Flanked by the Pain

What a whirlwind week it’s been here in Arizona.  We’ve taken the Red Rock Jeep Tour in Sedona, lunched at The Asylum in Jerome, and visited The Palace Restaurant and The Sharlott Hall Museum in Jerome, all while we stayed in The Vendome Hotel in Prescott.  We’ve even been to Arizona Broadway Theater for lunchtime theater and to Sustainable Blues for a dance lesson.  No wonder my brother and sister-in-law had to go home to get some rest.

The only thing consistent about this past week, like every week since I’ve been diagnosed with Chronic Kidney Disease is no kidney pain.  Yet, a reader has told me she experiences pain in her kidneys although her doctors tell her this is not a symptom of kidney disease.  Unfortunately, I neglected to ask what kind of kidney disease she has when I offered to blog about this for her.

When I started researching, I found there are many different causes for kidney pain.  MedicineNet.com at http://www.medicinenet.com/kidney_pain/page3.htm offers a list of these causes:

“Some of the major underlying causes of kidney pain or flank pain are as follows:

• Urinary tract infections, mainly pyelonephritis
• Kidney stones
• Diabetes
• Glomerulonephritis
• High blood pressure
• Polycystic kidney disease (congenital)
• Congenital malformations in the renal system resulting in complete or partial blockage of urine flow
• Drugs or toxins that harm kidney tissue (for example, pesticide exposure or chronic use of medications such as ibuprofen [Advil, Motrin, and others])
• Drinking alcohol may cause acute or chronic flank pain; the pain source, depending on the individual, may be from the kidneys or the liver.”

Wow!  And doctors say kidney pain is not a symptom of CKD?  Notice the two leading causes of CKD on this list: diabetes and high blood pressure. Oh, and the “drugs or toxins that harm kidney tissue….”

I clearly remember being asked if I had flank pain when I was first diagnosed… and I clearly remember asking where the flank was.  For those of you like me who don’t know, the primary definition of flank is “the fleshy part of the side between the ribs and the hip.”  Thank you for that Merriam Webster Dictionary at http://www.merriam-webster.com/dictionary/flank.

Then, never having experienced it myself, I had to know what it felt like – or at least find a description of the pain. eHealthStar (which is a new site for me) at http://www.ehealthstar.com/what-does-kidney-pain-feel-like.php describes it as:

• Sudden (acute) or persistent (chronic)
• Mild or severe
• Sharp, dull, throbbing or, rarely, cramping or colicky
• One sided or both-sided.

Kidney pain is often, but not always, associated with tenderness in the kidney area.

Wait a minute; that’s covers just about every kind of pain you can think of.  So if you have a pain in your flank area, you have CKD – right?

Wrong.  Remember the list of other possible causes.  We’re familiar with kidney stones – a crystallization of mineral and acid salts that form a stone in the kidneys – which are not CKD.  The ‘C’ in CKD is for chronic or long term, in this case long term deterioration of your kidney function.

Drinking, while it may affect CKD, is not CKD. If you drink and experience flank pain, it does not mean you have CKD nor that you’re going to develop CKD.  Although, it might not be a bad idea to be tested should you have your suspicions.  Speak to your primary care doctor about this.

Numerous urinary tract infections may be a cause of CKD, but a single urinary tract infection may not.  Even if you’ve had numerous UTIs, this does not mean that the pain from these indicates CKD.  Although….

Pyelonephritis, an infection of the kidneys is a more serious UTI, as explained by WebMD at http://www.webmd.com/a-to-z-guides/kidney-infections-symptoms-and-treatments

“Most cases of pyelonephritis are complications of common bladder infections. Bacteria enter the body from the skin around the urethra. They then travel up the urethra to the bladder.

Sometimes, bacteria escape the bladder and urethra, traveling up the ureters to one or both kidneys.

Pyelonephritis is a potentially serious kidney infection that can spread to the blood, causing severe illness. Fortunately, pyelonephritis is almost always curable with antibiotics.”

This makes quite a bit of sense. The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder.

The urologist actually had me look through the cystoscope myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.  Believe me, it felt surreal to be able to look inside my own body in real time.

Notice I’m exploring all the items on the list although not in the order MedicineNet.com offers them.

What’s next?  Let’s take a look at Glomerulonephritis. I went right back to my old friend The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glomerulonephritis/basics/definition/con-20024691 for some answers.  That’s where I found this definition of the disease:

“Glomerulonephritis (gloe-mer-u-low-nuh-FRY-tis) is inflammation of the tiny filters in your kidneys (glomeruli). Glomeruli remove excess fluid, electrolytes and waste from your bloodstream and pass them into your urine. Also called glomerular disease, glomerulonephritis can be acute — a sudden attack of inflammation — or chronic — coming on gradually.”

So this one does have more to do with the kidneys, but it’s still not CKD.  It can be acute, which CHRONIC kidney disease cannot.  Obviously, congenital diseases or malfunctions of the kidney are also not CKD since you are born with them, rather than having a slow deterioration of your kidney function.

For the life of me (cute, huh?), I cannot understand why a nephrologist would tell a CKD patient that flank – or kidney – pain cannot be associated with CKD when this may be one of the symptoms.  I’m going to have to suggest to the reader that asked for this blog that she challenge her nephrologist… again.

Want to hear about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? Of course, you do (she decided unilaterally). I was delighted to have new blog readers inform me that they’ve ordered multiple copies of the book for friends and family since these same new readers are also newly diagnosed CKD patients.  Hurray!  Some people are taking my advice.

Until next week,

Keep living your life.

Sleepus Interruptus

I just started – and trashed – three different versions of what I thought today’s blog would be about because I didn’t understand the research.  That’s the trouble with not being a doctor, and why I always remind you to speak with your nephrologist before you take anyone’s advice about your Chronic Kidney Disease, even mine.

I finally decided to write about my first choice.  This is yet another indication that our hunches are right.  My hunch after a night of waking up just about every hour was to write about CKD and interrupted sleep.  I should have listened to myself and saved all that time.

DaVita.com at http://www.davita.com/kidney-disease/overview/living-with-ckd/sleep-issues-and-chronic-kidney-disease/e/4896 tells us there are several reasons CKD patients have sleep problems:

• restless leg syndrome
• sleep apnea
• inadequate dialysis clearance
• emotions
• changes in sleep patterns
• caffeine

We share most of these reasons with those who do not have CKD except for those dealing with dialysis.  This includes the inadequate dialysis clearance.  It also includes restless leg syndrome which is usually associated with hemodialysis session. Since I only write about early stage, I won’t be discussing these causes.

Let’s talk about sleep apnea.  I wrote a blog about on August 12, 2012 that refers to this.  The most important information from that blog is:

“I found a study at http://www.medscape.com/viewarticle/538872which clearly links

sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

‘We think there may be a causative factor here; that sleep apnea may be causing direct

 glomerular injury,’ Dr. John J. Sim (Kaiser Permanente, Los Angeles, CA) told renalwire .

‘We already know that sleep apnea causes hypertension and that hypertension causes

kidney disease.’ If some degree of causality can be shown, it’s possible that treating sleep

 apnea may slow the progression of kidney disease, the authors speculate.”

This particular study was conducted in 2005.

Obstructive sleep apnea (OSA) was also the subject of January 13, 2014’s blog.  That’s where the following information is from:

“Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it

does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National

Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of

the problems of CKD.  It can also result in glomerular hyperfiltration.”

This is from a 2010 study.

Okay, so I have sleep apnea, had a sleep study and started wearing a Mandibular Advancement Device (MAD) at night to correct the problem, yet I still experience interrupted sleep.

Hmmmm, what is this ‘changes in sleep patterns’? Oh, of course.  Because I have CKD, I become more tired and even drowsy during the day.  Maybe I’ll sit on the couch in the family room to read for a bit; maybe I’ll even lay down there; and maybe – just maybe – I’ll fall asleep during the day.  Nothing wrong with naps, but if they’re long naps they could interfere with your sleep pattern.

So can going to bed earlier.  I tried that on really tired days and ended up waking up repeatedly.  I do go right back to sleep, but it just didn’t seem restful. Keep in mind that as you age, your sleep cycles are lighter and shorter.  So I may think I’m getting all the sleep I need, but the waking up interrupts the cycling of the different stages of sleep and then I start the cycles all over again.

WebMD at http://www.webmd.com/sleep-disorders/guide/sleep-101 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. As you get older, you

sleep more lightly and get less deep sleep. Aging is also associated with shorter time spans

of sleep, although studies show the amount of sleep needed doesn’t appear to diminish

   with age.”

Uh-oh, the deep stages of NREM (non-rapid eye movement) sleep are stages 3 and 4 which I may be missing by constantly waking up.  These are also the stages during which the body restores itself.

Emotions?  I can see that.  I dwell on the family’s medical problems, or someone I know and love who is out of work, or even my sweet Bella’s brush with cancer and I can get myself truly worked up.  So I don’t.  I mean I don’t think about these things at bedtime.  If I can’t seem to get them out of my head, I write a list of things to think about tomorrow.  As simplistic as it sounds, it works for me.  This is one piece of advice you don’t need to check with your nephrologist.

Wait a minute!  Who included my beloved caffeine on this list?????? This is where I get emotional.  Those two cups of caffeine a day are the only item on my renal diet that help me not feel deprived.  Okay, maybe we do need to be a bit rational about this (Don’t you just hate to be a grown up sometimes?).

This is what The National Sleep Foundation at http://sleepfoundation.org/sleep-topics/caffeine-and-sleep has to offer us about caffeine and sleep:

“Caffeine enters the bloodstream through the stomach and small intestine and can

have a stimulating effect as soon as 15 minutes after it is consumed. Once in the body,

caffeine will persist for several hours: it takes about 6 hours for one half of the caffeine

to be eliminated.”

Six hours for only half to be eliminated?  You mean, twelve hours for all of it to be eliminated?  I have got to stop drinking caffeine after noon. Okay, I can learn to live with that.  Heck, it’s better than no coffee at all.

Hopefully these suggestions will take care of my interrupted sleep problems.  Now what about yours?  Remember to speak with your nephrologist if you want to explore any of my suggestions.  As far as the emotions causing sleep problems, if my trick doesn’t work for you and you feel you need professional help with your emotions, please get it.

Here’s my last suggestion: buy a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before Moderate Stage Chronic Kidney Disease: The Book of Blogs is published. Then you’ll have the set of two.

Until next week,

Keep living your life!

Never NSAIDS

Never what?  One of the first rules we learn as Chronic Kidney Disease patients is never to take a NSAID, a non-steroidal anti-inflammatory drug.  Raise your hand if you remember why.  Hello fellow with the beard in the back of the room; what do you say?

Correct!  They further damage the kidneys.  Can you tell us how?  No?  Don’t feel bad.  Most people can’t, even those suffering from CKD.

