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!

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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

So That’s How It’s Decided

SlowItDownCKD’s being honored as one of the best kidney disease blogs for 2016 has had some interesting results.  The first was the health and food writer’s guest blog about hydration for Chronic Kidney Disease on March 6th. Then it was the guest blog by the Social Security Administration’s Outreach Director. This week, it’s a telephone interview with Dr. Michael J. Germain, a nephrologist from Massachusetts, about some of the suggested guidelines in the upcoming KDIGO for 2016.

Got it:  backtrack. Let’s start with KDIGO. This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.” Anyone up for visiting their offices? What an excuse to go to Belgium!

Okay, now we know what the organization is and what it does, but why Dr. Germain? I asked the same question. Although he is not on the KDIGO panel of doctors who decide what the next year’s development and implementation will be, he is well versed with the topic having published or having been part of the writing for an overwhelming number of articles in such esteemed journals as the American Journal of Kidney Disease, Kidney International, and The Clinical Journal of the American Society of Nephrology, as well as contributing to textbooks, … and he could simplify the medicalese in the guidelines to simple English for this lay person.

If you think I remind you quite often that I’m not a doctor, you should read my emails to our liaison. State I’m not a doctor, repeat, state I’m not a doctor, repeat. She had the good graces to laugh at my insecurities.

The latest guideline updates have not been released yet, so both the good doctor (over 40 years as a nephrologist) and I (CKD patient and awareness advocate for a decade) were working off the draft that was released last August.

Dr. Germain also made it a point to ensure that I understand the guidelines are based upon expert opinion, not evidence. That made sense to me since he is not only a patient seeing nephrologist, but also a research nephrologist – to which his numerous publications will attest. With me being a lay person, he “had a lot of ‘splaining to do.” I had to admire his passion when discussing the vitamin D guidelines.

In the draft guidelines, it was suggested that hypercalcemia be avoided. I know; it’s a new word. We already know that hyper is a prefix meaning over or too much; think excessive in this case. Calcemia looks sort of like calcium. Good thinking because, according to Healthline at http://www.healthline.com/health/hypercalcemia:“Hypercalcemia is a condition in which you have too high a concentration of calcium in your blood. Calcium performs important functions, such as helping keep your bones healthy. However, too much of it can cause problems….”

This excerpt from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains how calcium works with vitamin D and phosphorous.

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.”

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 offers us more information.

“The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone. Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release. …  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm .”

As Dr. Germain explained, CKD patients break down vitamin D quickly since they have more of a catabolic enzyme, the enzyme that converts the vitamin D to an inactive form. Oh, right, catabolic means “any destructive process by which complex substances are converted by living cells into more simple compounds, with release of energy” according to Dorland’s Medical Dictionary for Health Consumers.

Here’s the problem: vitamin D can cause hypercalcemia. Dr. Germain phrased it, “In fact, the draft guideline recommends active vitamin D hormone therapy not to be routinely used in patients with CKD stage 3 or 4 due to increased risk of hypercalcemia and the lack of efficacy shown in studies.” Therefore, he urges nephrologists to wait until stage 4 or 5 to recommend vitamin D since hyperparathryoidism may lead to bone damage. But just as in any disease, it is harder to treat bone damage once it’s already there. His recommendation: Ask about your parathyroid level every three to six months and discuss the results of your tests with your nephrologist. By the way, his feeling – and obviously mine – is that preserving the kidney function is the most important job of the nephrologist and the patient.

I am eager to see the guidelines published so I can write more about them. The conclusion about vitamin D is based upon what nephrologists have seen in their practices since the last set of KDIGO guidelines were published in 2009. It will affect the way our nephrologists speak with us about our treatment, just as the other guidelines for 2016 will.

That will affect the way we self-manage. For example, I restrict my sun time to 15 minutes a day based on these findings. Take a look at how you self-manage. It should bring up a list of questions for you to ask your nephrologist at your next appointment.

You should also know the KDIGO deals with all stages of CKD including End Stage CKD and pediatric CKD.

Until next week,

Keep living your life!

The Three Musketeers

I was in Cuba last week with very sketchy internet, so it was not possible to post a blog. But for now, I was thinking about a friend – you know, one of those Facebook friends you pic_backbone_sidenever met but you feel an instant kinship with – who told me that her surgeon warned her that her recovery from the spinal fusion surgery she’d recently had would be slow because she has Chronic Kidney Disease.

CKD…bone healing. Let’s start slowly and work this one out.  First of all, what do the kidneys have to do with your bones?

I turned to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for some answers.

FullSizeRender (2)“Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy….Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body….Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

Whoa! Each one of those thoughts needs at least a bit more explanation. Let’s start with the jobs of the kidneys. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 has a paragraph that mentions some of them. I turned it into a list to make it more visual.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, kidneys5

help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.”IMG_2982

Another of those various substances in the blood they help to regulate is phosphorous. That’s where one of the connections between CKD and your bones lies. If your phosphorous is not being correctly regulated by your kidneys (since your kidneys are impaired), yes you do experience pain and broken bones, but did you notice that your body also diverts your necessary-for-bone-health calcium to regulate the other substances in your blood?

I wanted to know more about phosphorous so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I got a chuckle from seeing that I’d quoted from my first book in explaining how phosphorous works. I’d forgotten about that.

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

FullSizeRender (3)

Talk about multi-tasking. Let’s focus in on the calcium/phosphorous connection. Kidney Health Australia at http://kidney.org.au/cms_uploads/docs/calcium-and-phosphate-balance-fact-sheet.pdf explained this succinctly:

“When your kidney function declines, you are unable to get rid of excess phosphate. (Me here: that’s what we call phosphorous except when dealing with inorganic chemistry.)  The phosphate builds up in your body and binds to calcium, which, in turn, lowers your calcium levels. When your calcium levels get too low, glands in bloodyour neck (called the parathyroid glands) pull the extra calcium your body needs out of your bones. This can make your bones easy to break. The bound phosphate and calcium get deposited in your blood vessels. It can increase your risk of heart disease and stroke. It can also cause skin ulcers and lumps in your joints.”

So where does vitamin D come in? As was mentioned in SlowItDownCKD 2015,

“’Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.’ We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read the blogs about vitamin D?  Good!” IMG_2980

It sounds like vitamin D is in charge here. Let me get some more information about that for us. Bingo: DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/vitamin-d-and-chronic-kidney-disease/e/5326 was able to help us out here.

“Vitamin D is responsible for:

  • Building and maintaining strong bones
  • Keeping the right level of calcium and phosphorus in the blood
  • Preventing bones from becoming weak or malformed
  • Preventing rickets in children and osteomalacia in adults

vitamin d pillsToo much vitamin D can be toxic….”

Hmmm, the three work together with vitamin D as their captain.

I wondered what foods would be helpful for my friend in her healing process.

“Calcium

Milk, yogurt, cheese, sardines, spinach, collard greens, kale, soybeans, black-eyed peas, white beans and foods often fortified with calcium: breakfast cereals, orange juice, soy milk, rice milk

Vitamin D

Salmon, mackerel, sardines, tuna, flounder, sole, cod

Phosphorusfish

Ricotta cheese, barley, soybeans, sunflower seeds, cottage cheese, lentils”

Thank you to Weill Cornell Medical College’s Women’s Health Advisor at http://www.cornellwomenshealth.com/static_local/pdf/WHA0210_BoneHealth.pdf for the above information.

But, you know, it’s never just that easy. As CKD patients, we have limits of how much protein, potassium, sodium, and – wait for it – phosphorous we can eat each day. There is no socking in all the good stuff for kidney disease patients.

I can see why my friend’s surgeon told her the recovery might be slow. Something else that keeps the bones strong is weight bearing exercise, but how can she do that right now?

Until next week,

Keep living your life!

 

Renal Sally Port

Sometimes things just pop into a writer’s head for no reason at all. The title of this week’s blog did that over and over again. Okay, I thought, I’ll go with it.  Only one problem: I didn’t know what a sally port was and why I should be writing about a renal one.

BearandmeHmmmm, I did marry a military man. I asked. He explained but I wanted to see it in writing. Hence, this definition from The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/sally%20port:

1:  a gate or passage in a fortified place for use by troops making a sortieSally port

2:  a secure entryway (as at a prison) that consists of a series of doors or gates

Oh, now I got it. I immediately thought of Fort Wadsworth on Staten Island where I took my little children to Civil War reenactments. There were scary, dank areas between the port and the base which were enclosed between large old gates at either end. No sun got in and it echoed in there. It was a place of fascination and fear for my little ones. What did that have to do with our kidneys?

