The Third Kidney

Here I am back from the semiannual vacation with my husband, brother, and sister-in-law. It was sad to realize this was our last cruise, but some of our bodies just can’t handle that anymore. It looks like mine may be one of them since I’m in bed feeling not so great. How was I ever going to be able to write a blog for Monday, I wondered.

And then I remembered that I’d met someone with an idea so old that it’s new again and he’d promised a guest blog for this week.  And there it was, right in my mailbox. I’d met Raymond Keller, Jr. DO at the American Association of Kidney Patients I attended recently. He had an intriguing idea, one I thought should be shared with you.

Take it away, Raymond…

First and foremost, please do not consider any of the following as medical advice. Consult your doctor before making any changes to your medical treatment plan.

I’m not the first person to suggest the skin as a “Third Kidney,” but like many others I did independently conceive the idea. For the origin story you can read a recent interview done by the American Association of Kidney Patients. The premise of the Third Kidney is that skin, through the sweat glands, can excrete water, potassium, and urea in amounts that would be clinically useful to patients with chronic kidney disease especially those on dialysis. Before we get into the Third Kidney, let’s take a brief look into the history of dialysis itself.

Willem Johan Kolff is credited with being the inventor of dialysis. He pieced together things that could be found in a contemporary house to create the first dialyzer. The original dialysis membrane was a sausage casing. Crude, but effective. Belding Hibbard Scribner would come to create the “Scribner shunt” which allowed repeated use of the same vascular access. Once long term vascular access was obtained, long term hemodialysis became a reality.

Now let’s get down to the details about how sweating can help dialysis patients. While there are many potential compounds that can build in the body with renal failure, urea, water, and potassium are of particular importance. Let’s take a moment to explore the consequences of each and how sweat therapy can help.

Water is essential to life. So essential, we search for evidence of it on other planets to decide whether life could exist. To most dialysis patients water is a constant enemy. It is the reason they have to spend more than two hours on dialysis per day – to reach their dry weight. The evidence for keeping fluid off is part of the reason why people that do dialysis more than 3 days a week have better outcomes.

As anyone who lives between the Arctic and Antarctic Circle has likely experienced, sweating removes water from your body. Sweating is so interrelated with being human that almost every culture in human history has a tradition of inducing it. The Finns are perhaps the most well-known with their saunas. The Russians have banas, the Turks have hammams, and the Native Americans have sweat lodges. While everyone is different, it is not unreasonable to expect that a 45 minute sauna session could remove between 500-1000mL of fluid from the body. Higher losses are possible with training. To put that into context, a 4 hour dialysis session typically removes 2000mL and removing more than 400mL per hour can cause symptoms of hypotension. Sweating out fluid is a natural process, which is why it can reduce the ultrafiltration required.

In the table 1 below (adapted from https://www.homedialysis.org/life-at-home/articles/fluid-and-solute-removal-part-two) it is very obvious how likely it is for people to develop symptoms from removing fluid from the blood stream rather than the skin. This is especially important when we consider that the skin is where most excess fluid is stored, which is why dialysis patients get puffy.

Now on to potassium. Even though it is a vital nutrient, it has a dark side. Potassium chloride is one of the typically used compounds in lethal injections because it causes the heart to stop beating. As it builds up in the blood of a patient with renal failure it can have the same effect. Similar to fluid overload, keeping potassium levels at an appropriate level are a major reason daily dialysis patients do better than thrice weekly patients. Fortunately, potassium is excreted in sweat at 2-3 times the level it is found in the blood stream. During a regular sauna session the clinically relevant amount of potassium, in upwards of 4.6 grams, can be removed from the body.

And urea? Urea is a controversial molecule is the dialysis community, yet a relatively simple molecule that our bodies use to detoxify ammonia and remove nitrogenous waste from our bodies. We used to think that it freely diffused across cell membranes, like water. But seminal work by my mentor Jeff Sands, MD showed that there are molecular transporters for urea. In the dialysis community, urea rebound is proof that urea is not freely diffusible.