What was that?  Oh, you want over the counter (non-prescription) names of some NSAIDS?  Sure.  Here’s a list courtesy of Nsaids-list at http://www.nsaids-list.com/:

• Aspirin (Aspirin is a brand name; the chemical is called acetylsalicylic acid)
• Celecoxib (Celebrex)
• Dexdetoprofen (Keral)
• Diclofenac (Voltaren, Cataflam, Voltaren-XR)
• Diflunisal (Dolobid)
• Etodolac (Lodine, Lodine XL)
• Etoricoxib (Algix)
• Fenoprofen (Fenopron, Nalfron)
• Firocoxib (Equioxx, Previcox)
• Flurbiprofen (Urbifen, Ansaid, Flurwood, Froben)
• Ibuprofen (Advil, Brufen, Motrin, Nurofen, Medipren, Nuprin)
• Indomethacin (Indocin, Indocin SR, Indocin IV)
• Ketoprofen (Actron, Orudis, Oruvail, Ketoflam)
• Ketorolac (Toradol, Sprix, Toradol IV/IM, Toradol IM)
• Licofelone (under development)
• Lornoxicam (Xefo)
• Loxoprofen (Loxonin, Loxomac, Oxeno)
• Lumiracoxib (Prexige)
• Meclofenamic acid (Meclomen)
• Mefenamic acid (Ponstel)
• Meloxicam (Movalis, Melox, Recoxa, Mobic)
• Nabumetone (Relafen)
• Naproxen (Aleve, Anaprox, Midol Extended Relief, Naprosyn, Naprelan)
• Nimesulide (Sulide, Nimalox, Mesulid)
• Oxaporozin (Daypro, Dayrun, Duraprox)
• Parecoxib (Dynastat)
• Piroxicam (Feldene)
• Rofecoxib (Vioxx, Ceoxx, Ceeoxx)
• Salsalate (Mono-Gesic, Salflex, Disalcid, Salsitab)
• Sulindac (Clinoril)
• Tenoxicam (Mobiflex)
• Tolfenamic acid (Clotam Rapid, Tufnil)
• Valdecoxib (Bextra)

Yes, young lady in the third row. This is a bit more detailed a list than you’d expected? Okay, let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for a simple explanation of NSAID.  Please turn to page 134.  Those of you with digital copies of the book, search the phrase.  Everyone have it?

NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease,    sometimes irreversibly.

So now we’re back to the original question.  How do NSAIDS further damage our kidneys?

But first I want to tell you just how important it is not to take them by sharing an anecdote with you. The first year after my CKD diagnose, my nephrologist spent a great deal of his time trying to convince me that I had caused by own CKD by taking NSAIDS very, very often.  He might have been right with another patient, but I was never one to rely on medications.

I would rather have used natural means to relieve myself of pain.  I did have arthritis and usually walked off the pain.  As for headaches, I would do the darkened room, rub the temples, mute the electronics and – my magic – ask one of my daughters to kiss my forehead routine. (Class!  No snickering.  It worked for me.)

Yet, overuse of NSAIDS was so common a cause of CKD that this was the only cause my nephrologist could see.  A while after this, studies showed that aging kidneys will lose their filtering power at the rate of ½% per year.  He switched to this cause, which I could more readily accept.

Yes, yes, I know we were going to discuss how NSAIDS further damage the kidneys today.

By the way, as early as 1984, the National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483278/?page=2 published a journal article from the Canadian Medical Association Journal entitled Adverse effects of NSAIDs on renal function.

Why no, I’m not procrastinating at all.  Here’s the answer to today’s question.

I found this explanation at a site that’s new to me (http://www.empowher.com/wellness/content/what-nsaids-do-your-kidneys):

All NSAIDs work by blocking the action of cyclooxygenase (COX). This enzyme performs a key step in the synthesis of prostaglandins [ me here with a definition of this word from the freedictionary.com at  http://medical-dictionary.thefreedictionary.com/Prostaglandins – a group of potent hormonelike substances that produce a wide range of body responses such as changing capillary permeability, smooth muscle tone, clumping of platelets, and endocrine and exocrine functions. They are involved in the pain process of inflammation.], which produce many effects in the body. Two of the effects are pain and inflammation for injured tissue. Other effects include protection of the stomach and homeostasis (regulation) of kidney function. The COX enzyme comes in two forms, COX-1 and COX-2. For a while, it was thought that COX-2 produces the pain and inflammation prostaglandins, while COX-1 produces the protective and regulatory prostaglandins.

The underlining is mine. That’s right, NSAIDS interfere with the regulation of the kidney function.  How?  Another good question from the middle of the room.

According to the National Kidney Foundation at http://www.kidney.org/atoz/content/painMeds_Analgesics.cfm,

“…because they reduce the blood flow to the kidney.”

So now we need to know why blood flow to the kidneys is important for CKD patients.

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 from 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.

Reduce the blood flow and you’re exacerbating the problem you already have… and all you need to do is avoid NSAIDS to avoid this problem. You’re right, class, that’s not exactly true, but it will help you preserve more of your kidney function.

Any questions for me?  For each other?

Well then, thank you for being such a willing and involved group of students.

While we all know this isn’t really a classroom and I’m not a doctor, this should answer a great many of the questions I’ve received via email or comments.

I’m also looking for first source research on both chia seeds and Goji Berries for a reader.  It seems there’s quite a bit of conflicting information about the safety of these two for CKD patients.  Please send along what you have, but first source only (not opinion, but fact).

It’s been my pleasure, folks.

Until next week,

Keep living your life!

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

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

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

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

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

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

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

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

  The American Kidney Fund

     http://www.kidneyfund.org/

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

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

National Kidney Disease Education Program

www.nkdep.nih.gov

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

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

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

National Kidney Foundation

www.kidney.org

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

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

• A to Z Health Guide
• About Chronic Kidney Disease
• Ask the Doctor
• How Your Kidneys Work
• Three Simple Tests to Check for Kidney Disease
• Recently Diagnosed
• KEEP Healthy – Free Kidney Health checks
• Kidney Quiz
• Rate Your Risk Quiz

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov 

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

This is their mission statement:

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

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

And let’s not forget

 Renal Support Network

www.rsnhope.org

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

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

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

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

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

• Home
• What is Kidney Disease
• Treatment
• Lifestyle
• Resources
• Health Care Professionals
• Glossary
• Change Language
• Site Map

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

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

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

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

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

Until next week,

Keep living your life!

Just Breathe

I was in Culver City, California, at a Landmark two day class this past weekend, so this blog was written before I left.  During these weekends, there’s very little free time which means I would have had to spend all Monday morning writing the blog… with a laptop that’s died at least three times already.

Rather than take that chance, I wrote this late Thursday night, since I flew to California on Friday and wouldn’t return until Wednesday. There were relatives to see there and sight-seeing, too.  Sony has a studio with sound stages there (first called Columbia Studio) and, as a recently officially retired actor, I found that too enticing to pass up. There’s a lot more to the studio’s story, but it doesn’t belong in a blog about CKD – unfortunately for me.

Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart above is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t means the other effects should be ignored.

In order to combat these problems, to say nothing of the rare risk of death due to not breathing, I wear something called a mandibular advancement device (MAD).  I know it sounds like my writing, but I did not make up that acronym.  Honest! The picture is very similar to the one I wear nightly. (I am not promoting that particular brand; it was just the best picture I could find.)

I didn’t want a Continuous Positive Airway Pressure machine  or CPAP, as it is commonly called, because I don’t like the idea of being tethered to anything – the same reason I am doing everything in my power NOT to get to the point when I need dialysis.

I didn’t want surgery because of the drugs involved.  I’m down to 48% kidney function, so I’d rather keep anything I haven’t checked previously out of my body. Last time I had surgery, before the operation, I asked for and was given a list of the drugs to be used.  I checked each with my nephrologist, but then – without advance warning – different drugs were used during surgery.

There’s a little more than meets the eye to keeping your oral (mouth) airways open at night. I love that play on words.  Back to serious:  the picture below shows how the MAD forces your airway open by advancing your lower jaw or mandibular.  A really nice by product is that you don’t snore anymore, either.

A dentist who is a sleep apnea specialist needs to monitor your progress.  When I first started, I was having so many episodes of sleep apnea (which means you stop breathing) that it was dangerous.  And here I’d thought I was just a noisy sleeper.

This specialty dentist advanced the metal bars holding the top and bottom of the device together so that my lower jaw was moved further and further forward while I slept and my airway opened more and more. I also used the same rubber bands people who wear braces use. I use them to keep my mouth pretty much closed.

While I am out of the danger range, I am still having those episodes  of apnea so I keep driving from my home to Tempe (between an hour and an hour and a half each way depending on the traffic) to have the device checked and adjusted every few months. This specialty dentist, the only one in the Valley of the Sun, then loans me a machine to measure the extent of my sleep apnea and the effectiveness of my MAD.

But that’s not all.  Since the mandibular is forced forward – good to open the airways, not so good for the muscles in the jaw – I also wear a retainer about half an hour after I remove, polish, and rinse the MAD.  This retainer stays in my mouth for about 15 minutes, but I need to physically push the mandibular back in place so that my lower teeth can meet the retainer on my upper teeth.  Result: I can’t talk. (I think Bear really likes this part of the treatment for my Obstructive Sleep Apnea.) Then this has to be brushed and dried, too.

In addition, I use a little machine that looks just like a jewelry cleaning machine in which I place a denture cleaning tablet once a week because there usually is some kind of buildup on the MAD.

This is quite a bit of work (adding to my daily routine of exercise, wearing hand braces at night, putting drops in my poor little macular degeneration suffering eyes… can I get a little sympathy here?), but well worth it.  I am not only saving my life, I’m saving my kidneys… and my heart… and my liver, according to the latest medical discoveries.

The down side?  Well, if I open my mouth while I’m wearing the MAD, I drool. I can hear Bear clapping now: more  silence from me. I could also risk stretching my jaw muscles if I don’t use the morning retainer.  Not using the retainer could result in a small, but permanent, shifting of my teeth as well.  And there is pain when I first take out the MAD.  Maybe I should write discomfort or minimal pain instead.

If you snore, get checked for sleep apnea.  Many people just don’t know they have it and, YES, it could be life threatening.

Did you see today’s (meaning Monday) Wall Street Journal.  In ‘Encore,’ Laura Landro wrote about SlowItDown and me.  I haven’t read it yet, but will be sure to post a link to it on WhatHowEarlyCKD and SlowItDown’s Facebook pages and Twitter accounts.  If you haven’t liked either of the Facebook pages, why not take a look at each of them and do it now?

Again, please be leery of Campusbookrentals.com and Chegg.com which are both attempting to rent What Is It And How Did I Get It? Early Stage Chronic  Kidney Disease for short periods at prices that are higher (for one of them, double) than that of the book.   Make use of the KindleMatchBook deep discount instead.

I’d discovered a place marker as well as the book cover on Amazon’s French site so I wrote them an email requesting they remove the place marker.  They removed both.  I think I’d better brush up on my French.

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.

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:

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? 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.

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 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.

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?

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

Keep living your life!

Testing…One…Two…Three…

On your mark, get set, test!  Or not.  It all depends upon which news articles you’ve been reading lately.  You’d think it was a no brainer to automatically test for Chronic Kidney Disease when 60% of the U.S. population is at risk and more than 28,000 of those that do have the disease don’t know they have it. That’s what you’d think, but not necessarily what your doctors think.

Then there’s the matter of so what?  That’s what I call reporting test results, but not acting upon them.  According to The Clinical Journal of the American Society of Nephrology (CJASN) at http://cjasn.asnjournals.org/content/early/2013/10/31/CJN.02490213.short?rss=1,

“Automated eGFR laboratory reporting improved documentation of CKD diagnoses but had no effect on nephrology consultation. These findings suggest that to advance CKD care, further strategies are needed to ensure appropriate follow-up evaluation to confirm and effectively evaluate CKD.”

That was more than a year ago.  So much has happened since then.

