-or-shouldn’t-I stress.  Should I take the new job?  Should I go out with him?  Should I buy a house?  Should I move out of state?  Even (for me) should we have Italian food catered in for our wedding? You know, the usual – and good since so many of them are associated with joyous occasions – life stresses.

Stress?  Hmmm? What does that do to the kidneys? But wait, maybe it would be more prudent to explore just what stress is first.

According to the Free Online Medical Dictionary, “Stress is defined as an organism’s total response to environmental demands or pressures.” The site goes on to explain the description, causes, symptoms, diagnosis, treatment, alternative treatment, prognosis and prevention of stress.  While this was interesting reading, it’s not quite germane to the kidneys.  You can find all this information at: http://medical-dictionary.the freedictionary.com/stress

Alright.  We have those demands or pressures. (I distinctly remember my stress about whether or not to allow my youngest to attend a preforming arts high school across the bay from our Staten Island house in New York City.  It would mean a bus, ferry, and subway ride each way to the tune of an hour and a half… without me!)

But what is our organism’s total response?  You’ve got to remember we respond the same way whether the stress is positive (I always, without fail, experience a few minutes of stress before I go on stage or the cameras start rolling) or negative (like when we were told we need a new air conditioning system and we realized that meant the honeymoon will have to wait).stress

Ready? First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes (blood sugar) and hypertension (blood pressure) both play a part in chronic kidney disease.

If you still haven’t resolved the stress, additional hormones are secreted for more energy.

Still no resolution?  Not good.  Years, even weeks, of stress can “affect the heart, kidneys  {and doesn’t affecting the heart also affect the kidneys?}, blood pressure  {uh-oh, that also affects the kidneys.} stomach, muscles and joints.”  The comments within the brackets are mine.  Thank you to www.comprehensive-kidney-facts.com/stress-management.html for the rest of the information.

blood pressure 300dpi jpgFor those of you who want more technical explanations, I turned to eHow (I think I’m a little bit of a snob here since I’m surprised when I’m directed there in a medical search). According to www.ehow.com/facts_5929145_effect-stress-hormones-kidney-function.html, “The combination of vasoconstriction {that means ‘the narrowing (constriction) of blood vessels by small muscles in their walls. When blood vessels constrict, the flow of blood is restricted or slowed” http://www.healthscout.com/ency/1/002338.html } and increase in blood volume (because of water retention) raises  blood pressure, which can, over time, translate into chronic hypertension {high blood pressure}.  Persistent water retention as an outcome of prolonged elevations in stress hormones can also produce edema {swelling}.”

And that’s only a part of a total medical explanation.  There’s more that stress does to the kidneys but if you think I explained quite a bit in this part of the explanation, I need to tell you that this was the easiest part of the explanation to understand with some help.

Stress management seems to be part of keeping our already compromised kidneys from deteriorating even more.  Naturally, the next question should be what IS stress management?Book Cover

You’re already exercising half an hour a day (You are, aren’t you?) That’s to control your weight, blood pressure, cholesterol and triglyceride levels. To quote myself from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, “The greater your triglycerides, the greater the risk of increasing your creatinine.”  Me again: “Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.” So it’s no great surprise that exercise also lowers your blood pressure, even when it’s been raised by stress.

At http://www.holisticonline.com/herb_home.htm, you’ll find dietary suggestions to manage stress.  While I don’t agree with all of them (like caffeine, I am NOT giving up my two allotted cups of coffee a day, no way!  They make me feel far less deprived.) and you need to take your renal diet into account, most of them are well worth adhering to.

Smoking and alcohol (contrary to popular belief) will only increase your stress levels.  I’m wondering if we didn’t get the notion they would decrease stress from the movies or television.

Drinking water, but keeping within your daily fluid limits (mine is 64 ounces, which includes any liquid or frozen liquid such as jello), can also reduce stress as can anything that relaxes you: music, your pet, a warm bath, playing an instrument, etc.