There has been much debate about the toxicity of urea. Regardless of whether urea is toxic, and at what levels it is, blood urea nitrogen is one way we monitor the adequacy of dialysis. Urea is excreted in sweat at about 2-3 times its presence in serum. Understanding how sweat affects the blood urea nitrogen levels will be important in coordinating the combination of sweat therapies with dialysis.

How does all of this relate to SlowItDownCKD? There is value to researching whether sweat based therapies like sauna can be used to reduce the dependence on dialysis. Given the above facts it is useful to ask the question of whether sweat based therapies can reduce the number of days per week or number of hours per day of dialysis. There is also the potential for sweat based therapies to push off dialysis for patients with CKD. Third Kidney currently has IRB (institutional review board, also known as an independent ethics committee) approval to do safety trials with Harvard Medical School professors. After a safety trial, the next step would be a study in patients that have chronic kidney disease.

When it comes to sweat based therapies for CKD I’ll leave you with a few thoughts:

  1. No rational person would say that sweating vis-a-vis exercise is a bad idea for CKD patients.
  2. If fluid balance was better achieved by sweating hours, or even days of dialysis, might be avoided.
  3. If potassium is lost in sweat it would allow people to liberalize their potassium intake, opening up a culinary panoply.

If you are interested in learning more about how sweat based therapies may be beneficial in patients with chronic kidney disease and the research that Third Kidney is doing, you can visit us at ThirdKidney.net.

Wow! Just wow. This is – as we used to say in college decades ago – mind blowing. It’s so simple, yet so complex. With many thanks for this new/old information, I’ll say good bye for now.

Until next week,

Keep living your life!

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Any Veterans Here?

Veterans Day was Saturday, although many schools and businesses chose to celebrate it on Friday. That confused me since I mistakenly thought all national holidays falling on the weekend in the U.S. were celebrated on the following Monday. Once that was straightened out for me, I wondered if we were the only country to honor those who fought for us.

According to The United States Department of Veterans Affairs at https://www.va.gov/opa/vetsday/vetday_faq.asp, we’re not:

Q. Is Veterans Day celebrated in other countries?

A. Yes, a number of countries honor their veterans each year on November 11, although the name and types of commemorations differ somewhat from Veterans Day celebrations in the United States. For example, Canada and Australia observe “Remembrance Day” on November 11, and Great Britain observes “Remembrance Day” on the Sunday nearest to November 11. There are similarities and differences between these countries’ Remembrance Day and America’s Veterans Day. Canada’s observance is actually quite similar to the U.S. celebration, in that the day is intended to honor all who served in Canada’s Armed Forces. However, unlike in the U.S., many Canadians wear red poppy flowers on November 11 in honor of their war dead. In Australia, Remembrance Day is very much like America’s Memorial Day, a day to honor that nation’s war dead.

In Great Britain, the day is commemorated by church services and parades of ex-service members in Whitehall, a wide ceremonial avenue leading from London’s Parliament Square to Trafalgar Square. Wreaths of poppies are left at the Cenotaph, a war memorial in Whitehall, which was built after the First World War. At the Cenotaph and elsewhere in the country, a two-minute silence is observed at 11 a.m., to honor those who lost their lives in wars.

There are 600,000 veterans with kidney disease in the U.S. Considering that kidney disease is a medically dischargeable disease (Can you imagine soldiers in the field trying to stick to the renal diet?), I began to wonder just how our veterans were being treated once they were no longer active military.

I went to the National Institute of Diabetes and Digestive and Kidney Diseases at http://bit.ly/2ABGeli for the following information:

The prevalence of chronic kidney disease (CKD) in the Veteran population is estimated to be 34% higher than in the general population, due to demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension. VA currently cares for over 600,000 Veterans with kidney disease in their 153 medical treatment facilities or 800 community based outreach clinics (CBOC’s) across the United States. Those Veterans who progress to kidney failure are treated either at home or in one of the 70 VA dialysis units, or if dialysis services are not directly available, may be treated in the community under VA contracted care. Currently over 15,000 Veterans receive care directly by VA or through the community under VA contracted care. Eligible Veterans may also elect to receive dialysis care in the community using Medicare or other personal health benefits programs. Renal transplantation is also offered through the VA as a regionalized service at 5 centers.