Yet, MedlinePlus, A service of the U.S. National Library of Medicine,  National Institutes of Health at  http://www.nlm.nih.gov/medlineplus/news/fullstory_141748.html posted an article from the American College of Physicians (ACP) which firmly suggests NOT routinely testing symptom free patients who have no risk factors while, at the same time, suggesting different methods for treating different symptoms  at different stages.  For the only time I can remember, I ended up sitting in my office chair staring at my computer screen scratching my head in confusion after reading an article on this site.  How can you treat what you don’t know you have since you haven’t been tested for it? To make matters worse, most of the early stage of CKD ARE symptom free. In this October, 2013, report, I found the following statement:

“There is no evidence that evaluated the benefits of screening for stage 1-3 chronic kidney disease,” ACP president Dr. Molly Cooke, said in a news release issued by the group. “The potential harms of all the screening tests — false positives, disease labeling, and unnecessary treatment and associated adverse effects — outweigh the benefits.”

Wait a minute here, folks.  I was diagnosed at stage 3 and have spent the last five years battling to stay in stage 3.  Don’t you think I’d rather be battling to stay in stage 1?  Or even stage 2?  You’ve got it backwards, Dr. Cooke.  I’d rather deal with the labeling, the chance of a false positive, etc. and have caught this disease earlier so it never got to stage 3. I like living more than I do being label free, ma’am.

Now for the other side of the coin.  That same month, the American Society of Nephrologists (ASN) – which, come to think of it, is the first group whose articles I started reading when I considered writing a weekly blog – came out in support of routine testing calling CKD “a silent killer.” This is more to my liking.  They talked about the chance to slow down, or perhaps even stop,  the  progression of the illness once you know you have it  and the fact that the procedure is not only lifesaving, but low  cost. (I’ve already spoken with some readers about this and they thought the cost might have been prohibitive.) You can read the article for yourself at http://newswise.com/articles/asn-emphasizes-need-for-early-detection-of-kidney-disease-a-silent-killer-in-the-u-s.

The National Kidney Foundation spokesman, Dr. Leslie Spry, had some interesting things to say about CKD in his Sept. 2013 blog in the Huffington Post:

“We, as a society, need to take kidney disease — which kills more Americans than breast cancer and prostate cancer combined — seriously, or the human and financial costs may become unbearable.”

He was referring to both the approximately $60 billion dollars the government spends on treating CKD annually and the need for those over 60 to be routinely tested.  The address for this particular blog of his is http://www.huffingtonpost.com/leslie-spry-md-facp/kidney-disease_b_3860079.html

According to Dr. Spry, too many people think of CKD as just something that happens as you grow older.  I know I didn’t.  Actually, I hadn’t yet realized I was growing older.  It was happening, but I wasn’t paying any attention.  It was the CKD – something I’d never heard of until I was diagnosed – that drove that fact home to me.

The whole purpose of the book, the blog, the Facebook page, and the tweets for both What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and SlowItDown is to inform people about testing for CKD, and then becoming educated about the disease.  Read the book, look at the Facebook pages and grab some of those daily tweets.  You don’t need to be shocked out of your socks at age 60 with the news that you have some disease you never heard of that may threaten your life like someone very close to me was. (Uh, so close we live in the same skin.)

Talking about the book, Amazon.com has come up with a deal I really like as a way of getting the word about CKD out to those who need it even more quickly. When you order a print copy of the book from Amazon, you can also buy the digital edition for $2.99. You get two for not much more than the price of one.  And don’t forget that you can share your Kindle books.  Amazon has been a pleasure to deal with from day one.

Oh, look at the date!  Tomorrow evening – from 5:30 to 8:30 – SlowItDown will be participating in the Health Fair in the Salt River Pima – Maricopa Indian Community.  It is open to the public, so feel free to meet us there.

For those of you who have texted, called, and messaged about Bear’s surgery, thank you again and again.  While he still cannot bear weight on the foot – even with his glow green in dark non-weight bearing cast – he is getting so good with the knee scooter that one of our almost sons-in-law was able to take him over to Rockler’s (the wood working shop where Bear works part time) and then to dine at Claim Jumper’s on Saturday.  While the excursion wiped out his energy for the next couple of days, Bear was a happy man.  Thank you, Sean.  Lara and Alex, your coming over so often has kept Dad’s spirits up  more than you know.

Until next week,

Keep living your life!

Stop It Before It Starts

First things first: thank you to Bear and every other veteran – living or not – for the sacrifices you made for the rest of us.  I wasn’t quite sure I believed in the military until I watched the attacks on 9/11… while my children were in the city.  Then I knew.  That day, soldiers and police officers became the most respected people in my world. It’s been close to a dozen years, but I still find myself weeping when I think of it.  If this is post traumatic stress for me, what is it like for our returning soldiers?

There is no way to slide into a blog from that so I won’t. There was a question on What Is It And How Did I Get It? Early Stage Chronic Kidney Disease‘s Facebook page ( https://www.facebook.com/WhatHowearlyCKD) about the inoculations that are suggested for those who have Chronic Kidney Disease.

Before we even get to the different kinds of inoculations, why do we need any in the first place?  According to http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837:

“Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.”

I have been on bed rest for several days, ever since I showed up at my primary care physician’s office for my Hepatitis-B vaccine and was told I’d have to come back for that at a later date.  I either had pneumonia or bronchitis. I didn’t know.  I thought I’d just been pushing my physical limits and needed to take some time off. Why mention that here?  Consider it proof that our immune systems become weaker with CKD.

I clearly remember (because it was only a few years ago), becoming sick for only a day at a time.   Then I noticed that maybe once a year I’d end up with the flu which had me down for about ten days.  This year, it’s been ten days with the flu, ten days with sinusitis, and now whatever this is.  You know I’ll be running to Dr. Zhao’s office for the inoculations as soon as my lungs are clear!

Now that I’ve convinced you they’re necessary, what are the inoculations?  There are three that DaVita suggests. The first, as mentioned, is Hepatitis-B. Let’s go back a little bit and define the disease. “Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver. ” That’s what the Mayo Clinic has to say about it.  You can read more at:  http://www.mayoclinic.com/health/medical/IM02250.

A Hepatitis-B infection may lead to kidney failure. What’s worse is that some adults never exhibit the symptoms of this disease.  Your kidneys are already compromised, as is your immune system. To the best of my knowledge, the drugs to treat Hepatitis-B may also adversely affect the kidneys.

Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection,  kidney function can be further reduced. The liver also filters toxins and drugs from the blood.

The liver performs quite a few of the metabolic functions necessary to keep you alive, much less healthy, certain of which affect the kidneys. Metabolic means the “chemical processes occurring within a living cell or organism that are necessary for the maintenance of life,”  according to www.thefreedictionary.com. If your kidneys are already compromised and then your liver is, what happens to your blood pressure and blood sugars without any kind of regulation?  I know I’m already having problems with both and don’t need any more. This much I knew.

As I researched, I discovered that the liver also converts blood ammonia – which is toxic –  into urea. Remember the kidneys turn urea into urine and that the amount of urea directly affects our kidney function.  What I didn’t know is that Hepatitis-B is one of the infections that can inflame  the glomeruli.  These are the parts of the kidneys that do the filtering.

I’m sure you’ve all heard of cirrhosis of the liver.  Guess what.  It can lead to kidney failure.  Get the vaccine!

I’ve spent most of the blog on the Hepatitis-B because it’s relatively new and I, for one, didn’t know much about it.  I’ve already written several blogs about the flu vaccine, so I’ll just add this tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc.”

• Cardiovascular disease is the leading cause of death among patients with CKD
•  Infectious diseases are the Infectious diseases are the second most common cause of death among cause of death among patients with CKD

That statement speaks for itself.

Ah, now the third vaccination: Pneumococcal.  Sounds terrible, but it’s really just the pneumonia inoculation. MedicineNet at http://www.medicinenet.com/pneumococcal_vaccination/article.htm#who_should_consider_pneumococcal_vaccination  tells us this is,

” a method of preventing a specific type of lung infection (pneumonia) that is caused by pneumococcus bacterium. There are more than 80 different types of pneumococcus bacteria — 23 of them covered by the vaccine. The vaccine is injected into the body to stimulate the normal immune system to produce antibodies that are directed against pneumococcus bacteria.”

Naturally, the next question is why CKD patients? Dr. Joseph A. Vassalotti, Chief Medical Officer of the National Kidney Foundation and Dr. William Schaffner, President of the National Foundation for Infectious Diseases have explained it better than I ever could:

“One reason people with CKD are at greater risk for pneumococcal disease is because kidney disease can weaken the immune system and make the body more susceptible to infection.

2 Doctors and researchers have found that infections in people with CKD such as those caused by pneumococcal disease are worse and can be more serious than in people who don’t have CKD.

3 In some people, infection can cause death.”

You can read more about that at: http://www.kidney.org/atoz/content/Pneumococcal.cfm

It’s time for me to crawl back into bed.

Until next week,

Keep living your life!

The Less Than Sexy Sinuses

Happy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at http://www.nlm.nih.gov/medlineplus/sinusitis.html,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

Back to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

“Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.”

You can read more at: http://www.mayoclinic.com/health/acute-sinusitis/DS00170.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

Acute  – extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic  – medication used to treat infection.

Chronic  –  Long term, the opposite of acute.

Chronic Kidney Disease – damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at: http://www.essortment.com/prevent-sinus-infection-62926.html, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

This is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

None of This Matters

Household tips I have learned via prepping the house for the wedding:                                                                

1. Contact paper works well on bathroom windows for privacy.
2. Adhesive white board paper makes a good privacy screen on the shower door.
3. Trees and bushes cut back due to frost damage do grow back quickly.
4. Things break at the absolutely worst time: dishwasher, solar water heating panel, a/c.
5. None of this matters.

The most important one is #5.  We are preparing for one of the most special days for us – our wedding – and we’ll be married whether we discovered these things or not.

But I may not have been here for my wedding day if my Chronic Kidney Disease had not been discovered.  Once it was, I was given the tools to retard its progression and seemingly reverse it at times.

An even earlier discovery of my ckd would probably have been better. Okay, so I was seeing a Physician’s Assistant who wasn’t all that astute.  The readings were right there in my blood tests almost a year before I changed to a primary care doctor who actually cared.  I really liked the P.A. who had been taking care of me, but learned that liking a person doesn’t necessarily mean she is a good medical practitioner.

There are so many ifs here: If I had known earlier, could I have made sure my eGFR (estimated Glomerular Filtration Rate) didn’t dip as low as it was when I was finally diagnosed? If I had been seeing a doctor rather than a P.A. would she have caught the ckd earlier?  If the blood tests had been read carefully, would I have had the opportunity to get to work on preventing rapid progression in the decline of my kidneys?

I will never know the answers to those questions, so – as #5 says – none of this matters … for me.  For you?  That’s another story.

Have you ever heard of KEEP?  That’s the Kidney Early Evaluation Program.  Notice the word ‘Early’ in the title. With ckd, the earlier you can detect the disease, the better. According to the National Kidney Foundation:

                            The goals of KEEP are to:

• Raise awareness about kidney disease especially among “high risk” individuals
• Provide free testing for people at increased risk for kidney disease
• Encourage people “at risk” to visit a clinician and follow the treatment plan recommended
• Provide educational information so that “at risk” individuals can prevent or delay kidney damage
• Provide  clinician referrals for follow-up care, if needed
• Provide ongoing information and support

You can read more about the program at: http://www.kidney.org/news/keep/KEEPabout.cfm

The KEEP Program is for all people, but the ‘high risk’ ones are the ones that may need to take immediate action.  What is ‘high risk’ you ask?

According to The National Kidney Center at: http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/  these are the high risk people:

“High risk groups for chronic kidney disease (CKD) include those with diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are also at increased risk.”

That definition covers quite a bit of ground.  For example, I have hypertension (high blood pressure) and am a Senior (Thank you for the capital letter, National Kidney Center!).  I don’t know if there’s any history of kidney disease in my family since the cousins my age don’t know of any, but our parents would never discuss their health with us.