Then I thought of having visited the friend I’d written about in the hospital when his bipolar medications needed immediate adjustment. One door was unlocked for me, I entered. That door was relocked behind me and another unlocked in front of me. That was a sally port, too.

Our gaggle of grown children has told us enough about ‘Orange is the New Black’ that our interest was piqued. Then Bear read my Hunter College Dascha PolancoAlumni News Letter and saw that Dascha Polanco – a major character in the series – also graduated from Hunter, although not exactly the same year I did. Those seemed like good enough reasons to give the series a try. It was set in a prison with a series of sally ports to enter or exit.

Now it was more than clear. A sally port is a security feature to guard entry and exit. Good, one half of the renal sally port secret revealed. Now, do our kidneys have sally ports?

This is the structure of your kidney. It’s clear there are three ways in or out of the kidney: the veins, the arteries, and the ureters. Let’s take a look at each to see which, if any, is a sally port.  Blood Oxygen Cycle Picture 400dpi jpg

In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, it was explained that the renal (kidney) artery brings the unfiltered blood into the kidney:

What is it“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 renal 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.”

Well, what about the renal vein? Here’s how I explained it in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“If you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited Part 2from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.”

Well, if the renal artery is the sally port for the blood entering your kidneys, the renal vein sounds like the more important renal sally port since it’s allowing that poorly filtered blood back into your blood stream.

Oh wait, we forgot the ureter.   There’s an explanation from the presently-being-published SlowItDownCKD 2015 about that.

Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following.

SlowItDownCKD 2015 Book cover“A hollow organ in the lower abdomen that stores urine. The kidneys filter waste from the blood and produce urine, which enters the bladder through two tubes, called ureters. Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, passing through the prostate gland and then the penis. Also known as urinary bladder and vesical.”

Uh, no, there’s nothing in that description that indicates the urethra is a sally port.

So… the renal vein then.  How does this poor excuse for allowing filtered blood back into our blood stream affect us? (I do admit that it seems it’s more the fault of the damaged glomeruli than the renal vein acting as a sally port.)

For one thing, we become one of the one-in-three at risk for Chronic Kidney Disease … and that’s only in America. For another, our bodily functions differently as do our minds. I included this not-so-pleasing information from EurekAlert! in a 2012 post in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

Decreased kidney function leads to decreased cognitive functioning

“Decreased kidney function is associated with decreased cognitive functioning in areas such as global cognitive ability, abstract reasoning and DIGITAL_BOOK_THUMBNAILverbal memory, according to a study led by Temple University. This is the first study describing change in multiple domains of cognitive functioning in order to determine which specific abilities are most affected in individuals with impaired renal function.”

But there’s more. According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/factsheets/FastFacts, this is what is our kidneys are NOT doing for us as well as they should since we have CKD:

  • Regulate the body’s fluid levels
  • Filter wastes and toxins from the blood
  • National Kidney MonthRelease a hormone that regulates blood pressure
  • Activate Vitamin D to maintain healthy bones
  • Release the hormone that directs production of red blood cells
  • Keep blood minerals in balance (sodium, phosphorus, potassium)

I’m glad I got the term renal sally port out of my system, but I wish the news had been better.

Until next week,

Keep living your life!

Me and My Llama, Going to the Dentist Today

No, I’m not crazy and I’m not talking about one of the llamas living only a few miles from my home. Nor am I ignoring the rules of structure.

Today’s title is from the lyrics of a song sung on the children’s television show Sesame Street just about the time my first born (the ever interesting Ms. Nima Beckie)llama had her first dental appointment.  Believe me, it helped reduce her anxiety – and mine – about that appointment.

You guessed it.  I’ve been getting questions about Chronic Kidney Disease and dental health. I know some readers are saying, “Huh?” I did, too, until I did some research. (Maybe my brand should be, “I research so you don’t have to,” instead of “SlowItDownCKD”?)

By the way, in fulfilling an assignment for Landmark Worldwide’s Wisdom Unlimited course I discovered I first started researching in fifth grade.  My topic? Ladies in Waiting. My research results? Dismal.  I sure am glad those days of encyclopedias and library books only for research are over. Oh wait, I was writing about dental health.

You’ve already read my previous blogs about the safety of nitrous oxide (laughing gas) and Novocain, so today’s blog is going to be about the laughingconnection between CKD and dental problems.  If you remember that diabetes is the leading cause of CKD, you’ve already figured out that the diabetes itself could be causing the dental problems with people suffering from both CKD and diabetes.

But what about those of us who don’t have diabetes.  Why could we be prone to dental problems? I started my research with DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/dental-health-for-people-with-kidney-disease/e/4731

A study in the Journal of Clinical Periodontology reported that people with kidney disease and those on dialysis are more likely to have periodontal disease and other oral health problems than the general population. Buildup of bacteria in the mouth can cause infection. Because people with kidney disease have weakened immune systems, they are more susceptible to infections.

Journal of CLinical Perioldontolgy coverBone loss in the jaw can occur in those with kidney disease. Calcium imbalance contributes to loss of calcium from the bones resulting in weak bones. Weak bones can cause teeth to become loose and potentially fall out. The best way to help prevent bone loss is to make sure calcium and phosphorus levels stay within the goal range.

Oh, there is so much to go with there! I immediately started digging into What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for whatever it was that was tickling my memory and found it in the glossary on page 136.

What is itVitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.

We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read my blogs about vitamin D?  Good!  The rest of you, it might be a good idea to use the topic search to find and read them. You know, “I research so you don’t have to,” etc.

I’ve read again and again in the online support groups that there are major questions about controlling your phosphorous intake, specifically keeping it low. Keep that in mind when you think of CKD and dental health.

plaqueThe biggest part CKD plays in dental health and periodontic issues is that of lowering your immune system. Remember my writing about proteinuria, something you can develop with CKD? Quick reminder: this is just what it sounds like; protein leaks into the urine. The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin, that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity.

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.

How do you get an infection in your mouth in the first place, you ask. Think about plaque. This is what the National Center for Biotechnology Information, part of the National Institutes of Health, offered at http://www.ncbi.nlm.nih.gov/books/NBK8259/

Dental decay is due to the irreversible solubilization of tooth mineral by acid produced by certain bacteria that adhere to the tooth surface in bacterial communities known as dental plaque.interior of tooth

In other words, you eat and the acid in your food combines with bacteria to form plaque which then starts to demineralize your tooth enamel.  Usually, you have the antibodies in your immune system to prevent cavities… although we probably all know someone without CKD who doesn’t.  You, as a CKD sufferer, do not have the necessary antibodies.  The CKD has already compromised your immune system.

This is what the University of Maryland Medical Center at http://umm.edu/health/medical/reports/articles/periodontal-disease has to say about gingivitis and periodontitis.gingivitis

Gingivitis is an inflammation of the gingiva, or gums. It is characterized by tender, red, swollen gums that bleed easily and may cause bad breath (halitosis). Gingivitis can be treated by good dental hygiene, proper diet, and stopping smoking. Untreated gingivitis can lead to periodontitis.

Periodontitis occurs when the gum tissues separate from the tooth and sulcus (Me, here. That means  the space between the tooth and the gum.) forming periodontal pockets. Periodontitis is characterized by:

Gum inflammation, with redness and bleeding

Deep pockets (greater than 3 mm in depth) that form between the gum and the tooth

Loose teeth, caused by loss of connective tissue structures and bone

Plenty of space for bacteria to sneak in and attack your already compromised immune system.

I realize this is light weight research for those who are already suffering from these ailments, but hoped only to enlighten those of us who’d never even considered these possibilities and maybe, just maybe, help you understand just a bit better.

Say, if you live in Arizona, don’t forget about this:

free Path to Wellness health screening in Mesa at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30 this Saturday.

Until next week,Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

Keep living your life!

It’s Different

Sometime ago, I mentioned that Dr. Andrew Weill was my health guru.  I felt that way after my now deceased best buddy introduced me to the wonders of healthy eating. I miss her… and him.Dr. Andrew WEil

Why him?  As you know a healthy diet is not a renal healthy diet.  I still subscribe to his Nutrition Newsletter.  Today, vegetables and fruits were discussed including some excellent advice, but not for us as Chronic Kidney Disease patients.