Wait a minute. Why did “demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension” lead to a whopping 34% of veterans having kidney disease?

I know when Bear spoke with me about his 25 year military career, he talked of people with different ethnic backgrounds from different parts of the country… some from different parts of the world.

I remembered writing this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“…Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American ethnic groups…have a 15 to 17% higher occurrence of CKD.”

And I was off and running. Last Veterans Day’s Huffington Post was able to help out here.

“According to the U.S. Department of Defense, as of 2012 there were over 22,000 American Indians and Alaska Natives on active duty, and the 2010 Census identified over 150,000 American Indian and Alaska Native veterans.”

You can read the entire article at https://www.huffingtonpost.com/national-museum-of-the-american-indian/american-indians-serve-in-the-us-military_b_7417854.html.

And Hispanics? Journalist Erika L. Sanchez wrote in 2013 that over 157, 000 Hispanics served in the military then. By the way, her article at http://nbclatino.com/2013/01/01/u-s-military-a-growing-latino-army/ gives the rest of us a little insight into the Latino community’s military leanings.

I hesitate to come up with the number of Pacific Islanders serving in the military since the information is even older than that for Native Americans and Alaskan Natives (Did you notice they were grouped together?) or Hispanics. It’s also included with that of Asians, so the categories are Asian-Pacific Islanders rather than Pacific Islanders.

As for Afro-Americans or Blacks – readers, which name do you prefer? – the closest I can figure out is that 370,842 Blacks or 16% of the Blacks in the United States served in the U.S. military… in 2011.

None of these statistics is current. It takes time for the military to collect and compose their data, but I had been hoping for numbers that were a little more timely.

And now the biggie: just how much is The Veterans Administration spending on veterans with kidney disease?

Finally, a fairly current article. In April of this year, MedPage Today at https://www.medpagetoday.com/meetingcoverage/nkf/64668 offered this information from Kristen Monaco’s article:

Rajiv Saran, MD, of the University of Michigan, and colleagues found the total cost of CKD care in the Department of Veterans Affairs healthcare system increased from $12 billion in 2006 to $19 billion in 2014 in current dollars. Adjusted for inflation, the increase was 26%, the researchers reported as a late-breaking abstract at the National Kidney Foundation’s 2017 Spring Clinical Meeting.

More than three-fourths of the VA’s aggregate spending each year on CKD patients was dedicated to patients with either stage 3a or 3b disease. However, the average cost per patient to treat increased with each worsening stage of CKD, with non-dialysis stage 5 CKD being the most expensive.

To all those who served, whether or not you developed kidney disease, thank you from the bottom of my heart.

 

Until next week,
Keep living your life!

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Christmas TreeChanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By Menorahsharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and FullSizeRender (2)monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.urine container

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas bp cuffstation? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

portal_in_time_cover_for_kindleI just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.IMG_2979

Until next week,

Keep living your life!

The CKD/Diabetes Dance

Welcome to the last blog for National Kidney Month. First thing I want to do is let you know it’s been made abundantly clear to me that I should be promoting my books {never thought of myself as a sales person} as a way to help spread awareness of Chronic Kidney Disease.Digital Cover Part 1

Book Cover

Here goes: What is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Books of Blogs, Part 1 and The Book of Blogs, Part 2 are all available in both print and digital on Amazon.com.

Students: do NOT rent any of these for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.

Everyone else, there are programs available on Amazon to share the books with others, buy a digital copy at minimal cost if you’ve ever bought a print copy, and periodic free days. Oh, and please do write a review once you’ve read the books.Part 2

Another way I’ve been spreading awareness of CKD this month is by guesting on a radio show last Monday night.  Many thanks to Andrea Garrison of Online with Andrea for celebrating National Kidney Month by interviewing me about CKD. Hopefully, you’ve already heard it but here’s the link anyway: http://www.blogtalkradio.com/onlinewithandrea/2015/03/23/chronic-kidney-disease

onlinewithandreaStill uncomfortable with selling my books, although not at all with spreading Chronic Kidney Disease Awareness, I’m glad to move on to the topic of the day which is what does Diabetes, Type 2 do to your kidneys.  I’ve been researching this, and have found quite a bit of information about Diabetes causing CKD, but not that much about developing Diabetes, Type 2 while you have CKD.

blood glucoseThe obvious thing to do here was to start with the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html.