Alright, so we need early detection.  Now, where can you find that?  On the home page of The National Kidney Foundation, there is an orange bar running across the page.  It has different pages on it. Hit the one that reads “Events.” Once you get to that page, scroll down and you’ll see the words, “Find a KEEP Screening Near You.”  Hit it. Voila!  You’ve found your local KEEP Screening.

The logical question here is, “What if there isn’t one near me?”  You don’t have to travel across state lines to find out if you have CKD.  Speak with your pcp (primary care doctor) and ask him or her to run a blood test and a urine test. While the results may not be crystal clear to a doctor who is not a nephrologist (kidney and hypertension specialist), high or low readings will be marked.  They will let your pcp know there may be a kidney function problem.

The National Kidney Disease Education Program at The U.S. Department of Health and Human Services at http://www.nkdep.nih.gov/resources/kidney-disease-mean-for-me.shtml#results provides the following information and a really nifty diagram of reduced function kidneys for you:

1. A blood test checks your GFR, which tells how well your kidneys are filtering. GFR stands for glomerular filtration rate.

2. A urine test checks for albumin. Albumin is a protein that can pass into the urine when the kidneys are damaged. See picture below.

If necessary, meaning if your kidney function is compromised, your pcp will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

Creatinine –

Creatinine is a breakdown product of creatine, which is an important part of muscle

Urine:

Creatinine clearance

The creatinine clearance test compares the level of creatinine in urine with the creatinine level in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle.

Thank you to MedLine Plus, part of the U.S. National Library of Medicine,  National Institutes of Health at http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm for the above information about the blood and urine tests.

Well if this blog isn’t enough to get you to check your kidney function, I just don’t know what is.

Before I leave, European sales of the book are surpassing those of U.S. sales.  I don’t know if that means we have more access to specialists and information here or that Europeans are reading more. Do let me know if there is a practice that needs a book donated to it or needs books to use as prizes or give-aways at patient education sessions.

I’m forgetting the world outside of wedding prep and CKD!  Guten Pesach to those who celebrate Passover, which started last night, and a Happy Easter to those who will be celebrating that on Sunday.

Until next week,

Keep living your life!

Frustrated and Wondering

You’ve seen it all over the book’s Facebook page and on Twitter.  Yesterday was my birthday, my 66^th birthday to be exact.  “I feel good.  I knew that I would,” as James Brown sings when someone calls me.  But what does my, uh, advanced age mean to my kidneys?

According to my nephrologist, I would lose 1/2 % of my kidney function each year since I was older.  Interesting… and wrong.  I’ve gained between 9 and 21 points on my GFR in the last five years.  It does vary depending on numerous factors: diet, sleep, exercise, stress, illness.

I had my blood drawn two weeks ago and the results told me that my GFR was 52, down from the 64 it had been only three months before. My primary care doctor told me not to worry about this lower number since I had clearly been incubating the flu at the time of the draw.

Here’s something you haven’t heard from me in a while (she wrote tongue in cheek): that got me to thinking.  What do illness – other than chronic kidney disease – and age have to do with your Glomerular Filtration Rate, a widely accepted indication of just how well your kidneys are functioning?

I found the following chart on The National Kidney Foundation’s website at http://www.kidney.org/professionals/kls/pdf/12-10-4004_KBB_FAQs_AboutGFR-1.pdf

      Average Measured GFR by Age in People Without CKD 

AGE  (Years)                   Average Measured GFR (mL/min/1.73 m2)

20-29                                                      116

30-39                                                      107

40-40                                                        99

50-59                                                        93

60-69                                                        85

70+                                                           75

Notice this is for people without CKD.   Now I’m not a mathematician, as we all know, but if those without our disease lose almost ten points of their GFR each decade they age, why am I not surprised that we who do have Chronic Kidney Disease are expected to be lose the same number of points?

By the way, that does take into account the 1/2% a year I would be losing on my GFR – according to my nephrologist – due to age.  But it’s just not happening.

This is a good place to mention that a reader was infuriated that her nephrologist never told her to double her rate to see where she was on the charts.  She previously had a kidney removed due to cancer and was living with one kidney.

Until she was given that information, she thought she should be on par with those living with two kidneys and was aghast as how low her GFR was.  I can see where her ire would rise (as well as her blood pressure from all that unnecessary worry).

I have been researching for hours and the only answers I’ve found to the question of how the flu affected my GFR were on forums or pay-an-expert-for-a-medical-answer sites.

Sorry, folks, I just don’t trust them.  I will be seeing my nephrologist this week and will make it a point to ask him.

When I had the flu, my nephrologist told me to go right ahead and take the over the counter medications my primary physician had suggested and in the dosages recommended on the labels.  He did caution that I not take anything with the letter  ‘d’ in the name since that might raise my blood pressure.

Here’s what DaVita at http://www1.davita.com/3617 has to say about that:

When the flu season hits, the use of treatments for cold and flu soars. These medications often include compounds that can intensify

hypertension and salt retention. Should you require a product to treat cold and/or flu symptoms, it is strongly recommended that you

take them as prescribed by your doctor and carefully read the package instructions.

Notice we still don’t know if the flu affects the GFR.  Although, logically, if hypertension (high blood pressure) affects your kidneys and these medications may raise your blood pressure… perhaps that means they lower your GFR?

These are the kinds of questions that sent me running to interview different nephrologists, rather than trying to research my answers on the internet, when I was writing the book.

Attempting to research these questions brought me to this chart on the site of The National Kidney Disease Education Program – which is a part of The U.S. Department Of Health And Human Services – at http://www.nkdep.nih.gov/learn/testing/understand-gfr.shtml.

I have included it here due to its clarity.  Seeing numbers written doesn’t always make it obvious just what the guidelines are, especially for those of us who think we’re not that good at math.

I certainly do not mean to beg the issue, but I’m getting nowhere looking for definitive answers as to how my age and any other illness such as the flu affect CKD.

We can all see how age and illness affect us as far as appearance, physical use of our body, and even shrinkage (Proof: I am ½ inch shorter due to the compression of the discs between my vertebrae), as well as the coughing, sneezing, and body aches of the flu.

Apparently, you have to be a doctor, or have the vocabulary of one, to be able to understand the connection of these conditions to your GFR.

On another note, The Southwest Nephrology Conference is on March 1 & 2 at Wild Horse Pass Hotel and Resort in Chandler.  That is simply too close to ignore.  I am thinking about going to meet all the specialists I’ve corresponded with from different parts of the country in person.

Could I interest any of you in joining me?  You can read more information about the conference at http://swnc.org/

I keep forgetting to mention the book!  Since I no longer do book signings or book talks, the only way to get the information out there is for you to buy books for your friends and family.

Hey!  I’m donating as fast as I can! (Wait until my accountant hears about that.)

Until next week,

Keep living your life!

Back To Basics

My daughter Abby and I just spent the weekend at Landmark Education’s Access to Communication Course.  If I weren’t already a Landmark graduate, I’d say I couldn’t believe what I learned.  Since I am a Landmark graduate, I’ll share with you my delight at learning just how simple and loving communication can be.

Of course, I’d urge you graduates reading this blog to register for this course and those of you who aren’t yet graduates to explore the Landmark Forum.  You might get an idea of how forceful this work is when I tell you that my upcoming marriage is a result of it.

As a matter of fact, there’s an introduction this Wednesday night at the Scottsdale center from 7 – 11.  The address is 16100 North Greenway-Hayden Loop, Suite 108, and the phone number is 602-222-1110. You can always contact me and we can go together.

I chose communication about CKD as the topic for this week’s blog because I have been doing just that… and being startled over and over again at the number of people I’ve spoken with that know nothing about Chronic Kidney Disease.  So, this week, we go back to basics.

Anyone know what the kidneys are and what they do?  Will the gentleman with his hand raised in the back of the room answer the question, please?  Oh, it’s my future son-in-law, Sean, and he’s quoting me!

On page 1 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, Gail Rae wrote, “Later, I learned that the kidneys were two reddish brown organs which lay on the muscles of the back on either side of your spine above hipbone level and below the diaphragm… Some have compared their size to that of a clenched fist or a large computer mouse, and the right one lies lower than the left since the liver is on that side.” [You can order digital copies of the book at Amazon.com and B&N.com.  Print copies are available at Amazon.com and myckdexperience@gmail.com.]

I couldn’t have said it better myself.  [ Ha Ha. Get it?  I DID say it.] Now about their function… Ah, lady on the left side of the room. Estelle, my dear East Coast buddy, I didn’t know you were here.

According to The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/#kidneys, “Every day, a person’s kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.” Nice job!

What else do they do?  Nima?  Yes, you may answer questions even though you’re my daughter.  Well then:

• Control your body’s chemical balance
• Help control your blood pressure
• Help keep your bones healthy
• Help you make red blood cells

You’ve learned well.  What was your source?  The American Kidney Fund at http://www.kidneyfund.org/kidney-health/kidney-basics/your-kidneys.html.

That’s a good one, as are all the others mentioned here.  They each contain far more information than we’ve included in today’s blog and can make you a sort of neophyte kidney expert.  Well, maybe someone who knows about his/her early stage chronic kidney disease or that of someone you know and/or love might be a more realistic title.

More?  Okay.  How many people have chronic kidney disease?  Look there.  Lara, my step-daughter, who is in very good health (thank the powers that be) is here.  Ummm, I did tell you that number but it’s changed a bit since then.  It’s 26 million in the USA alone and raising.  Those are the diagnosed people.  There are millions of other who have not yet realized they have CKD according to The National Kidney Foundation at     http://www.kidney.org/kidneydisease/aboutckd.cfm#facts

How do you know if you have it?  Excellent question, Kelly. As another healthy person, my step-daughter has asked an important question. Since there are rarely symptoms, it’s all about blood and urine tests.  A simply stated E-how article at http://www.ehow.com/how_2051919_test-kidney-disease.html explains without overwhelming.  Basically, your doctor is looking for protein in your urine and at the following values in your blood test: GFR (glomerular filtration rate) and bun (blood urea nitrogen).  I don’t advocate eHow for medical information, but this one is not that bad.

I will, Bear, right now.  The wonderful man I’ll be marrying in April asked me to make certain I write about the renal diet.  He follows it with me so we don’t have to cook two different meals when we do cook and he lost 60 pounds in the first several months of doing so.  I could hate him for that, except that I already love him.

The renal diet is only one part of the treatment. [There’s also exercise, adequate sleep and lack of stress.] I thought the one at Buzzle (http://www.buzzle.com/articles/diet-for-chronic-kidney-disease-ckd.html) was a good example until I realized there was no potassium restriction on this diet.  I follow that of the Northern Arizona Council of Renal Dietitians. What this tells us is that you need to pay attention to the specific renal diet the nephrologist (kidney and high blood pressure expert) has given you or your loved one, friend, and/or co-worker.

Basically, sodium, phosphorous, protein, potassium and fluids are restricted. Sometimes, I feel like my fluids are exaggerated rather than restricted – like when I’m writing – and have to remind myself to drink so I can meet my 64 ounces/per day ‘limit.’

My neighbor and friend, Amy, just asked me to backtrack a bit and discuss the causes of CKD.  That would be helpful, wouldn’t it?

eMedicine at http://www.emedicinehealth.com/chronic_kidney_disease/page3_em.htmers this.  Two thirds of ckd is caused by high blood pressure or diabetes, but they neglected to mention that sometimes ckd is simply a result of growing older – as in my case.

You know the people I mentioned are not in my office as I write this blog, so here’s a public thank you to each of them for the loan of their names.  I kind of think they would have offered those answers or asked these questions if they were here with me right now.