There is stress even with a simple little backyard wedding like ours, which is why I’m so glad to be spending more time than usual with my daughters – a great stress reducer for me – and the new people they’ve been bringing into our lives lately.

Until next week,

Keep living your life!

It’s a Weighty Question

There’s a new addition to our family.  Oh, no, no!  Of course, with all our daughters, it’s natural to think it’s a grand child, but it’s actually a “grand” cat.  Let’s see now, we’re up to two grand dogs and three grand cats, plus our own Bella dog.  Little miss Annabelle is just twelve weeks old and cute as a button.  Thinking about cats led me to wonder if you knew that cats can also have CKD. And if you knew that some of the same treatments are used for feline CKD as for human CKD. That’s why you’ve got to be careful when you do your own research that what you’re reading deals with human, not feline, CKD.    

My daughter, Abby, brought Annabelle to the bar-b-q my fiance – Bear – threw to celebrate my 65th birthday yesterday (The bar-b-q was yesterday; my birthday was February 2 – Ground Hog’s Day – just in case you were wondering.) so everyone could meet the little cutie.

Being human, we overate, which got me to wondering about how hard it’s become for me to lose weight, much less maintain a healthy weight.  I remembered a blog I’d read on NPR way back in November and decided to share it with you.  I can’t be the ONLY one concerned with my weight, can I?

Hormones And Metabolism Conspire Against Dieters

by

There are some fresh insights from Australia that help explain why it’s so difficult for dieters to keep off the weight they lose.

Willpower will only take you so far, in case you haven’t run that experiment yourself. Turns out our bodies have a fuel gauge, not entirely unlike the gas gauge on our cars, that tell us when it’s time to tank up on food.

The gauge relies on hormones that signal to the brain when and how much to eat. But as Dr. Louis Aronne, who directs the comprehensive weight control program at Weill Cornell Medical College in New York, explains, the human fuel gauge can sometimes be way off the mark — especially for dieters.

A study just published in the New England Journal of Medicinedocuments a pretty extreme diet regimen that limited 50 overweight and obese Australian volunteers to about 550 calories a day for 10 weeks.

Most of them, though not all, actually stuck with the diet, and, not surprisingly, lost a lot of weight. While dieting they shed an average of nearly 30 pounds, or 14 percent of their body weight. At a year, they’d still kept a lot of the weight off, but, on average, their loss was down to 8 percent 15 months after the start of the study.

What happened to their hormones? The researchers measured a whole bunch of them, including insulin, leptin (an appetite suppressant) and ghrelin (a hunger stimulator) and found that more than year after the weight loss, the hormones were telling the people to keep eating — a lot.

As Aronne puts it, their internal gas gauges went down 65 percent instead of the 10 percent or so that would have been more in line with the weight lost. In essence, “they think they’re going to run out of gas  very, very soon.”

So it’s not just a lack of willpower that’s tripping people up. Their hormones are sending a strong, confounding signal to chow down.

What’s more, the study found that the metabolic  rate of the dieters remained low a year after the low-calorie diet  ended, making it even harder to burn off those calories.

While this might be a plausible explanation, I don’t find it all that comforting.  Yes, I do understand better why I’m having such a hard time with the weight, but I also know this means more exercise to burn off some of those calories my body is holding on to.  Guess I’d better learn to love exercise all over again, only exercise that accommodates arthritis this time.

You can find the blog at: http://www.npr.org/blogs/health/2011/11/03/141769832/hormones-and-metabolism-conspire-against-dieters?sc=fb&cc=fp

On another note, the lovely Aaron Milton of the FB page P2P for sufferers of any chronic illness posted an “Add to cart” button for the book there.  I’d like to do that to the blog and the book’s FB page, as well as my person website (www.gail-rae.com) but Aaron’s forgotten how he did it.  Anyone know how to do this?

Until next week,

Keep living your life!

Published in: on February 6, 2012 at 12:20 pm  Leave a Comment  
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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