When glucose {blood sugar} builds up in the blood instead of going into cells, it can cause two problems:

Right away, your cells may be starved for energy.

Over time, high blood glucose levels may hurt your eyes, kidneys, nerves or heart.

Okay, that would help explain why I’m so tired most of the time, but I’m more interested in how Diabetes “may hurt your…kidneys….” right now.

DaVita at http://www.davita.com/kidney-disease/diabetes/the-basics/diabetes-and-chronic-kidney-disease/e/427  explained how and effectively:

When there is too much sugar in your blood, the filters in your kidneys (called nephrons) become overworked.

Tiny blood vessels {glomularli}  transport blood that needs to be filtered into the nephrons. Excess blood sugar can damage these tiny vessels, as well as the nephrons themselves. Even though there are millions of nephrons, the healthy nephrons must work harder to make up for the ones that are damaged. Over time, the healthy nephrons will become overworked and damaged if your blood sugar remains high. Your kidneys may lose their ability to filter fluid and wastes and may no longer be able to keep you healthy.

CKDThis sounded awfully familiar to me, especially the last part. Well, no wonder!  On page 82 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

… a number of nephrons were already destroyed before you were even diagnosed {with CKD}. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.

Two different diseases, both of them damaging your kidneys in the same way.  Wait a minute here.  I already have kidney damage to the tune of a GFR of 49.  Does this mean I’m in real trouble now with the pre-diabetes that’s been being treated for the last couple of weeks?

Well, no.  The idea of treating the pre-diabetes is so that it doesn’t become Diabetes.  The principle is the same as it is with CKD: catch it early, treat it early, prevent more damage if possible.

But wait.  There are more similarities between CKD and Diabetes, Type 2.  According to The American Kidney Fund at http://www2.kidneyfund.org/site/DocServer/Diabetes_and_Your_Kidneys.pdf?docID=222

African Americans, Native Americans, Latin Americans and Asian Americans are more likely to have Type 2 diabetes.

 Back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 13 this time.races

Nor was I a Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American, ethnic groups that have a 15 to 17% higher occurrence of CKD.

No wonder Diabetes can cause CKD.  Now I’m wondering if CKD can cause Diabetes or if the two are simply concurrent most often. While the infograph from Healthline at http://www.healthline.com/health/type-2-diabetes/statistics-infographic didn’t answer this question, the information included was too good to pass up. I urge you to take a look at it for yourself by simply clicking on the address.

The following simple, yet eloquent, sentence leaped out to me as I read a study published in the 2010 American Society of Nephrology Journal at http://cjasn.asnjournals.org/content/5/4/673.full.pdf

CKD prevalence is high among people with undiagnosed diabetes and prediabetes.

 Maybe that’s the key: undiagnosed.  I know I wasn’t particularly worried about the several years of a high A1C test result until I heard the word pre-diabetes.  Whoops! Time for a reminder of what this A1C test is from page 54 of my first book.

insulin resistanceThis measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.

While I may not fully understand if CKD can cause pre-diabetes or Diabetes, type 2, it’s very clear to me that the two MAY go hand in hand.  There’s no reason to panic, folks.  But there is plenty of reason to have yourself tested for both pre-diabetes and Diabetes, type 2 via the A1C.  After all, you have CKD.

Until next week,

Keep living your life!

Happy Anniversary… Sort Of

4weddingYesterday was our first anniversary. Given my Chronic Kidney Disease complicated bouts of bronchitis and Bear’s surgery, it’s been a medically challenging year for us.  We were glad to start Year Two as a married couple, but not before we celebrated the end of the first year by eating the piece of wedding cake our well-meaning friends had insisted be placed in an airtight plastic bag and frozen for a year.

Of course, that meant to me that we should have the special ground coffee I had ordered for the wedding with the cake, so I saved some of that, too. My daughter, Nima, had been a Starbuck’s barista for a time and carefully explained to me that you don’t freeze or refrigerate coffee.  So I just folded over the top of the bag and clipped it shut.