Check out those websites.  They offer quite a bit of information.

Until next week,

Keep living your life!

Blue Monday – But Only When It Comes To Sugar

If you read the Facebook page, you already know I received good news when I visited my primary care doctor, the ever educating Dr. H. Zhao of Deer Valley Family Practice here in Phoenix. The visit was for her to more carefully read the results of the blood tests than I am capable of since I’m not a doctor. I take these tests quarterly because I was prescribed Pravastatin which might have an effect on the liver.

By the way, pravastatin is used with hyperlipidemia (high cholesterol). Luckily for me, I have had no side effects from this drug.  As with every other patient taking the drug, it wasn’t even prescribed until after we had tried dietary changes, exercise and weight reduction.  My body seems to have a mind of its own (love the juxtaposition of body and mind), and paid no attention to any of my efforts; hence, the drug regimen.

That’s a pretty long involved explanation of why I was in Dr. Zhao’s office at all.  The good news is that with all my complaining – and there’s been plenty – about the exercise and renal diet, my eGFR (estimated glomerular filtration rate) went up to 60 from 50.  That is borderline between stage 1 or normal kidney function and stage 2 or mild chronic kidney disease. This, after three years of being at stage 3 or moderate ckd. I was so floored I was speechless, not at all usual for me.

Of course, along with the good came the bad.  Funny how it always works that way.  It seems my A1c, a blood test which measures how your body handles sugar over a three month period, had risen again.  This has been on a very slow incline for quite a while.  Now it’s 6.3.  At 6.4, I officially have type 2 diabetes.

What is that specifically?  Type 2 is the type that can be controlled by – surprise! – life style changes, while type 1 is insulin dependent or the kind that requires a daily injection.  But wait a minute!  I already limit the sweets (sugar) and make it a point to exercise, so how could this be?

When I asked Dr. Zhao to help me with this, she was able to print out material about diabetic exchanges for meals. I also made an appointment with Crystal Barrera, my nutritionist at Arizona Kidney Disease and Hypertension Center, so she could help me combine the renal, hyperlipidemia, diabetic, and hypertension diets I need to follow. But that’s later on this month. Meanwhile, let’s deal with the material I was given.

Lo and behold, sweets are only one aspect of the diet. I hadn’t realized carbohydrates had so much to do with diabetes. It seems they turn into sugar. Now that I know this, it makes perfect sense.  I just never made the connection. I learned that too many carbohydrates at the same time raise the blood sugar.

Well, I got myself another eye opener as I read.  I always thought of carbohydrates as starches – bread, cereal, starchy vegetables and the beans that I can’t eat anyway since they’re not on the renal diet. But I learned they are also milk and yoghurt (I have never been so thankful to be lactose intolerant), and fruit.

I wasn’t terribly upset since I’m already limited to six units of starches, three of vegetables (starchy or not), three of fruit and one of dairy.  Uh-oh, doesn’t that mean I was already being careful about my food intake? It was a struggle for this miller’s grand-daughter to keep within the bread limits.  What else was I going to have to struggle with?

It turns out the limits for each of the categories of food in the diabetic diet is more liberal than those on the renal diet.  For example, Sunday morning I make gluten free, organic blueberry pancakes. They’re simple, quick and tasty. Bear uses butter and syrup (got some terrific huckleberry syrup for him when I was in Portland, Oregon, for the Landmark Education Advanced Course in June, but I like them plain.) According to the diabetes exchange, one of these counts as a starch (1 4-inch pancake about ¼” thick) and ½ of a fruit exchange (one-half cup of canned or fresh fruit). Wait, there’s more.  I used 1 teaspoon of extra virgin olive oil which is a fat exchange. Hmmmm, this is simply not that different from counting units for the renal diet.

Ah, so the diabetic exchange meal is not that much of a problem for me, it’s combining the restrictions of the four diets I need to follow. I’ve already decided to follow the lowest allowable amount of anything.  For instance, the diabetic exchange allows 2,300 mg. of sodium per day while the renal diet only allows 2,000 mg.  I stay well under 2,000 mg.

I’m beginning to see that I can figure out how to do this myself, but I am so glad to have my nutritionist to verify my conclusions.  You know, the government pays for your nutritionist consultation once a year if you have chronic kidney disease.  It’s not a bad idea to make an appointment.  You may surprise yourself by not being aware of new dietary findings about the renal diet or discovering you’ve accidentally fallen into some bad dietary habit.

Also, as expected, exercise is also important if you (or I) have diabetes. It helps keep your blood sugar levels under control.  The recommendation is 30 minutes five times a week.  I’m already striving for 30 minutes a day every day and don’t want to let that go.  I’m hoping to make that a habit.

I am SUCH a writer!  One of my first thoughts after I was told about the A1c level was, “Maybe I should write a book about type 2 diabetes.”  As far as the ckd book, I was just informed I have blog readers in China who are ordering the book.  Let’s see if we can disseminate the information all over the world.  Here’s to no more terrified newly diagnosed patients!

Until next week,

Keep living your life!

Regenerative Medicine Or Last Year’s Science Fiction Becomes The Future’s Science

It’s Monday again and I found a slew of interesting comments just waiting for me when I came to the blog.  The material, as I just wrote, was interesting but I can’t comment on them in the blog because each and every one of them contained advertisements.  I am uncomfortable endorsing any product I haven’t either tried myself or researched. I’m wondering if any of the people who sent these informative comments that contained advertisements would be interested in offering the information without the advertisements. I, on my part, would be more than willing to consider running guest blogs after I have the time to review the information.

July 4th, Independence Day, is Wednesday. The picture below, one I took at Niagara Falls, somehow epitomizes independence to me – something about how freely and differently each drop of water makes the fall.  There’s another kind of independence down the pike for us – independence from the dialysis that is the only alternative now for ESRD sufferers.

Okay, now get ready to be amazed and learn a new word: “Podocytes are found only in the kidney and are an integral structural component of its blood-filtering system. They stand shoulder-to-shoulder in a part of the organ called the glomerulus {as CKD patients, that word should be more than familiar} and wrap their long ‘feet’ {pod is Greek for foot, just as ped is Latin for root} around the semi-permeable capillaries through which blood flows. Narrow slits between the feet allow small molecules, such as water and salts, to pass while blocking large proteins {sound familiar?}…’The implication is that podocytes may utilize recognized pathways of regeneration to renew themselves throughout life,’ said Artandi (associate professor of medicine Steven Artandi, MD, PhD. and senior author of the study). People suffering from chronic kidney disease {that’s us} may simply have worn out or outpaced their podocytes’ capacity for renewal, he believes.

Now that the researchers know podocytes have the ability {to}regenerate in response to common cellular signals, their next step is to learn whether this regeneration occurs in healthy animals and people. ‘If we can harness this regeneration,’ Artandi said, ‘we may one day be able to treat people with chronic kidney disease.'”

According to the article, there is a possibility in the future of coaxing our own bodies to produce more of these podocytes to replace those that have died. This is another new way of treating chronic kidney disease.  Add this to cloning, artificial kidneys, external mechanical kidneys and the future holds just so many more options than three different types of dialysis.  I, for one, am so encouraged I can feel my heart leaping in my chest (well, maybe not, but I am super encouraged.)

The entire article can be found at:  http://www.medindia.net/news/Hope-for-Treating-Chronic-Kidney-Disease-Via-Regeneration-of-Specialized-Cells-94388-1.htm#ixzz1zUXL2jok

In the same vein {Get it? Medical term? Vein?}, are you aware that kidneys can be 3D printed?  I had to read that sentence twice myself.  Then I started wondering WHY even bother making a 3D print of a kidney.  Read on Wake Forest University’s Anthony Atala explains :

“For example, the talk {above the transcript at the address below} highlights our still-experimental work to engineer a human kidney. Being able to replace solid organs such as the heart, liver, kidney {note that – kidney} and pancreas is considered the ‘holy grail’ of tissue engineering. That’s why we’re pursuing multiple strategies in this area: cell therapies, tissue ‘inserts’ to augment an organ’s function, and ‘printing’ replacement organs.

At TED {TED stands for Technology, Entertainment Design}, we demonstrated 3-D printing technology, already used in a variety of industries — from auto parts to concrete structures. Our goal, or course, is to apply the technology to organs. The project is based on earlier research in which we engineered miniature kidneys {hurray!} using biomaterials and cells. In animals, these structures were shown to be functional, in that they were able to filter blood and produce dilute urine.

This printer, while still experimental, is being explored for organs such as the kidney {ahem} and structured tissue such as the ear. The ultimate goal is to use patient data, such as from a CT scan, to create a computer model of the organ we want to print. This model would be used to guide the printer as it layer-by-layer prints a replacement organ made up of cells and the biomaterials to hold the cells together. ”

The entire article is at: http://www.huffingtonpost.com/2011/12/20/printing-organs_n_1160307.html

The FDA is on board, too, with their Innovation Pathway program which was launched in 2010 to reduce the time and cost of bringing safe and effective breakthrough technologies to patients.These three aimed at kidney patients were approved earlier this year:

•  An implantable Renal Assist Device being developed by the University of California, San Francisco.
• A Wearable Artificial Kidney in development by Blood Purification Technologies Inc. of Beverly Hills, Calif. {discussed in a blog last month}
• A Hemoaccess Valve System that has been designed by Greenville, S.C.-based CreatiVasc Medical.

You can read more at: http://www.fiercehealthit.com/story/fda-clears-path-new-kidney-disease-tech/2012-04-10?utm_medium=rss&utm_source=rss#ixzz1zUj6DUAk

 

 

The future for chronic kidney disease patients is almost here and it is encouraging.  For now, there’s always my book.

Until next week,

Keep living your life!

Will This Really Be Possible?

Are you so busy in this period between Thanksgiving and Chanukah/Christmas/Kwaanza/ whatever other celebration I don’t know about that you haven’t had the chance to keep up with the chronic kidney disease world?  Relax: that’s what this blog is for.  Besides, this may very well be a gift for you – albeit not this year. Honestly, I’d settle for this gift anytime before I hit the need for dialysis.

If you’ve read the book or the earliest blogs, you know I have an irrational revulsion toward dialysis.  It’s an emotional reaction and one that rears its ugly head every time I think about the process.  Maybe I don’t have to have that reaction any more.  Maybe dialysis won’t be necessary any more.  I know I sound delusional, but let’s hold off on that opinion until after you read this article from MedIndia. It’s a bit long, but well worth the read.

Hope for Treating Chronic Kidney Disease Via Regeneration of Specialized Cells

                 by Kathy Jones on  December 06, 2011 at 7:26 PM                         Genetics & Stem Cells News        

Pedocytes are specialized type of epithelial cells in the kidney, which get damaged in more than 90 percent of all chronic kidney disease cases.

 

Now researchers at the Stanford University School of Medicine have uncovered an unexpected pathway that reveals for the first time how these cells may regenerate and renew themselves during normal kidney function.

This finding is an important step toward one day therapeutically coaxing the cells to divide, which could be used to treat people with chronic kidney disease.

“Researchers have studied these cells for years, but the prevailing view has been that they don’t renew themselves,” said associate professor of medicine Steven Artandi, MD, PhD. “Now we’ve found that podocytes can enter and leave the cell cycle in response to certain common signaling pathways.”

Artandi is the senior author of the study, which will be published online Dec. 4 in Nature Medicine. The first author of the work is former postdoctoral scholar Marina Shkreli, PhD, who is now at the Laboratory of Biology and Pathology of Genomes at the University of Nice in France.