Colorizing Your Diet

Phytonutrients – the chemical compounds in plants that appear to protect health, but are not established as essential nutrients – are generally concentrated in the skins of many vegetables and fruits, and are responsible for their vibrant hues, scents and flavors. Some phytonutrients are powerful anti-inflammatory agents; others modulate and enhance immune function, maintaining the body’s healing system while keeping abnormal inflammation in check; and still others boost antioxidant defenses to protect DNA and other cellular components from toxic insults that can cause direct harm, or can promote abnormal inflammation leading to tissue damage.

veggiesIn order to get the full range of protective phytonutrients, you should “colorize” your diet: include fresh produce from all parts of the color spectrum and aim for one serving per day (one-half cup cooked or one cup raw) of a fruit or vegetable from all the various color groups (red, red-purple, orange, orange-yellow, yellow-green, green and white-green).

Okay, we’re pretty sure CKD is an inflammatory disease so this would make sense.  We already have compromised systems, so we can use that immune function enhancement.  And we certainly won’t say no to something that can protect our cells and DNA from toxic insults.  So what’s the problem?

Let me answer it this way.  In Chapter 8: The Renal Diet of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease on page 73

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.  This is not the kind of balance that helps you stand upright, but the kind that keeps your body healthy.  Too much or too little of a certain electrolyte presents different problems.  Eating a larger portion than suggested in the renal diet of a low sodium, phosphate, protein or potassium food is the equivalent of eating a high sodium, phosphate, protein or potassium food.

So it’s not just eating the fruits and vegetables from each color group.  We need to analyze the electrolytes in each serving, especially the phosphate and potassium.  I also can only eat three servings of fruits and three of vegetables rather than the seven Dr. Weil recommends.Book Cover

Why the restrictions of the electrolytes?

Let’s take a look at potassium. Potassium is not a bad thing if you don’t have CKD.  It dumps wastes from your cells and helps the kidneys, heart and muscles to function normally.  However, too much can cause irregular heartbeat and even heart attacks. Your kidneys are not doing an effective job of filtering the potassium in your blood.  You have CKD.  This should explain the connection between CKD and cardiovascular events.

And phosphorous? I’ll quote from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease again here since I like the simple direct way I explained it on page 76.

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

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

water melonTo complicate matters even more, CKD patients are limited to different servings sizes of different fruits and vegetables, not the straight across the board ½ cup cooked or 1 cup raw of each Dr. Weil suggests.  For example: I can eat ½ cup of broccoli, but only 1/3 cup of raisins.  It depends upon the electrolytes in the particular fruit and vegetable and how much of that specific electrolyte you’ve eaten that day.

*sigh* I miss the days of having Dr. Weil as my health guru.

I found even more reviews and all five stars!  I am so enjoying this. Thank you all for the reviews.firworks

I was just diagnosed with Chronic Kidney disease Stage 4 a few weeks ago and I want to THANK YOU very much for this book. I put it on my Kindle. It is written in a way that one newly diagnosed and not in the medical field can understand.

Gail Rae has provided a good insight to the bombshell that befalls millions of unsuspecting humans worldwide. A CKD victim myself with years of experience under my belt, found the book extremely informative and a great reference when providing peer support to newly diagnosed sufferers of this silent killer.

So much good information for Chronic Kidney Disease Patients, from beginning to end. Thank you Gail Rae.

Ms. Rae knows, in my opinion, what she is talking about. She is direct-to the point-and the book is easily understood. She has just a hint of humor in her writing which keeps the reader engaged. Will keep this in my reference library.

Until next week,

Keep living your life!

Sunshine and Superwoman

sad womanToday is just one of those days: Bear’s car is in the shop so I got up early to take him to work, I turned on the dishwasher and nothing happened, I posted what I thought was a non-political message and got a political rant in return, answered a text only to find that my childhood friend thought I was ignoring her.  I’ve got a pretty happy life, so this was a disconcerting start of the day to say the least.

And then I opened the lab results for yet another blood test.  The one I wrote about two weeks ago was from August; this one is from last week. Should have saved it for tomorrow.

While the out of range results weren’t that much out of range, they were out of range.  Since this is one of those days, all of a sudden this became of great concern to me.

The Vitamin D, 25-Hydroxy, Total was 28.6 instead of within the 30.1 -100 normal range.  It would probably help you understand my mystification if I let you know that I’ve been taking 2000 mg. of vitamin D daily for several years.

I went running right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to find out why this is important.  Thank goodness, I have my office copy!  How could anyone memorize everything they need to know about their health, I wonder.Book Cover

This is what I wrote about vitamin D (page 48):

  • The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use.
  • Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy.
  • Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together.
  • Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.
  • Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.

I have been itchy lately, but since my phosphate levels have never been out of range, I concluded it was just dry skin due to our low to nil humidity here in Arizona.  Maybe it’s not.  We’d been keeping my calcium levels low – but in range – since a bout with kidney stones several years ago. I also definitely stay out of the sun, another source of vitamin D, since a

sun-graphic1pre-cancerous face lesion. I’d had a bone density test recently and that was just fine, but had I been doing all the wrong things for my kidney health in protecting myself from kidney stones and melanoma?

Something was nagging at me about vitamin D, so I turned to the glossary of my book (page 136) and that’s where I found it:

“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

Affects the immune system.  But how?  Science Daily at http://www.sciencedaily.com/releases/2010/03/100307215534.htm provided the answer I sought:

“Scientists have found that vitamin D is crucial to activating our immune defenses and that without sufficient intake of the vitamin – the killer cells of the immune system — T cells — will not be able to react to and fight off serious infections in the body. The research team found that T cells first search for vitamin D in order to activate and if they cannot find enough of it will not complete the activation process.”

How did I miss that?  And how many others knew that vitamin D didn’t just build strong bones as we’d been taught in primary school?

nsaidsI imagine my nephrologist will up my vitamin d dosage when I see him next week, but I still can’t handle the sun or take calcium supplements.  Maybe there’s some food that can provide vast quantities of this vitamin.

But no, according to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/:

“Vitamin D is a fat-soluble vitamin that is naturally present in very few foods, added to others, and available as a dietary supplement.”

Well, I wanted to know what those foods were even if they could only provide 20% of the needed vitamin d at most.  I clearly remembered salmon, tuna, and egg yolks, but what else?  Mushrooms, of course.  And???

I had to turn to the internet for more suggestions. Fit Day at http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-foods-rich-in-vitamin-d.html informs us that milk, cereal, and even orange juice are vitamin d fortified. For me, that’s a joke.  I’m lactose intolerant, don’t like cereal, and o.j. has too much calcium in it.

I like fish, but two to three times a week?  I’m not sure I want to spend my five ounces of protein that way so often during a week.  I don’t care for eggs much, but am willing to eat them once a week just to eat something healthy. Mushrooms are really tasty, but my ¼ cup doesn’t go very far.

You know, just from moving myself to write, it doesn’t seem like such a bad day after all.IMG_0058

Which leads me to a thought I want to share: action is the road out of unhappiness.  I’m sure someone has thought of that before, but I own it now.  To that end, I’m working on The Book of Blogs and two other long time writing projects as well as having committed myself to Landmark Worldwide’s Wisdom Course.

Of course I still take the time to exercise (ugh!), sleep, and rest, but these projects are fun… and they make me happy.  We are capable of so much more than we think we are.

Until next week,

Keep living your life!

The Dizzying Array of D Vitamins

I’ve been taking vitamin D supplements for seven years and apparently I’ve become complacent about them.  When Bear’s PCP prescribed vitamin D supplements for him, I piped up telling her we have mine at home and – if the dosage was what he needed -could probably just share the bottle.

Bear checked it when we got home and asked, “These are D3.  Can I take them?”  Bing!  Today’s blog. I didn’t know if he could take them, but did know it was time to research the D vitamins again.

Let’s start at the beginning.  What does vitamin D do for us? According to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease,  it “Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”  Short, sweet, and to the point.Book Cover

But I think we need more here. Why are there are different kinds of vitamin D? I went to Buzzle (my new favorite for easily understood renal information) at http://www.buzzle.com/articles/different-types-of-vitamin-d.html and hit pay dirt on my first foray.

There are five different types of vitamin D.  It seems to me that the source designates which number it is.  For example, vitamin D2 comes from plants, small invertebrates, and fungus (Pay attention, vegans.) while the D3 that I take is manufactured synthetically. The designation D1 is no longer used, D4 is such a recent discovery that not much is known about it, and D5 is not technically a vitamin.images

By the way, if your vitamin bottle doesn’t have a number after the D, that means it’s D2 or D3. You should know that the kidneys are responsible for transforming calcitriol into active vitamin D.