Those of you clutching your stomachs as you run for the restroom (weird word that) know exactly what happened.  This is ridiculous, I thought.  That’s a long standing tradition.  How could anything so romantic make anyone sick?  Hah!

And that led me to wondering how and when this tradition started. The answer I found left me laughing.  You will too when you remember we had each passed 65 when we married. According to http://www.hudsonvalleyweddings.com/guide/cakehistory.htm, “The tradition has its roots in the late 19th century when grand cakes were baked for christenings. It was assumed that the christening would occur soon after the wedding ceremony, so the two ceremonies were often linked, as were the cakes.”

Hang on and you’ll eventually see what the wedding cake tradition and the coffee have to do with CKD.

Back to the cake:  I scouted around and found this freezing guide at http://www.home-storage-solutions-101.com/freezer-storage-times.html:download (6)

Bread & Desserts TIme
Baked bread and cookies 3 months
Cakes, pastries and doughnuts 3 months
Muffins and quick breads 3 months
Pancakes and waffles 3 months
Cooke or bread dough 1 month
Produce TIme
Fruits 1 year
Juices 1 year
Vegetables 8 months
Nuts 3 months
Dairy & Eggs TIme
Ice cream 2 months
Butter 9 months
Cheese 3 months
Eggs (raw, not in shells) 1 year
Milk 1 month
Meats TIme
Ground beef, pork & stew meats 4 months
Other beef (i.e., roasts, steaks) 1 year
Lamb and veal 9 months
Ham 2 months
Pork chops 4 months
Pork roast or loin 8 months
Bacon and sausage 1 month
Poultry TIme
Chicken and turkey (whole) 1 year
Chicken and turkey (cuts) 6 months
Ground turkey and chicken 4 months
Seafood TIme
Fatty fish (i.e., mackerel, trout) 3 months
Lean fish (i.e., cod, flounder) 6 months
Crab 10 months
Lobster 1 year
Shrimp and scallops (unbreaded) 1 year
Miscellaneous TIme
Casseroles (cooked) 3 months
Paste and rice (cooked) 3 months
Soups and stews 2 months

 

This is not the gospel of freezing food, but I wanted to give you a general guideline.  Did you notice that “3 months” for cakes?  I think I’m beginning to understand the stomach ailment now. (She groaned.)

That, of course, made me wonder how long ground coffee could keep if it wasn’t frozen or refrigerated, which would have made it take on the taste of its neighbors and help destroy its own wonderful flavor. I went to http://www.eatbydate.com/drinks/coffee-tea-shelf-life/coffee-shelf-life-expiration-date/ for this chart.

 

(Unopened/Sealed) Pantry Freezer
Past Printed Date Past Printed Date
Ground Coffee lasts for 3-5 Months 1-2 Years
Whole Bean Coffee lasts for 6-9 Months 2-3 Years
Instant Coffee lasts for 2-20 Years Indefinite
(Opened) Pantry Freezer
Once Opened Once Opened
Ground Coffee lasts for 3-5 Months 3-5 Months
Coffee Beans last for 6 Months 2 Years
Instant Coffee (freeze dried) lasts for 2-20 Years Indefinite

cup-of-coffee-2

 

 

Ugh! A year is substantially more than the 3 to 5 months suggested.  Okay, so now you have the back story.

Book CoverThanks for being patient. Here’s where the CKD comes in. Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.  If they’re busy taking care of food poisoning (or whatever you call eating improperly or overly frozen or stored food), they have less time – or is it energy? – to pay attention to their typical jobs.  There’s even a theory that food poisoning can further compromise our already compromised immune systems.  There’s more information at http://www.medic8.com/healthguide/food-poisoning/kidney-failure.html

So much more than this has happened since last week.  On March 25th (okay, so that was over a week ago), we presented at The Salt River Pima Maricopa Indian Community Family Health Fair. That’s where these pictures were taken.  I’m seriously considering using the SlowItDown picture as a business card and welcome your opinion about that.SlowItDown business cardhealth fair.Salt River Great Seal

We were also able to attend my father’s family’s reunion and, more importantly, spend time with my brother, Paul, and sister-in-law, Judy Peck, in Florida which meant I was able to share both the book and SlowItDown with a Boca Raton hospital, a Brandon nephrology practice, and AAKP of Florida.  Public thanks to all of you for your kind reception.