Podocytes are found only in the kidney and are an integral structural component of its blood-filtering system. They stand shoulder-to-shoulder in a part of the organ called the glomerulus and wrap their long “feet” around the semi-permeable capillaries through which blood flows. Narrow slits between the feet allow small molecules, such as water and salts, to pass while blocking large proteins.

This filtering process is the first step to forming urine, and it is critically important — even one missing cell can leave a gap that would allow unwanted molecules through the barrier. (Imagine wrapping your hands around a length of leaky garden hose so that the water seeps out between your fingers. Lift up one finger and you’re liable to get sprayed in the face.)

This may be why previous researchers searching for signs of self-renewal in podocytes were unsuccessful, because any such renewal or replacement would likely need to be carefully orchestrated to avoid compromising the filtration system. As a result, scientists have been forced to conclude that the podocytes rarely, if ever, divided.

“It used to be thought that you were born with podocytes, and you died with the same podocytes — you don’t make any more during your lifetime,” said Artandi. The only exception was certain rare types of kidney disease in which the podocytes abandon their blood-filtration duties en masse to de-differentiate into less-specialized, dividing cells that little resemble their predecessors. As a result, the glomerulus collapses and the patients’ kidneys begin to fail. One such disease is HIV-associated nephropathy, or HIVAN.

The problem was, such a scenario doesn’t make a lot of evolutionary sense — particularly when other epithelial cells routinely regenerate themselves. “Podocytes are vitally important, and are also under enormous physical stress,” said Artandi. “It’s hard to understand why we would have such a vulnerable blood-filtration system.”

To understand more about kidney biology, Artandi and Shkreli investigated the role of a protein component of the telomerase complex called TERT. Although telomerase is best known as an enzyme involved in cell aging, recent research in Artandi’s lab and others have shown that TERT also plays a role in many types of cellular regeneration.

The researchers found that temporarily increasing the expression of TERT in adult, otherwise healthy laboratory mice caused the formerly stolid podocytes to abruptly de-differentiate and begin dividing. As a result, the glomerulus collapsed in a way that resembles what happens in humans with HIVAN. Conversely, ceasing the overexpression allowed the cells to stop dividing, re-specialize and resume their normal functions.

When Artandi and Shkreli looked closely at the glomeruli in humans with HIVAN, they found that TERT expression was increased. Equally important, the Wnt signaling pathway, which is important in embryonic development and in the self-renewal of stem cells, was also activated. (Previous research in the Artandi lab has linked telomerase activity to the Wnt pathway.)  Blocking Wnt signaling in a mouse model of HIVAN also stopped the podocytes from dividing and improved their function.

“The implication is that podocytes may utilize recognized pathways of regeneration to renew themselves throughout life,” said Artandi. People suffering from chronic kidney disease may simply have worn out or outpaced their podocytes’ capacity for renewal, he believes.

Now that the researchers know podocytes have the ability regenerate in response to common cellular signals, their next step is to learn whether this regeneration occurs in healthy animals and people. “If we can harness this regeneration,” Artandi said, “we may one day be able to treat people with chronic kidney disease.”

In addition to Artandi and Shkreli, other Stanford researchers involved in the study include medical resident Kavita Sarin, MD, PhD; graduate students Matthew Pech and Peggie Cheung; medical student Woody Chang; lab manager Stephanie Brockman; former research assistant Eunice Lee; research associate Frank Kuhnert, PhD; and associate professor of medicine Calvin Kuo, MD, PhD.

The research was funded by the National Institutes of Health, the Stanford School of Medicine, the Stanford Center on Longevity and the Glenn Laboratories for the Biology of Aging at Stanford. Information about Stanford’s Department of Medicine, which also supported the work, is available at http://medicine.stanford.edu.

The URL for this article is  http://www.medindia.net/news/Hope-for-Treating-Chronic-Kidney-Disease-Via-Regeneration-of-Specialized-Cells-94388-1.htm

On the book front, Nima Beckie – a columnist for Skorch and my daughter, the writer – recommended the book as a Christmas gift.  That was an unexpected gift from daughter to mother!  Don’t forget the book signing at Next Coffee Company, 19420 N 59 Ave., Glendale, Az. 85308; I really enjoy meeting my readers in person.  Looking ahead to the new year, there’s a twitter chat coming up in January, another radio show in March (which is National Kidney Month) and possibly another book signing along the way. I hadn’t realized that getting my book into the hands of every newly diagnosed Chronic Kidney Disease patient would be so much fun!

Until next week,

Keep living your life!

Dr. Rich Synder DO – Guest Blog

Nothing like being post blood draw for feeling relieved and ready to work.  By the way, that picture frame on the right side of the table contains a list of my numbers.  Make sure you know your own so you can deal intelligently with your body and your doctors.

I keep my eye out for any Chronic Kidney Disease publications after the release date of my own book.  One day, to my surprise since it had been a futile attempt until then, I discovered What You Must Know About Kidney Disease. I figured it was going to be about another kind of kidney disease just like all the others I’d looked at since last May, but it wasn’t. I bought it, read it, and is my wont, contacted the author to both congratulate him on an informative book and ask him whatever questions I had.  It turned out Dr. Synder reads the blog and to quote him, “Concerning your blog, I love your blog!”  Where’s that feather that keeps knocking me over?

You’ll find his blog on my blogroll to the right below the calendar after the categories.  I should be on his blogroll, too, by now or will be soon.  This is one busy person.

Below are the answers to some of the questions I asked him:

Let me a clarify: probiotics and alkalinized water are for everyone.

My approach: I am looking at the kidney as part of and working with your total body. It is a different approach than the way I was taught in fellowship. If the heart and the blood vessels and the cells are not working well, your kidneys are not going to work well.I am using a more holistic approach.

Probiotics in general: While decreasing total body inflammation, they help to normalize the immune system as well as help bowel irregularity. The kidney based probiotic is still a probiotic; it just also helps to also clear the intestine of the uremic toxins that can build up in advanced CKD. They have the lactobacillus and bifidobacterium species present in other probiotics.

Concerning water: Do you know how many people I see with early stage CKD who have a benign urine and no proteinuria? Why do they have early CKD ? Maybe part of it is what we ingest and what we are exposed to every day. An article in The New England Journal of Medicine talked about water and low level lead exposure and how it can be a cause of CKD over the years. This encompasses the pesticides in the water, not to mention the cellular effect of an acidic Western diet. I did a show entitled “Are Colas Killing Your Kidneys?” in which I talked about the fact that twenty years of phosphoric acid are likely to have an effect on your kidneys.

Ongoing studies of how to treat glomerular disease and proteinuria: These look at protocols: what can I give – steroids or chemo or both? I am not going to say I have  not used them or medications when necessary. I would be a hypocrite if I did. But….why, why, why do my patients have kidney disease and what can one do about it? The prevention is what we do each and every day of our lives.

Here are some suggestions:
1) Alkaline/anti-inflammatory based diet: Some say,”Eat for your blood type.” But, what is the DASH diet for hypertension? It is not just a low salt diet. It is also full of anti-oxidants and anti-inflammatory.

2) Water: I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. Where are these buffers? In the bones and in the cells, as well as some extracellular buffers. You are helping lower the total body acidity and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?

3) Decreasing total body inflammation and raising anti-oxidant support:  Why is the heart the most common organ affected by kidney disease and dialysis? It’s due to inflammation and vascular calcification. If a person is diabetic and obese, they may also have a fatty liver. Altered liver hemodynamics are also going to play  a role in kidney function. I see the end aspect of this everyday in the hospital. I look at these things too.

4) Standard care for someone with diabetes and kidney disease: This is the use of an ACE inhibitor. This is right and I use it with anyone I can. What happens if the person is on the ACE inhibitor and is still spilling tons of protein? What happens if they can’t take the ACE inhibitor because of high potassium problems?  I look for other answers.

Your kidney doctors are not wrong  at all in what they are telling you. I  just look at things from an additional perspective. Do I bat 1,000? No way. Have I had better results than before? Absolutely, yes. Do I need to learn a lot more? Heck, yes….I keep looking at things from a different perspective and asking why.

Many thanks to Dr. Synder for guest blogging to answer my questions today. Listen in at 8pm EST (that’s 6pm in Az.) to hear him interview me on Improve Your Kidney Health tonight: www.voiceamerica/show/1843/improve-your-kidney-health.

Until next week,

Keep living your life!

Why is high blood pressure important again?

Thank you, everyone, for all your support concerning the book.  It’s becoming clear that the way to get it into the hands of every newly diagnosed Chronic Kidney Disease patient is to look for medical or corporate backing.  Too bad I’m not in a financial position to just give it away. So, now the question is: how do I acquire that backing?  It’s getting lonely trying to figure that one out myself. Any ideas?

Just as I found myself thinking it was time for a reminder of the importance of controlling high blood pressure since it plays such an intricate role in CKD, Science Daily ran this article:

Kidney Damage and High Blood Pressure: Faulty Filtration Allows

Detrimental Enzymes to Wreak Havoc On Fluid Balance, Research

 Suggests

ScienceDaily (Sep. 23, 2011)

The kidney performs several vital functions. It filters blood, removes waste products from the body, balances the body’s fluids, and releases hormones that regulate blood pressure. A number of diseases and conditions can damage the kidney’s filtration apparatus, such as diabetes and immune disorders. This damage leads to a condition called nephrotic syndrome, which is characterized by protein in the urine, high cholesterol and triglycerides, and swelling (edema). People with
nephrotic syndrome retain salt and water in their bodies and develop swelling and high blood pressure as a result.

Scientists have now begun to understand kidney damage on a cellular level and how the activity of certain molecules in damaged kidneys contributes to salt and water retention in nephrotic syndrome. Several new insights in this area of research will be presented at the 7th International Symposium on Aldosterone and the ENaC/Degenerin Family of Ion Channels, being held September 18-22 in Pacific Grove, Calif. The meeting is sponsored by the American Physiological Society.

Faulty Filtration

The kidneys are marvels of filtration, processing roughly 150 to 200 quarts of blood each day through tiny structures called nephrons. There are about 1 million nephrons per kidney, and each nephron consists of a filtering unit of blood vessels called a glomerulus, which is attached to a tubule. Filtered blood enters the tubule, where various substances are either added to or removed from the filtrate as necessary, and most of the filtered sodium and water is removed. The filtrate that exits the tubule is excreted as urine.

In nephrotic syndrome, a damaged filtration barrier allows substances that are not normally filtered to appear in the filtrate. One of these substances is the protein plasminogen, which is converted in kidney tubules to the protease plasmin. In their research, Thomas R. Kleyman, Professor of Medicine and of Cell biology and Physiology at the University of Pittsburgh School of Medicine and the Symposium’s co-organizer, and Ole Skøtt, Professor of Physiology and Pharmacology
and Dean at the University of Southern Denmark in Odense, independently found that plasmin plays a role in activating the epithelial sodium channel (ENaC) on cells in the nephron. ENaC is a protein embedded in cell membranes that facilitates the absorption of filtered sodium from tubules. When ENaC is becomes overactive, excessive absorption of filtered sodium may lead to sodium and water retention.

According to Dr. Kleyman, these findings provide an explanation of how damage to the glomeruli in the kidney’s nephrons leads to edema and high blood pressure. Dr. Kleyman explains: “When plasminogen is cleaved, it can act on several targets. One of those targets is ENaC. Another is the protein prostasin, which, once cleaved, will activate ENaC, as well.”

Dr. Kleyman noted the implications these findings have for treating edema and high blood pressure in patients suffering from nephrotic syndrome. “This is important because if plasmin activates ENaC, it suggests that targeting ENaC in the kidneys with ENaC inhibitors may be a treatment option.”