So, the sunshine vitamin is produced by our own bodies, but sometimes not at the rate we need it.  Hence, we are prescribed vitamin supplements.  As Chronic Kidney Disease patients, we need the extra vitamin D – whether from nature (D2) or synthetically produced (D3).

Why you ask? DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/the-abcs-of-vitamins-for-kidney-patients/e/5311 offers us this handy information:

Vitamin D Helps the body absorb calcium and phosphorus; deposits   these minerals in bones and teeth; regulates parathyroid hormone (PTH) In CKD the kidney loses the ability to make vitamin D   active.  Supplementation with special active vitamin D is determined by   calcium, phosphorus and PTH levels….

The site also suggests that vitamin D be by prescription only and closely monitored.  Since it was my PCP who prescribed it for me (seven years ago as a CKD patient) and for Bear (last week and not a CKD patient), I’m wondering if that caveat is for end stage Chronic Kidney Disease patients.

Notice we have a new term in the description above – parathyroid hormone. That’s not as odd as it sounds.  There is currently a controversy as to whether vitamin D is a vitamin or a hormone, since it is the only vitamin produced by the body.  Parathyroid hormone (PTH) explained:

The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone.

Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release.

fishAnd here you thought the kidneys worked alone to control these levels in the blood.  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm for correcting us. This National Institutes of Health site is a constant fount of pretty much any kind of health information you may need.

Okay, so let’s say you don’t take the vitamin D supplements you need.  What happens to you then? I jumped right on to the Mayo Clinic site at http://www.mayoclinic.org/vitamin-d-deficiency/expert-answers/FAQ-20058397, but found their answer too general for my needs: “Vitamin D deficiency — when the level of vitamin D in your body is too low — can cause your bones to become thin, brittle or misshapen.”

The irony of this is that we live in the sunshine state.  Only 20 minutes of sun a day could give us the vitamin D we need… and melanoma.  Having had a brush with a precancerous growth already, I’m not willing to take the chance; hence, the supplements.

Let’s not forget that vitamin D also helps absorb calcium and phosphorous, so it’s not just your bones that are at stake, important as they are. I went back to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-QuickFacts/ for more information. This is what they have to say:

Vitamin D is important to the body in many other ways as well. Muscles need it to move, for example, nerves need it to carry messages between the brain and every body part, and the immune system needs vitamin D to fight off invading bacteria and viruses.

Aha!  Keep in mind that as CKD patients our immune systems are already compromised and you’ll realize just how important this vitamin is to us.sun-graphic1

Let’s try it the other way.  Let’s say you are so gung ho on the benefits of vitamin D supplementation, that you take more than your doctor prescribed.  Is that a problem?  According to WebMD at http://www.webmd.com/osteoporosis/features/the-truth-about-vitamin-d-can-you-get-too-much-vitamin-d  it is:

Too much vitamin D can cause an abnormally high blood calcium level, which could result in nausea, constipation, confusion, abnormal heart rhythm, and even kidney stones.

To sum up, you may be vitamin D deficient.  Your blood tests will let you know.  If it is recommended you take vitamin D supplements, stick to the prescribed dosage – no more, no less.  While some foods like fatty fishes can offer you vitamin D, it’s not really enough to make a difference.

I get so caught up in my research that I often forget to mention what’s happening with the book or SlowItDown.  Back were discussed on this podcast http://www.stitcher.com/podcast/mathea-ford-2/renal-diet-headquarters?refid=stpr.  Renal Diet Headquarters interviewed me and I had a ball!  I must learn to be quiet just a little and let the interviewer get to ask the questions before I start answering them!

kidney-book-coverSlowItDown also has a new website at www.gail-rae.com. I would appreciate your feedback on this.

I hope you had a wonderful Valentine’s Day by yourself, with your love, your family, your friends, your animals, whoever you spent it with.

Until next week,

Keep living your life!

Book It!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

Neurology –> Neuropathy –> New To Me

With all the medical messes at my house lately, I hadn’t expected yet another one.  You’ve been reading about the established ones and how they affect Chronic Kidney Disease.  Here’s the new one: neuropathy.

I can’t tell you how long it took for me to simply pronounce the word correctly. I knew neuro comes from the Latin for nerve and pathy, also from Latin, is a “word-forming element meaning feeling, suffering, emotion, disorder, disease.” (Thanks for the help on pathy goes to The Online Etymology Dictionary at: http://www.etymonline.com/index.php?term=-pathy&allowed_in_frame=0.) There was no connect in my brain until my family doctor sent me to a neurologist.

Why you ask?  I wondered aloud in her office why I was feeling such tingling in both of my hands and, sometimes, my feet.  I found no discernible pattern to the tingling, although I could tell it was stronger in the hands than the feet.sad

Next thing I knew, I had an appointment with Dr. Maninder S. Kahlon at his Arizona Neurological Institute, better known as ANI, all the way out in Sun City.  That’s a bit away, but I agreed to the drive because Dr. Zhao recommended him so highly.  That’s also why I agreed to a male doctor when I usually prefer females.

This turned out to be a good move.  Dr. Kahlon is not only a good neurologist, but charming.  Now while that’s not usually my criteria for choosing a doctor, it was very necessary in this case since it was deemed necessary to have EMGs on both my upper and lower extremities.

EMG means Electromyography. Big help, huh? Back to basics (Yes, I do know how often I use that phrase, but let’s face it: you can’t build a house without a foundation.). According to eMedicineHealth at http://www.emedicinehealth.com/electromyography_emg/article_em.htm, “… electromyography involves testing the electrical activity of muscles. “

Next question: why in heaven’s name would anyone want to do that? I suspected it might have to do with a trapped nerve since I’d had carpal tunnel surgery 27 years ago and remembered a little bit of the process for diagnosing it.carpal tunnel

MedicineNet.com at http://www.medicinenet.com/electromyogram/article.htm answered that one for me: “When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity.”    

So did that mean I had carpal tunnel again?  Oh, sorry, carpal tunnel is when the median (middle) nerve in your wrist is trapped by the ligament.  Ligament surgery was pretty painful.  I’m hoping things have improved in the last 27 years… just in case, you understand.

Back to why.  I found an answer I could live with on my old friend The Mayo Clinic’s website at http://www.mayoclinic.com/health/emg/MY00107/DSECTION=why-its-done:

“EMG results are often necessary to help diagnose or rule out a number of conditions such as:

  • Muscle disorders, such as muscular dystrophy or polymyositis
  • Diseases affecting the connection between the nerve and the muscle, such as myasthenia gravis
  • Disorders of nerves outside the spinal cord (peripheral nerves), such as carpal tunnel syndrome or peripheral neuropathies
  • Disorders that affect the motor neurons in the brain or spinal cord, such as amyotrophic lateral sclerosis or polio
  • Disorders that affect the nerve root, such as a herniated disk in the spine”

I was floored.  I hadn’t remembered that both my family physician and Dr. Kahlon explained this.  I only concentrated on the possible carpal tunnel.  Come to think of it, it would have had to be something else in my feet.  Lesson learned; you need to keep reminding yourself to listen to your doctors’ explanations even if you think you know the information already.

Scuttlebutt had it that this was a very painful test, but Dr. Kahlon distracted me with a constant stream of chatter about CKD, neurology, families, and even Landmark while he worked on my lower extremities. By the next day, we’re weren’t chattering anymore but having serious discussions.  This distracted me so much that I was barely aware of what he was doing.

Thank you, Dr. Kahlon from a stoic coward, which means I bear with the pain, but I hate the thought of it. This time, pain wasn’t a problem.

Time to tell you what the good doctor actually did to me. I was asked not to use any lotions or creams the days of the tests.  When we were ready to start, Dr. Kahlon asked me to lay down for the lower extremities test and sit up on the examination table for the upper extremities test.

EMG needlesFrom my side, the tests were simple.  First, electrodes were applied to different parts of my legs or arms (depending on which were being tested that day). Once he had recorded the readings from the electrodes, he pierced my skin with needles.  I cannot say any of this hurt, but there was some discomfort.

Bear had the test years ago and had expected me to come home in extreme pain.  Instead, I went to meet a friend for coffee one day and to the Landmark Center the other.  It really didn’t hurt.

Dr. Kahlon gave me the results of both days’ tests as well as those of the blood test he’d ordered for TSH, B12, folate, and vitamin D.  Apparently, a deficit of any of these could cause the tingling I had. None of my readings for these elements were out of range.

What I really got a kick out of was watching him use Dragon Medical to write his notes.  That’s the doctors’ version of the same program I’ve been struggling with since Christmas!

So far, I don’t need anything.  He suggested a follow up visit.  I suggested ten years.  He didn’t laugh.  I suggested a year.  He still didn’t laugh and told me six months would do.  I guess being on the borderline of having carpal tunnel is more serious than I thought.

How does this impact CKD?  There is medication that can help, but I didn’t want to discuss it yet since it is eliminated via the kidneys. I’ve become pretty good at doing without medication these days.  More on that should it come to a point when it’s a necessity.

Book news!  I have just paid off the cost for printing the book.  I’m going to keep this little game up, though.  Now I want to recoup the cost for converting the book to digital form.  You know I’m still going to keep donating, no matter how much I recoup or not.  I am thankful to have the money to be able to do this.Book Cover

Until next week,

Keep living your life!

Put Your Back Into It!

The TableI thought we’d try something a little different this week. Instead of writing about the book as an add-on at the end of the blog, I’ll write about it in the very beginning. Sales are steady – which I find surprising because I have offered no book talks, no book signings, no advertising, no press releases, no public relations of any kind for well over a year. This must be due to word-of-mouth. For that I thank you all and want to keep reminding you that each time you buy a book, it allows me more income to spend on books for donation. Please keep up the good work there, readers

Today, it’s Bear’s turn to have his medical problem examined. Bear is actually Lieutenant Colonel Bear, U.S. Army Retired. (You do realize I’m having a little fun with his name here, right?) Twenty six years ago he had an accident while serving our country that cost him his coccyx and the fusing of two lumbar vertebra. It’s been progressively more difficult for him for him to go about his daily business,  but he keeps on keeping on.spine

When I first met him, I noticed that his body was tilted to one side but didn’t dwell upon it because we were at the age when bodies start to give out. I figured this was just the way that age was treating his body. As we became more and more friendly –  and then more and more loving –  and finally decided that we wanted to spend whatever time we had left together and even married (Thank you very much, Landmark), I asked him what the pills he was taking were. Some of them were painkillers. When I asked why, he told me about the surgery  and the fusing of the vertebra that was performed in Germany –  which had state of the art surgical practices at the time – while he was stationed there.

Some days, he was really in pain and some days he wasn’t. Several weeks ago his pain was so bad, Bear asked me if we could make an emergency appointment with my chiropractor, Dr. Cathy DeVore of Cactus Chiropractic in Peoria out here. He was desperate.  His pills weren’t working and he’d tried everything else: ice, heat, physical therapy, nothing had helped enough to keep the pain away. Dr. DeVore is the consummate professional and, as such, took an x-ray of his back before she even touched him. That’s what we first saw what looked like the top part of his spine sliding off the bottom part. This is one very smart chiropractor who told us we need to see an orthopedist. She could do nothing for my Bear.

aching backDr. Francis Tindall, my orthopedist, rushed Bear in for an appointment and quietly took me aside to tell me this was bad, very bad.  This is an orthopedic surgeon who never once recommended surgery to me the entire decade I’ve been seeing him. Now, he suspected there was no alternative for Bear.  My heart sank as I watched Bear’s face turn whiter and whiter while he struggled into the correct position for the MRI Dr. Tindall ordered.  It was as we had thought.  Not only was his spine twisted, but several of the lumbar vertebrae were, indeed, no longer aligned so they were on top of each other as they should be. The top of his spine turned right, while the bottom turned left. Dr. Tindall was emphatic: this was nothing for an orthopedist to deal with.  Bear needed a neurosurgeon.

I called each of the neurosurgeons on the list Dr. Tindall gave us, including the neurosurgeon who had operated on him.  The closest appointment I could get was three weeks away.  How was Bear going to make it?  No position was comfortable and his spine was in a precarious position. Luckily for us, one of the receptionists told us of a doctor who had just retired from his own military service and could make room in his schedule to see Bear in just a few days.  We thought we had the answer, but he suggested surgery as the way to go and Bear was not willing, despite his pain.  So the doctor sent Bear to pain management.

At Valley Pain Consultants in Scottsdale, Bear had two procedures one week apart.  Before each, he had to fast for six hours and abstain from taking certain types of medication. Each procedure consisted of two (the first time) or three (the second time) steroid epidurals to decrease the pain and inflammation.  The procedures included a local anesthetic before the injections and fluoroscopy {an x-ray of sorts} to confirm the needle was in the proper space. The injections did the trick.  But Dr. Spiro did not seem to believe Bear. Just a week later, we saw why.

Bear was in such agony that we rushed to our local emergency room for a 10 mg. morphine injection.  I can’t figure out if that caused Bear not to care about the pain anymore or if he didn’t feel it.  The P.A. at Arrowhead Hospital in Arrowhead (where else?) out here neglected to give my husband a prescription for an anti-nausea medication, though.  So he was in, shall we say, an altered state and nauseous as all get out.  You may remember my daughter Nima just had gall bladder surgery.  I was talking to her about her own recovery when she asked why Bear didn’t just take the anti- nausea medication.   Bingo!  A call to the E.R. and a trip to the pharmacy took care of the nausea.  the shot

Yes, as far as we know Bear will have surgery to have a sort of metal cage placed around three of his vertebrae to keep them aligned.  Yes, it is serious and dangerous – even in this time.  And, yes, we don’t know what’s going to happen.  So we’ll do what we always do: think positively and deal with it.

If Bear had Chronic Kidney Disease, he couldn’t take all those painkillers on such a sustained basis. For one, morphine is not something you can take if you have kidney disease. But there are other reasons you may not be able to take pain killers.  For example, I can’t take oxytocin because I have sleep apnea. Let’s consider today’s blog a cautionary tale to take care of whatever ails you immediately – as in before you need pain killers on a sustained basis – because you DO have CKD.

Before I sign off, I did receive my blood tests results including my vitamin D levels.  They’re right on target.  I guess I’ll have to accept that I am one of those people who do need vitamin D supplements.

Until next week,

Keep living your life!

Back to D

Those of you who know me personally know that this blog is a vacation for me right now.  Between Bear’s back issues, Nima’s upcoming gallbladder removal {that’s one way to rid yourself of a stone, aching backHmmm, that’s not funny, is it?} and my macula degeneration {which I persist in mispronouncing as macula conception for some reason}, it’s good to get back to D.  Vitamin D, that is.  Even more information piled up on my desk about it this week and that’s after not having enough room in last week’s blog to incorporate all the information I had at that point.

The following definition is from MedlinePlus @http://www.nlm.nih.gov/medlineplus/ency/article/002405.htm.  This is a service of the U.S. National Library of Medicine  From the National Institutes of HealthNational Institutes of Health which I trust and often cite in the blog:

“Vitamin D helps the body absorb calcium. Calcium and phosphate are two minerals that are essential for normal bone formation. Throughout childhood, your body uses these minerals to produce bones. If you do not get enough calcium, or if your body does not absorb enough calcium from your diet, bone production and bone tissues may suffer.Vitamin D deficiency can lead to osteoporosis in adults or rickets in children.”

So, as adults, we basically need vitamin D to keep our bones healthy, although it does perform other functions such as “regulates calcium and phosphorous blood levels … affects the immune system.” This last definition is from the glossary of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. By the way, thank you for keeping the sales going.  Every time I sell a book, it means another one I can donate. {Amazon.com or B&N.com. for digital or print.  Email me at: myckdexperience.com if you’d like a signed copy.}

I did manage to find out why my former nephrologist recommended supplemental vitamin D for me.  If he’d been as quick to answer the more important questions I had when I was his patient, he vit dmight not have become my former nephrologist.  But I do have to admit that as a newly diagnosed patient, I did not leave the poor man alone nor was I gentle in my demands for answers.  By the way, he was impressively gracious when I apologized for that behavior.

Apparently, vitamin D is routinely recommended for those over 60 since – statistically speaking – more than half the people in this age group have a vitamin D deficiency. Once you are tested, the level of the vitamin D in your blood determines whether you will be advised to take a low or high dose supplement. While the normal acceptable range is 30 to 100 {depending upon which lab you use}, mine was 29 back in 2009 when I started taking the supplements.  It did go up to 31 six months later. I still take the supplements to make certain it stays within range. 31 is so low in the acceptable range. I didn’t see it on any of this year’s lab results and intend to rectify that on my next lab date in two weeks.