You can find the article at: http://www.sciencedaily.com/releases/2011/09/110922134615.htm  

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by American Physiological Society, via EurekAlert!, a service of AASS.

While CKD and Nephrotic Syndrome are not the same, the explanation of the inter-relationship between high blood pressure and kidney damage (which wasn’t bold type in the original article – I did that because it’s in the middle of the article) is very clear.

Looks like WordPress is having formatting problems for which I apologize even though I’m not in control of that.  Now put down that salt shaker and go back to checking food labels for sodium content.

Until next week,

Keep living your life!

National Kidney Month Continues

To continue the celebration of National Kidney Month, today we visit DaVita’s wonderfully informational site.  Again, I’ve tried to preserve the click throughs.  Just in case your computer didn’t receive today’s blog that way, their address is: www.DaVita.com.  Or, you can check out their discussion forum through the blogroll to the right of the blog. Notice: only the information pertinent to Early Stage Chronic Kidney Disease is included in today’s blog.

March is National Kidney Month

March is National Kidney Month…. DaVita has teamed with The Kidney TRUST, an organization that aims to benefit the estimated 31 million adults living in the United States who have chronic kidney disease (CKD), as well as the 550,000 Americans with end stage renal disease (ESRD) who need dialysis or a kidney transplant, to help raise awareness about kidney disease.

Chronic kidney disease develops when kidneys lose their ability to remove waste and maintain fluid and chemical balances in the body. The severity of chronic kidney disease depends on how well the kidneys filter wastes from the blood.  It can progress quickly or take many years to develop.

More than 31 million adults in the US – one in six – have chronic kidney disease and most of them are not even aware of it. Often there are no symptoms until kidney disease reaches the later stages, including kidney failure.

Risk factors for chronic kidney disease

High-risk populations include those with diabetes, high blood pressure, cardiovascular disease and family history of kidney disease. Eleven percent of the U.S. population has diabetes, the number one cause of kidney disease. One out of three Americans has high blood pressure, the second leading cause of kidney disease.

More than 32 percent of kidney failure patients are African American. Other high-risk groups include Hispanics, Pacific Islanders, Native Americans and seniors 65 and older.

Who should be screened for chronic kidney disease?

Anyone 18 years old or older with diabetes, high blood pressure, cardiovascular disease or a family history of kidney disease should be screened for kidney disease. If you live in an area that is offering a free screening, plan to attend. If not, visit your doctor and ask that you be screened for chronic kidney disease.

What is involved in a kidney screening?

Because there are often no symptoms of kidney disease, laboratory tests are critical. When you get a screening, a trained technician will draw blood that will be tested for creatinine, a waste product. If kidney function is abnormal, creatinine levels will increase in the blood, due to decreased excretion of creatinine in the urine. Your glomerular filtration rate (GFR) will then be calculated, which factors in age, gender, creatinine and ethnicity. The GFR indicates the person’s stage of chronic kidney disease which provides an evaluation of kidney function.

Treatment for chronic kidney disease

In many cases, kidney failure can be prevented or delayed through early detection and proper treatment of underlying diseases, such as diabetes and high blood pressure to slow additional damage to the kidneys. Also helpful are an eating plan with the right amounts of sodium, fluid and protein.  Additionally, one should exercise and avoiding dehydration. Treating diabetes and high blood pressure will slow additional damage to kidneys.

Related articles on DaVita.com

• How to delay the onset of dialysis
• Understanding chronic kidney disease (CKD)
• What is kidney failure or renal failure?

More features

• DaVita Phosphorus Challenge: are you game? Sign up now
• Kidney disease symptoms, diagnosis and treatment education articles

It’s Friday.  The weather is beautiful out here and you know, if you have Chronic Kidney Disease, one way to deal with it (while complying with your nephrologist’s instructions after you’ve thoroughly questioned him or her about them) is to:

Keep living your life.

Kidney Month Redux

Still in keeping with the spirit of National Kidney Month, I’m posting the National Kidney Disease Education Program’s (NKDEP) suggestions. NKDEP is an initiative of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), U.S. Department of Health & Human Services (DHHS).

I’ve left them clickable in the hopes that will make it easier for you to take their advice. If they don’t work on your computer for whatever your computer’s secret reasons, here’s the link to the article so you can click through from there: http://www.nkdep.nih.gov/kidneymonth/

10 things you can do to protect your kidneys and help family and friends protect theirs.

	If you have diabetes, high blood pressure, or a family history of kidney failure, get your blood and urine checked for kidney disease.
	At your next family gathering, talk to loved ones with diabetes and high blood pressure about getting tested for kidney disease.
	Learn how to keep your kidneys healthy.
	Educate your faith-based community about the kidney connection.
	Use spices, herbs and sodium-free seasonings in place of salt.
	For those recently diagnosed with kidney disease, find out about the basics of kidney disease and what it means for you.
	Watch videos to hear about the different treatment options for kidney failure.
	Health care professionals: Learn more about two key markers for chronic kidney disease: urine albumin and estimated glomerular filtration rate.
	Become an organ donor.
	“Like” the NKDEP’s Make the Kidney Connection Facebook page.I’m keeping this month’s posts short and to the point so that you can spend the time you usually spend reading my posts clicking through to other articles on kidney health or researching the information that’s been made available to you via these posts.  March is the month of renewal – about our current kidney information anyway. Enjoy the researching and clicking through.  Until Friday, Keep living your life!

Nutritionist Updates

I got to see the nutritionist yesterday.  I was unaware that you are provided (by the government, no less) one free visit with your renal nutritionist per year.  One of the secretaries at the nephrologist’s office let that slip and I jumped on it making an appointment immediately.  Now why didn’t the nephrologist mention this or the nutritionist when I saw her the first time?

Remember I wrote about being too overwhelmed when you’re first diagnosed to catch everything you’ve being told and that’s why you need to either take notes or bring someone with you?  I think that’s what happened to me here.  In a very early visit to the nephrologist, he probably mentioned this and I didn’t catch it or the nutritionist actually did tell me this during our first visit and I was too busy trying to figure out what she meant by renal diet and food units to hear her fully. Let’s hear it for note taking and/or bringing a friend along.

Crystal, the nutritionist par excellence, gave me some ideas.  As you’ve probably figured out from reading the blog, I have a seemingly permanent battle on my hands: my weight.  When I could thoroughly exercise pushing myself for at least half an hour a day, it didn’t seem so bad.  Once I developed the difficult arthritis problem in my hips, I was stymied.  I continued to exercise anyway, but sometimes could only do it for ten minutes or not at all at a certain time.  I was starting to feel hopeless.  Crystal applied some common sense to my problem: exercise in spurts.  This way if I can only do ten minutes at a time, no big deal: I would keep working on my half hour during the day – even if it meant only minutes at a time – until I achieved my goal of half an hour. This is not the way I like to exercise, but it’s the best I can do with the hip. It’s only been one day, but I certainly don’t feel hopeless about the exercise part of losing weight anymore.

Crystal also told me that not eating until I was hungry is NOT a good idea.  I’ve been having a bit of a problem with blood sugar.  She suspects it may be because I don’t eat until I’m hungry and that causes sugar spikes.  Just as with the exercise, this is common sense, but nothing I thought of in connection with the weight and sugar problem.  Her suggestion was that I eat five or six little meals a day so that my blood sugar stayed constant.  She also mentioned this would help with weight loss because my body would no longer think I was starving and hold on to those extra calories.  Thinking about it, I remember my son-law – Aaron – told me this years ago.  I had simply forgotten and needed to be reminded.

There are days when I just don’t make the minimum 1100-1200 calories I’m allotted.  I was patting myself on the back for being so careful about caloric intake, but Crystal pointed out that going below this number of caloried may mean I’m getting enough nutrition in that particular day.  I do have a good appetite (sometimes too good!) but, especially when I’m writing, forget to eat because I’m just plain deliciously involved in what I’m doing.  I will have to make it a point to eat when I wake to avoid my body thinking I’m starving and holding on to calories, eat five or six small meals a day to ensure even sugar levels and make certain that I eat the minimum number of calories on my renal plan so that I am getting the nutrition I need each day.

The image in this blog – courtesy of National Institute of Diabetes and Digestive and Kidney Disease, National Institutes of Health – demonstrates how all exercising helps to keep your impaired kidneys keep functioning to afford you clean blood.  You can’t see  yourself exercising in the image, of course, but you do get to see how the “blood with wastes” enters glomerulus of your kidney.  The tubules in the nephrons filter the wastes in the blood into your urine and only the clean blood recirculates through your body.

We’re all familiar with the GFR – Glomerulus Filtration Rate.  The diagram shows how different parts of the glomerulus, the tubules in the nephrons, within your kidneys, filter your blood.  Never again will you have to sit there scratching your head when your nephrologist refers to your GFR.  You’ve seen how it works and what the parts of the kidney are.

The Estimated GFR

There’s something I need to tell you: the state of Arizona has decided that transplants (not just kidney transplants) are elective surgery.  There we have our first death panel.  The state health insurance for lower income families has been instructed to deny claims for transplants, even reverse those claims already approved.  This is very, very scarey. I urge you to contact Jan Brewer, Arizona’s state governor, to protest BEFORE this kind of insanity spreads to other states.

Arizona is setting a precedent, one it would behoove us to insist she reverse.  The following link will give you a bit more information: http://ktar.com/?sid=1341224&nid=6.  Brewer’s contact information is at http://azgovernor.gov/Contact.asp.  There’s an e-mail form, a telephone number, a fax number and a snail mail address on that page. As Chronic Kidney Disease – Early Stage patients, we are far away from transplants, but we will need them whether it’s months, years or decades from now.

That’s the other end of our disase.  Now back to the beginning. The symptoms of kidney disease don’t show up until you’ve lost most of your kidney function.  That’s when you’ll experience the fatigue that’s not always a result of anemia, the muscle cramps that usually – but not always – present themselves in your calves, nausea, vomiting, appetite loss, easy bruising, itching and the shortness of breath when you exert yourself.  If you’re like me, you started feeling them as soon as you read about them, but they weren’t really there.  It was a classic case of medical student syndrome. That’s when you are convinced you have the disease (or, in my case, the symptoms) as soon as you learn about it.  Actually, according to my nephrologist, I’m probably at least 20 years away from such symptoms.  So how do the doctors know I have CKD?

It’s all in the numbers, the numbers of your estimated GRF that is. But what is the GRF, and why is it estimated?  Isn’t medicine an exact science? It seems not.

GRF means the Glomerular Filtration Rate.  Big help, isn’t it? Filtration Rate sounds easy enough, but what are (is?) a Glomerular?  The dictionary tells us that filtrate is the part of a liquid that passed through a filter. So, glomerular filtration measures the filtrate from the glomerular.

According to The Gale Encyclopedia of Medicine, a glomerular is a small tuft of blood capillaries in the kidney responsible for filtering out waste products. So far, so good.  Now, how does this relate to CKD?

It is considered the best indication of measuring kidney function when used as part of a formula that includes age, gender, body size, race and serum creatinine level. Creatinine is a waste product of muscle activity. What actually happens is that our bodies use protein to build muscles and repair themselves. This used protein becomes an amino acid which enters the blood and ends up in the liver where it is once again changed.  This time it’s changed into urea which goes through the kidneys into the urine.

The harder the muscles work, the more creatinine that is produced and carried by the blood to the kidneys where it also enters the urine.  This in itself is not toxic, but measuring the urea and creatinine shows the level of the clearance of the harmful toxins the body does produce.  These harmful toxins do build up if not voided until a certain level is reached which can make us ill. Working kidneys filter this creatinine from your blood.  When the blood levels of creatinine rise, you know your kidneys are slowing down.  During my research, I discovered that a non-CKD patient’s blood is cleaned about 35 times a day. A CKD patient’s blood is cleaned progressively fewer times a day depending upon the stage of the patient’s disease.