As you know, I rarely write about children.  However, I noticed a MedPage Today article last week that suggested “There was an association between lower vitamin D levels and worse clinical outcome” in the need for pediatric heart-lung bypass.  It was far too technical for me, but you may want to take a look for yourself – especially since the article mentions pediatric studies “linking vitamin D deficiency with a number of condition such as asthma, acute respiratory infection, and cardiomyopathy {e.g. disease of the heart muscle}, as well as organ dysfunction and length of stay in the pediatric intensive care unit.” The address is: http://www.medpagetoday.com/Cardiology/HeartTransplanation/40384.

The day before the above article ran, MedPage Today ran another article discussing why low vitamin D levels in whites can lead to a heart risk, but the same low vitamin D levels don’t lead to heart risks in Blacks or Hispanics. I especially like Dr. Keith Norris’s comment on this “…reinforces what we’re seeing in medicine, [which] is a push toward personalized medicine where we’re really looking beyond what happens to a whole group of people, but how do we understand what’s happening at more [of] an individual level.” In other words, a person is a person is a person – even when it comes to their health.  You’ll find this one at: http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/40368races

MedPage Today seems to be carrying the blog today.  While there was no risk of heart disease due to low levels of vitamin D in Blacks, supplements could possibly lower blood pressure just a bit in Blacks.  So, if you don’t take them for one reason, you take them for another, I guess.  The researchers themselves are not certain, however, whether this study was long enough to prove anything. Still, I found it interesting and you might, too:  http://www.medpagetoday.com/Cardiology/Hypertension?38398.

Before you get down in the mouth about this information, let’s talk about vitamin D in kidney patients and gum disease {Get it? Down in the mouth? Gum disease? Oh well.} This time, the information is specifically for those with chronic kidney disease (hello!). According to Dr. Jessica Bastos back in April of this year, “This association seems to be mediated through an impairment in clearing bacterial infection due to a decrease in cathelicidin {e.g. antimicrobial polypeptides} production.” There is a purported correlation between low levels of vitamin D and low levels of cathelicidin production.  I don’t know about you, but I intend to print the blog and check that I took my vitamin D today.  My dentist is a nice guy, but this is my mouth we’re talking about. Take a gander: http://www.medpagetoday.com/MeetingCoverage/NKF/38254.

I have many more articles in front of me, so I’m going to simply list the areas in which low vitamin D is involved:Book signing

  • cardiovascular
  • chronic kidney disease {the purpose of this blog, lest we forget}
  • health hip fracture risk
  • hepatitis B {Have you decided to take the inoculation against this?}
  • hypertension
  • stroke

Got how dangerous low levels of vitamin D can be?  Good.  Be ready to be confounded.  Another study links low levels of vitamin D with long life.  The  studies suggest, ” that low serum levels of vitamin D are a consequence rather than a cause of disease,” according to its authors.  This is a must read: http://www.medpagetoday.com/Genetics/GeneralGenetics/35767.

Wow, this could have been a four part blog.  Let’s hope you’re confused enough about the benefits {or lack thereof} of vitamin D supplementation to do a little research of your own.

Until next week,

Keep living your life!

You, You’re Driving Me Crazy: Dedicated to Vitamin D.

I hereby declare today Vitamin D Day. Why? Well, you see, I had this question from a reader about the conflicting reports on the value of taking supplemental vitamin D.  I had hoped my research would have some kind of defining conclusion.  Hah!  Be prepared to have your head spin.sad face

Last October I read a New York Times blog by Nicholas Bakalar regarding a study questioning vitamin D supplementation. According to University of Aberdeen’s senior lecturer and leader of the study, Helen M. McDonald, “The study actually shows that vitamin D does not protect you against heart disease….”

That sounds straight forward enough.  However, the study also discovered no effects on C-reactive protein [a protein in the blood which may indicate artery inflammation], LDL [low density lipoprotein – the kind that forms blockages in your arteries], HDL [high density lipoprotein which cleans out the blockages just mentioned], total cholesterol [all the fat in your blood], triglycerides [the major form of fat the body stores], insulin production, or blood pressure. Whoa, ladies and gentlemen.  That is quite an array of areas there.  You can find this blog at: http://well.blogs.nytimes.com/2012/10/22/study-questions-benefit-of-extra-vitamin-d/?smid.

Wait a minute.  In November of last year, Washington University School of Medicine published a study in the Journal of Biological Chemistry that indicates vitamin D could prevent atherosclerosis [clogged arteries], an important aspect of heart health, in diabetics. The authors of the study, Dr. Amy E. Riek and Dr. Carlos Bernal-Mizrachi, made a point of saying they did  not know if vitamin D is capable of reversing atherosclerosis in diabetics.  But doesn’t that contradict the previous article’s finding that vitamin D’s effect on diabetes is questionable?  Decide for yourself: plaquehttp://www.eurekalert.org./pub_releases/2012-11/wus0-vdm111312.php. .

In a more germane article printed that same month, Loyola University Health System announced that under the Institute of Medicine’s new guidelines, only 35.4 % of Chronic Kidney Disease sufferers would be deemed as having insufficient levels of vitamin D rather than the 76.5% under the older guidelines. These numbers are based on a survey of patients. Keep in mind that CKD has been linked to low vitamin D levels.

The percentage of healthy people who would no longer be considered as having insufficient levels of vitamin D would also drop by more than half. Here’s the kicker: while it is accepted that vitamin D is needed for your bones, there is a question about its role in “…cancer, heart disease [ that’s what the blog above discussed], autoimmune diseases and diabetes [what the study above deals with]….” What concerns me is that too much vitamin D can adversely affect the heart AND the kidneys.  This  article was a bit more medical in terminology than I’m comfortable with so I’d suggest you take a look at it yourself: http://www.eurekalert.org/pub_releases/2012-10/luhs-n8m101812.php.

In March of this year, the Journal of the American Society of Nephrology published a study stating, “Vitamin D supplements may help maintain kidney function in transplant recipients.”  Okay, so with the new guidelines you may be one of the close to 50% of Chronic Kidney Disease sufferers who no longer need vitamin D supplementation… until you receive a transplant?? Take a gander: http://www.eurekalert.org/pub_releases/2013-03/ason-Ivd032213.php.vitamin d pills

While you read this particular paragraph, keep the first study in mind – the one that decided vitamin D supplemental had no effect on blood pressure. In April, I read a NPR [National Public Radio] blog about The Brigham and Women’s Hospital’s small study with Blacks as their subjects.  This one found that vitamin D may lessen the risks of high blood pressure in Blacks.  Notice none of the other studies mentioned Blacks.  I really like this one because Blacks have a higher incidence of Chronic Kidney Disease and, as we know, high blood pressure is one of the leading causes of CKD. It’s written in laymen’s terms so you might enjoy reading it: http://www.npr.org/blogs/health/2013/04/05/175258469/study-hints-vitamin-d-might-help-curb-high-blood-pressure.Black

Concerning, diabetes, another New York Times blog by the same author as the first one states, ” A new study has found a strong correlations between low vitamin D blood levels and Type 1 diabetes.” Later in the blog, one of the authors of the study made a connection between Type 1 diabetes and other diseases that are prevented by vitamin supplements.  This was published the same month that the first Eurekalert article which stated the opposite was. You can find this one at : http://well.blogs.nytimes.com/2012/11/26/low-vitamin-d-level-tied-to-type-1-diabetes/?smi

While we’re on the topic of diabetes, on February 5th of this year, Nick Tate wrote on the News Max Health site, “New Harvard University research has found that adequate levels of the ‘sunshine vitamin’ cut the odds of developing adult-onset type 1 diabetes by half.” I wonder if he’s using the Institute of Medicine’s new guidelines? And what about the same Institute of Medicine’s claim that vitamin D’s role in diabetes is questionable?  You can read about the study – funded by the National Institute of Neurological Disorders and Stroke – at: http://www.newsmaxhealth.com/Diabetes/Vitamin-Prevent-Diabetes/2013/02/05/id/489047

So now we leave heart disease, Chronic Kidney Disease, diabetes, and transplantation to move down to the knees.  I have never heard that vitamin D can help with arthritic knees, but apparently others have. In July of this year, Medpage Today  referred to an article published on January 8th. It discusses a Brigham and Women’s Hospital “2-year trial [that] contradicts observational studies that had suggested higher levels of vitamin D might slow the progression the disease [knee osteoarthritis].”  Since I am one of the lucky ones (notice the dripping sarcasm) to enjoy this disease, I was surprised to come across this trial.  I do acknowledge the connection between vitamin D and bone health, but never thought of it as something to reverse bone damage.  Want to read the article for yourself?  Go to: http://www.medpagetoday.com/Rheumatology/Arthritis/36757?utm_content=&utm_medium.

This blog is getting too long, so we’ll continue with the vitamin D controversy next week.July 4th

On the home front, nothing much is happening since we’re dealing with Bear’s back issues.  That made for a quiet 4th of July weekend.  None of the kids was available so we made a teeny little bar-b-q just for us… and I was not quite well for three days after.  When you’re on the renal diet, you might be able to indulge a little here or there, but not a whole lot at one time.  Here’s hoping your Independence weekend was a glory of red, white and blue celebration.

Many thanks to Alex Gilman who tried desperately to cook us a dinner that was within my renal diet guidelines without even knowing what they were.  I was very taken with his efforts.

Until next week,

Keep living your life!

Weight A Minute

4weddingWe’ve been married for one week and one day (and no, I don’t feel any different.  Being married to Bear is just as delicious as co-habitating with him).  We just got our pictures back from our future son-in-law and videographer, Sean Rasbury.  They’re beautiful.  We’re beautiful.   Our family is beautiful. Our friends are beautiful. The wedding was beautiful.

But, you know it’s important to keep your weight down when you have Chronic Kidney Disease and the pictures were a rude awakening for me.  I thought I was doing just that.  Hah! I was not the beautiful blushing bride, but the beautiful bountiful bride.

Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obiously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates the treatment of, ckd.

Look at my wedding picture again. Based on my BMI (Body Mass Index) I am obese. This is from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“The BMI formula was something about your weight divided by the sum of your height in inches squared times 703.  I think. I have researched and researched this,

but still do not understand it.  I did discover later on that there are free BMI Calculators online, such as the one on the United States Department of Health and

Human Services’ website [http://www.nhlbisupport.com/bmi/bminojs.htm], so you really only need to know our height and weight. If I’d known that at the time,

I just might not have felt so overwhelmed.”

You can order the book in either print or digital at: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease (which is Amazon) or http://www.barnesandnoble.com/s/What-Is-It-And-How-Did-I-Get-It–Early-Stage-Chronic-Kidney-Disease?keyword=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease&store=allproducts (which is Barnes and Noble).  If you’d like an endorsed print copy, just email me at myckdexperience@gmail.com or call (623) 266-2609.

You can see from the family wedding picture that some of us are naturally thin. They don’t seem to watch their diets or exercise, either. I notice that they need to start doing just that once they approach 30.  I sort of remember that being the case for me, too.  Then again, I danced all the time, studied Judo, ice skated, skied, and basically was moving all the time.  My diet was another story.  I didn’t have ckd at the time and, like any other 20 something, thought that I was immortal.  family

Here’s a chart from Health Travel Guides that offers the other benefits of losing body fat.  You can see it’s an overall positive action to take for your body’s health.

whenyoulosefat

Medical News Today published this information in an article:

“A University of Bristol team, with funding from the British Heart Foundation (BHF), has now identified that a target found to be critical in the brain’s regulation of body weight,

is also crucially involved in the development of obesity-associated conditions. Researchers describe the mechanism behind a key molecule, known as melanocortin-4-receptor (MC4R),

whose mutation or loss in both human and animal models has shown to cause severe obesity with type 2 diabetes.”

The title of the article is Scientists Identify Culprit In Obesity-Associated High Blood Pressure. Hmmm, high blood pressure (hypertension), another contributor to ckd. This is preliminary research so we can’t just pop a pill that will magically control our weight.  We need to do that ourselves. You can read the article for yourself at: http://www.medicalnewstoday.com/releases/255768.php.

If you read another article at: http://news.health.com/2013/02/06/vitamin-d-loss-attributed-to-obesity/, you’ll find that obesity also may lead to a drop in vitamin D, something we can’t afford as ckd patients.  This is the vitamin that regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks.  It also affects the immune system. If you’re like me at stage 3A, you’re already taking vitamin D supplements since we need to control phosphorous levels, which means we cannot afford to lose any more of it.

Yet another caution about obesity from Medical News Today is not only for ckd patients but any woman of child bearing age.  The headline says it all: Obese Women Taking Certain Contraceptive May Be At Increased Risk For Type 2 Diabetes.  Keep in mind that diabetes, as mentioned before, may contribute to the development of ckd.  Want to read the entire article?  Here’s the link: http://www.medicalnewstoday.com/releases/256099.php

thAccording to DaVita at http://www.davita.com/kidney-diet-tips/?p=1872

  1.                                        “… people with a BMI 35 or greater had higher death rates than normal weight, overweight and mildly obese patients, so becoming more obese is a concern.
  •                                         Obese people are more likely to have chronic diseases like diabeteshigh blood pressure and heart disease, which could mean they receive more medical care
  •                                                                                                                                                                                                                                       and monitoring compared to normal weight people.
  •                                         Excess weight may be a source of energy during illness or injury—a benefit the lean person does not have.
  •                                        A person can have different degrees of  health and fitness regardless of their BMI or weight. Factors such as nutrition status, diseases, health history, where
  •                                                                                                                                                                         fat is stored (abdominal  vs. lower body), eating habits influence your level of fitness.

The message here is that while excess weight may not affect your general health and may even be of some benefit during times of ill health, we have a chronic disease and cannot afford the luxury of the benefits in being overweight.

We offered no goodies except the wedding cake at our shindig.  Our dinner was all pasta based with plenty of salad and an additional side of string beans.  We had enough champagne for a toast.  That’s it.  We were able to provide the usual wedding dinner with options for those with ckd (ME!). The only thing we each had to control is how much of each we ate.taste the cake

We spent time enjoying instead of gorging.  All our daughters took part in the ceremony:  Abby Wegerski sang Marry Me and Nima Rosensfit sang I Would Love To Be Your Last, Lara Garwood was in charge of the candles for the family blending part of the ceremony, and Kelly Garwood read ‘Corinthians.’  Bear and I wrote our own vows and tailored the officiant’s vows to our beliefs.

Our audience consisted of only Janet Le, my long time buddy from Staten Island; Karla Lodge, my Arizona buddy; and Alex Gilman, Lara’s beau, because I wanted to become Bear’s bride under the palo verde tree in our backyard with only our dearest and nearest in attendance – that, of course, includes Sean Rasbury, who is Kelly’s fiancé, and Michael Payne who was Bear’s best man.  Even Bella, our dog, showed up for the ceremony wearing her new red collar with the red hibiscus the Kurrs and Doris Widmayer had brought back from Hawaii for me.

More pictures next blog and further descriptions for what we did for fun, instead of gorging, at the reception.

Until next week,

Keep living your life.

Let The Sun Shine…

Here we are in lovely, warm, sunny Florida.  But you just left lovely, warm, sunny Arizona, you may say and you’d be right.  We’re here to see family and friends, one of whom is over 65 and has dropped over 60 pounds via exercise and diet.  Jo is my inspiration!

I’ve wanted Bear to meet my brothers for a bunch of years now. This is an opportunity for him to meet one of them, Paul Peck, and his gracious wife, Judy.  Come to think of it, I haven’t seen them since Abby’s college graduation.

Then there’s my New York cousin, Nina Peck and her partner, Sandra, who just happened (ha ha) to move five minutes away from my brother.  That’s another one I haven’t seen in a bunch of years.

Of course, I get to bring the book to Florida, too.  Some of the medical departments of the colleges there are following me on Twitter, but I don’t think any clinics or private sector doctors are.  Good, another way for me to spread the word. The Table

Oh, right, hot weather and CKD. The rules for CKD patients in potentially hot weather are the same anywhere in the world.

According to Dr. Leslie Spry, a National Kidney Foundation spokesperson, “Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes less effective at dispersing body heat, and the core body temperature begins to rise.” The entire article is at: http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

We don’t worry about humidity in Arizona, but this is Florida.  No disrespect meant, but I clearly remembering telling my mother, Belle Peckolick, that Florida felt like taking a shower and not drying off.  She was living there at the time and just laughed.  She’d been a New Yorker, so the humidity was a higher dose of what she was used to.

Now’s the time to wear the hat you (meaning I) bought for just that purpose, but forgot was in the trunk of the car.  Otherwise, melanoma just might be a possible drawback of a day in the sun.  Melanoma.com tells us,

“Melanoma is the most serious type of skin cancer. It begins in skin cells called melanocytes. Though melanoma is predominantly found on the skin, it can even occur in the eye (uveal melanoma).

Melanocytes are the cells that make melanin, which gives skin its color. Melanin also protects the deeper layers of the skin from the sun’s harmful ultraviolet (UV) rays.

melanomaWhen people spend time in the sunlight, the melanocytes make more melanin and cause the skin to tan. This also happens when skin is exposed to other forms of ultraviolet light (such as in a tanning booth). If the skin receives too much ultraviolet light, the melanocytes may begin to grow abnormally and become cancerous.”