In Kathryn Seidick’s Or You Can Let Him Go, she quotes her son’s doctor, “The word you will come to love or dread, Mr. and Mrs. Seidick, is creatinine.  This is a substance constantly secreted by muscles, and its presence in the blood shows better than anything how well the kidney is doing.  If the creatinine is low, 0.5 to 1.5, the kidney is doing well; if it is high, the kidney is in trouble.”  This book was published in 1984, but Dr. Gruskin’s words are still apt, although he was referring to a child’s creatinine levels. A mature man’s can be between 0.6 to 1.2, and a mature woman’s between 0.5 and 1.0. It can be even lower for children and, as you age, it lowers even more.  The more websites I visited, the more variable [albeit very slight] I noticed in acceptable ranges for non-CKD creatinine levels.

Once again, I urge you to contact Jan Brewer’s office before our kidneys give out on us.  Thanksgiving is Thursday.  One of the things we can be thankful for is that we don’t need transplants yet, but what about those lower income people in Arizona who do need an organ transplant?  Think about how to phrase your letter to Brewer as you eat your turkey and just keep loving your life – the way these people being denied their transplants love theirs.

The End of the Nephrologist’s Report

You’re right.  This was a long report.  It actually is only two pages, but in blogging, it needed to be chopped into sections or I would have lost most of you a long time ago.  I’m surprised at how much I get out of reading it each time I work with this report.  I thought I had it practically memorized by now, but I keep noticing new information.  Well, not new, I’ve read it before – but information I’m first paying attention to.  So let’s finish up this report.

The IMAGINING STUDIES section was followed by the nephrologist’s IMPRESSIONS, which started out with “Chronic Kidney Disease Stage 2, estimated glomerular filtration rate of 60-5 mL/min, likely secondary to presumed hypertensive nephrosclerosis.”  That means kidney damage due to HBP. (Even though the high blood pressure had been treated for the last 20 years?  I did ask and was told simply, “Yes.”).

Ironically, the next item in IMPRESSIONS was “Hypertension, well controlled on current medications.”  (I asked the same question  again and was told “yes” again.) Then there was mention of the cysts. Surprisingly, I also had iron deficiency without anemia.  I somehow never connected my fatigue with kidney disease, but I was learning. My history of dyslipidemia [high tryglycerides or cholesterol or both] and my nephrolithiasis [kidney stone] were mentioned, too.

Finally, the nephrologist’s RECOMMENDATIONS. These included starting ferrous sulfate [iron] 325 mg. p.o. [by mouth] at noon.  Why noon? It seems you’re meant to take this with a meal to minimize the chance of stomach upset. I suppose that made sense, but I was alternately teaching and acting at night, so noon was not a meal time for me.

The vitamin C I had been taking was eliminated since it has high oxalate [combines with calcium to form kidney stones] consistency which could cause further nephrolithiasis.

I had read of Omega 3 therapy being helpful in retarding the development of CKD and discussed this with my doctor. In this section of the nephrologist’s report, he agreed that I could safely take 1200 mg. one tablet p.o./b.i.d. [twice a day].

Here’s a tricky one: I was to continue drinking at least 64 ounces of fluid  [eight cups] a day but not more.  Yes, I did start keeping track.  I knew a cup of coffee was eight ounces, and I had two a day.  That left me with 48 ounces which I kept to water unless I had four ounces of soy milk with my morning cereal. But then I discovered that some things I’d always thought were solids are really liquids.  I’ll be writing about this in more depth in a later blog since it requires an extensive explanation.

The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function. Below that were my provider’s name and other information identifying the electronic file.

Although I had carefully looked up every term I didn’t know and had sat with this report for days while I did, I felt like I’d been run over by a truck – a big one.  That’s when I decided (yet again) I had to research everything I could about this disease.  I read, I Googled, I sat in the library right next to the reference librarian, and I made a pest of myself at my doctor’s office via phone calls and unscheduled visits – not the way to endear yourself to someone you need on your side.

In an unusual way, this paid off.  I discovered I couldn’t find what I wanted in one book, and it took too long to extract one bit of information from this source and another from that.  I didn’t see the purpose of every newly diagnosed CKD patient hoeing the same row.  I decided to take my doctor’s challenge: I would write that book I needed about early CKD.  That book is now in final edits and will be available in early 2011 (if I have my way).  Gee, shameless, blatent self promotion feels so good.

On that happy note,

Keep loving your life.

Where It All Started

My new primary care physician – a term I use interchangeably with family doctor or simply physician in this blog – was looking at the results of current blood and urine tests when she started asking me those questions I couldn’t answer. I’d always accepted that copies of my quarterly blood tests were in my file at the doctor’s office and I’d be informed if there was a liver problem since I was taking these tests to monitor how my medication was affecting my liver function in the first place.

Pretend you are looking at my test results. On top, above the results section, was all the information needed to identify these as my tests and the information that this was a fasting test, no eating or drinking after midnight the day before the blood and urine were collected.  Following are explanations of the different parts of these tests, including what is measured in each part.

The CBC, with Diff,/with Plt:

In plain English, this test measures the concentration of white blood cells (WBC), red blood cells (RBC), and platelets (PLAT) in the blood.  All are important since the white blood cells make up your immune system, the red ones carry oxygen to the other cells in your body – so the higher the number here the better – and wastes such as carbon dioxide from them, and the platelets deal with the blood’s clotting ability by repairing leaks in your blood vessels.

Something I found interesting: white blood cells are the largest, red ones smaller and platelets the smallest and that there are five billion red blood cells – the mid sized cells – in a single drop of your blood .  Your blood is 60% plasma, which is a fluid, and 40% blood cells.  Remember the kidneys should control the amount of fluid in your body, but with CKD doesn’t do this effectively.

Furthermore, red blood cells usually live 120 days, but not with CKD so they need to be replaced more often.  You may not yet have heard of EPO (erythropoietin). This is the substance that travels via the blood from the kidneys to the bone marrow to trigger the manufacture of red blood cells.  With CKD, less EPO is produced so the bone marrow makes fewer red blood cells.  That translates into anemia. 

“DIFF.” indicates that your doctor wants the lab to describe each type of white blood cell and list how many of each type of cell is present since each performs a different function. Lymphocytes, monocytes, basophils, eosinophils and neutrophils (segmented means mature) are different types of white blood cells. Absolute means that a formula has been used to count each type of white blood cell.

Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.  I didn’t know it then, but hemoglobin is important for CKD patients. Hematocrit reflects the percentage of blood volume that is made up of red blood cells (erythrocytes), something else that is important to CKD patients.

MCV, or Mean Corpuscular Volume, measures the average volume or size of individual red blood cells. MCH, or Mean Corpuscular Hemoglobin, measures the hemoglobin content of red blood cells. MCHC, or Mean Corpuscular Hemoglobin Concentration, measures the concentration of hemoglobin in the average red blood cell. MPV, or Mean Platelet Volume, describes the size of the platelets. RDW is the red cell distribution width, also important for CKD patients since it deals with different kinds of anemia.

My explanation of the tests is a bit simplistic, but for me on this blood test, none of the results (column 2) were out of range (column 3) according to the reference ranges (column 4). This was good news for me.

 Most labs set up their reports using this four column system.  Column 1 was the name of the test.  I’ve learned to watch hemoglobin and hematocrit. It’ll be a little vague now, (all right, so it’s a little boring, too) but both have to do with anemia which can be common in people with our disease.

Amylase, Lipase

I glossed over the next section, since all was all right in my amylase – lipase world. Naturally, I had no idea what they were and didn’t care since they weren’t causing a problem for me.  But then curiosity got the better of me, so I looked them up: amylase is an enzyme that breaks starch down into sugar. Were we looking for diabetes, another cause of Chronic Kidney Disease, here?

 Lipase is an enzyme necessary for the absorption and digestion of nutrients in the intestines. I wasn’t sure why that was being tested until I researched a bit more and discovered that, even though an elevated level of this indicates a pancreatic problem, a mild increase of lipase in the blood could be an indication of kidney disease. Both tests were within range.  More good news for me.

Lipid Panel

Then I hit the Lipid Panel. Uh-oh, all these years of taking medication to successfully control my cholesterol level and the triglyceride number was out of range. These quarterly blood tests were to monitor the cholesterol lowering medication’s affect on my liver. I’d never had such a result before.  The triglycerides are one of the “bad” cholesterols like LDL cholesterol and could affect the heart and blood vessels. I was a little confused as to what this had to do with CDK.

Cholesterol, as you probably already know, is a natural substance in the body which is actually helpful – unless you have too much.  Then it threatens your heart health. Triglycerides, another natural substance in the body, can also threaten your heart health, this time via your coronary arteries. To be blunt, triglycerides are fat.

 I recognized HDL cholesterol as the “good” cholesterol and LDL as the “bad,” but what was VLDL Cholesterol? I discovered it’s “very low density lipoprotein,” a transporter of cholesterol within the body just like HDL and LDL cholesterol. I didn’t bother with ratios and percentages thinking (hoping?) they were self explanatory.

 

Comprehensive Metabolic Panel

It got worse: while my glucose (sugar in the blood), urea nitrogen (BUN) – which could indicate some kind of kidney disorder – and creatinine (a higher result could mean the kidneys were not adequately filtering this from the blood) were within range, the estimated GFR or Glomerular Filtration Rate was certainly not above 60 as it should be. The GFR is considered the best method measuring kidney function and staging of kidney disease. 

It is also important since the dosage of any medication you may be taking may have to be adjusted for this level of kidney function. Many drugs exit via the kidneys.  That means if your kidney function is reduced, these drugs are going further than they need to and you may need to take less of them.

 The percentage of kidney function is measured by comparing the amount of waste produced in your urine to the amount of waste found in your blood stream. To be perfectly clear, this test showed that my kidneys were functioning at a Stage 2 Kidney Disease Level.  Panic time for me!

Sodium, potassium, chloride, phosphate, calcium, magnesium and carbon dioxide are all electrolytes that the kidneys help keep in balance… and, according to this blood test, were. Suffice it to say, the anion gap deals with the body’s acidity. At this point, I decided the rest of the Comprehensive Metabolic Panel was just too technical for me. But the not knowing was probably worse than the knowing, so I forced myself to investigate them.

Protein, Total looks for an indication of kidney (I was right to research this) or liver function. Albumin, produced in the liver, deals with a certain pressure between blood and tissue fluids. Globulin was being tested for any degenerative, inflammatory and infectious processes (like CKD?).

I was beginning to feel I was re-inventing the wheel, but knew I was still a little too fragile to understand what the doctor was explaining, even if I did take notes. Again, I ignored ratios, deciding I could always get to that on the next round of tests if they turned out to be important, in range or not.

Calcium is more than we were told it is as children.  Yes, it does relate to bone metabolism, but it also deals with muscle contraction to name only one of its several jobs. It helps with trauma, infection and stress, too.

Alkaline phosphatase, if elevated, indicates a liver, bone or intestinal problem, possibly cancer. Alt and Ast meant nothing to me but, again, were tests to indicate liver damage or dysfunction. Bilirubin, Total is the test to see just how much of it from damaged or old, dead red cells remained in the blood when the hemoglobin broke down.

There’s far more to explain about this blood test even before we get to the urine test, but it will have to wait.  The material, while simplified, is too technical to absorb too much at one reading, so: more next time.  Have a fun, healthy weekend!