You are not only heating up your body by being out in hot weather, but exposing yourself to the sun’s ultraviolet light. Use that hat to shade some of your body.

DaVita reminds us to use sunscreen with at least 15 spf.  Don’t forget if you’re swimming – which this aqua-phobe won’t be although I’m looking forward to walking on the beach – you need to slather more on after each dip. You can read more of their hot weather tips, some for dialysis patients, at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894

You know you need to drink water during hot weather, but is there a difference among waters?  Yes, there is.  As a CKD patient, your fluid intake is probably restricted (mine is 64 oz. which includes coffee, tea, juice, ice cream, sherbet, and Jell-O.  You get the picture: anything liquid or liquid in a frozen or jelled form.)

Mary Ellen Herndon, a renal nutritionist warns us, “Many drinks labeled as water are loaded with sugar and empty calories. Even though these drinks have ‘water’ in their name, drinking them regularly may cause weight gain and may increase your risk of obesity.”  For the rest of the article, go to http://www.kevinmd.com/blog/2012/08/6-tips-choosing-water-drink.html?utm_medium=twitter&utm_source=twitterfeed

According to WebMD at http://www.webmd.com/a-to-z-guides/chronic-kidney-disease-home-treatment, we also need to be careful about exercising during the hot weather.  I don’t mean stop, simply make certain you are not becoming dehydrated.  Stay away from energy drinks!  As an older adult, I’ve become aware that I can dehydrate more easily when I exercise – especially since my kidneys are not working at top capacity.

Don’t be intimidated by the sun.  We can benefit from the sun if we’re cautious about it. Fifteen minutes or so a day of sunshine can elevate your vitamin D naturally.  Wearing a shirt to cover some of your body can help you protect yourself from the ultraviolet rays while you’re indulging in some free vitamin D production.

Be sure to protect your eyes, too.  This is a direct quote from the DaVita site mentioned above: “Sunglasses protect your eyes in the same way that sunscreen protects your skin from harmful sun damage. Your sunglasses should block at least 99% of UVB rays and 50% of UVA rays. Wraparound sunglasses and other styles that completely cover the eyes are best.” This information is good for anyone, chronic kidney disease sufferer or not.wraparound sunglasses

Excuse me while I see if I can interest any of my friends or family into visiting Epcot with  me.

Until next week,

Keep living your life!

So Is It A Good Thing Or Not?

I cannot begin to tell you how eager I am for the second cataract surgery.  The repaired eye sees so well that the other one seems worse than it really is.

In my big ten minutes of reading at a time while the repaired eye continues to heal, I’ve seen the same word over and over again. It isn’t a word I usually expect to see: statin.  According to Macmillandictionary.com, it means “a drug that is used to reduce the amount of cholesterol in the blood.”

 This class of drugs can have a different name in other countries. It preforms its miracle by inhibiting a key enzyme while encouraging the receptor binding of LDL-cholesterol (Low-density lipoprotein which causes health problems and cardiovascular disease), resulting in decreased levels of serum cholesterol (that’s cholesterol in the blood stream) and LDL-cholesterol and increased levels of HDL-cholesterol.

I don’t know about you, but I went running back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to remind myself what that all means. From the glossary, I understood that dyslipidemia means abnormal levels of cholesterol, triglycerides or both. Well then, what does HDL-cholesterol do? What else? This so called good cholesterol fights LDL-cholesterol.  This is important because what we call the bad cholesterol (LDL-cholesterol) can build up in your arties and may even block them eventually. Look at page 97 in the book for a clear diagram of just how this affects your blood pressure.

Let’s get to the articles now. One from this past June suggests that statins may cause fatigue and that women may experience this more than men. Notice the mention of vitamin D production in the article at:  http://www.ama-assn.org/amednews/2012/06/25/hlsb0626.htm

Study links statin use to fatigue

One possible reason is that reducing cholesterol levels can lead to the production of less vitamin D.

All right, I’m a woman.  I take statins. I’m fatigued, but I take vitamin D supplements.  Back to the sleep apnea exploration for me.

Then in July, only one month later, this article appeared in The New York Times:

 Women May Benefit Less From Statins

Many studies have found that statins reduce the risk for recurring cardiac problems, but not the risk for death. Now an analysis suggests that the drugs may reduce mortality significantly only in men.

You can read more about this at: http://well.blogs.nytimes.com/2012/07/02/women-may-benefit-less-from-statins/?partner=rss&emc=rss

Back in February of this year, The New York Times was warning us about the possible side effects of statins, albeit rare ones:

Safety Alerts Cite Cholesterol Drugs’ Side Effects

Federal health officials on Tuesday added new safety alerts to the prescribing information for statins, the cholesterol-reducing medications that are among the most widely prescribed drugs in the world, citing rare risks of memory loss, diabetes and muscle pain.

The entire article is located at: http://www.nytimes.com/2012/02/29/health/fda-warns-of-cholesterol-drugs-side-effects.html?_r=3

Hmmm, my primary care doctor has been monitoring me for muscle pain since we met.  She has already changed my statins three times in the last five years.  As for the memory loss, who can tell?  I’m at that age, you know. Diabetes can be a problem.  You take statins to reduce your LDL cholesterol so that you don’t end up with high blood pressure, but it may cause diabetes. Which is the lesser of the two evils? Read on for help from USA Today this month to make that decision.

Benefits of cholesterol-cutting drugs outweigh diabetes risk

The benefits of taking cholesterol-lowering medications outweigh the increased risk some patients have of developing diabetes from using the drugs, a report out Thursday says.

Patients who were at higher risk for diabetes were 39% less likely to develop a cardiovascular illness on statins and 17% less likely to die. Patients who were not already at risk for diabetes and were taking statins had a 52% reduction in cardiovascular illness, and no increase in diabetes risk.

“When we focus only on the risk (of diabetes) we may be doing a disservice to our patients,” says lead author Paul Ridker of Brigham and Women’s Hospital in Boston. “As it turns out for this data, the hazard of being on a statin is limited almost entirely to those well on their way to getting diabetes.”

Here’s where you can find that article: http://www.usatoday.com/news/health/story/2012-08-09/statins-diabetes/56920686/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed:+UsatodaycomHealth-TopStories+%28News+-+Health+-+Top+Stories%29

Also this month, there was good news about statins:

 Statins reduce pancreatitis risk

Statins reduce the risk for pancreatitis in patients with normal or mildly elevated triglyceride levels, say the authors of a large meta-analysis.

The address?  It’s: http://www.news-medical.net/news/20120824/Statins-reduce-pancreatitis-risk.aspx

My all time favorite appeared in The New York Times as a blog in March of this year.

Do Statins Make It Tough to Exercise?

For years, physicians and scientists have been aware that statins, the most widely prescribed drugs in the world, can cause muscle aches and fatigue in some patients. What many people don’t know is that these side effects are especially pronounced in people who exercise.

Do read the rest of it at: http://well.blogs.nytimes.com/2012/03/14/do-statins-make-it-tough-to-exercise/?smid=tw-nytimeswell&seid=auto

I got this smug sense of satisfaction at a hit against exercise… until I realized I still had to exercise so I could keep my organs healthy.  Damned if you do, damned if you don’t.

Being in the midst of cataract surgeries, I could not help myself.  I had to include this month’s article from Medical News Today even though it doesn’t mention ckd. The article’s address is: http://www.medicalnewstoday.com/articles/248785.php

Cataracts Risk Associated With Statins    
     
     

A new study, appearing in the August issue of Optometry and Vision Science , has found that patients might have an increased risk of developing age-related cataracts if they use cholesterol-lowering statin drugs.

We know I’m older and I use cholesterol lowering statins.  But I am getting better eye sight than I ever had (I think).

Note: I may have been too quick to condemn Medical ID Fashions.  The rhodium replacement bracelet they sent when I complained the first bracelet of brass, copper and silver both tarnished and wasn’t waterproof seems to be doing well.  It’s too shiny for me, but it is waterproof and hasn’t tarnished.  I also discovered this company donates $2.00 of every purchase to one of six charities. Maybe they just didn’t receive my first and second emails.

Before I forget, the book is not only available in Europe now, but it’s on sale in India too. Amazing.

I’ve given you enough homework to last more than a week!  Uh-oh, getting back into teacher mode.

Until next week,

Keep living your life!