Twitter people have been retweeting and favoriting both SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s tweets like crazy which kidney-book-coverI greatly appreciate.  Hey, we’re still the new kids on the block, you know.

There’s also a profile coming up in the Medicare magazine, but I haven’t received a date for that yet.  Another radio interview – this time for SlowItDown – is in the works for July.  There’s even the possibility of public service announcements for SlowItDown in the Washington, D.C. area.  More on each of these as they’re solidified.

By the way, the first anniversary is traditionally paper.  What better gift (well, maybe that’s stretching it a bit) to give to the first anniversary celebrators of CKD families, friends, and co-workers?  Or send them over to the blog for more education.  If they print it, that’s paper, too.choclate Alex

Ah!  The light bulb goes on over my head!  I just figured out why Bear isn’t feeling the same way I am.  He doesn’t have CKD (thank goodness) and doesn’t have a compromised immune system.  His kidneys are doing a terrific job of getting rid of toxins… bless those two little guys.

Until next week,

Keep living your life!

Control That Chronic Condition

NKF-logo_Hori_OBThe National Kidney Foundation referred this reporter to me to discuss how I handle my chronic kidney disease.  Once she’d interviewed me, she decided to save the material and quotes I’d given her to use in an article on patient participation in their illnesses.

I have one thing to say to you, Laura Landro:  thank you.  Thank you from the bottom of my heart for making it clear that we CAN slow down the decline of our kidneys.  Thank you from the bottom of my heart for getting that message to so many people in one fell swoop.  And thank you from the bottom of my heart for making certain people know about SlowItDown.

While I added the images for the blog, this is the article as it appeared in the Wall Street Journal last Monday:  wsj

Patients Can Do More to Control Chronic Conditions

In the absence of cures, people can learn how to slow kidney disease, diabetes and other ills

By Laura Landro

By the time Gail Rae-Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.

For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can’t turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.

As simple as that sounds, experts say, patients often don’t hold up their end of the bargain, and doctors don’t always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.

“The whole goal in conditions that are lifelong, and aren’t going to go away, is to stabilize them and keep them as stable as possible for as long as possible,” says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.

Patients’ Role

Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. “Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes,” Dr. Wagner says.

Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.

But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a “renal diet” that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.

Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.

There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc.  The company says it educates about 10,000 patients annually at free “Kidney Smart” classes across the country.

Getting the Word Out                     Book Cover

Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.

“People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death’s door,” she says.

Ms. Rae-Garwood wrote a 2011 book, “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,” and started a blog to offer its contents free online. She developed an educational program, kidney-book-coverSlowItDown, which is used by health educators to provide free classes in various communities such as the Salt River Pima-Maricopa Indian Community in Phoenix.

She acknowledges that it isn’t always easy to follow her own advice. “The disease is somewhat in control, but I’m getting older,” Ms. Rae-Garwood says. “And while I can control my renal diet, it’s harder to lose weight, and exercise isn’t always an option since I’ve hurt this or that on my body.” She takes blood-pressure and cholesterol medications, and tries to keep stress levels down.

She retired from both a college teaching post and acting last year but still keeps up a Facebook page, Twitter account and her blog to get the word out. “I’m serious about getting the necessary education to the communities that need it,” she says.

The article was published while I was still in Los Angeles after a Landmark Worldwide weekend.  I had no car, didn’t really know where I was, and had no idea how to get to a newsstand… if those even still exist.  Luckily, my daughter Nima – all the way on the other side of the United States – had gotten a print copy.  She’ll be mailing it to me any day now. (Right, Nima?).

I’m old fashioned enough that even if I’ve printed a copy of the article from the internet, I want to feel the pulp of the paper (if that’s what paper is still made from) in my hands and let it yellow with age in my files.  I am one happy Chronic Kidney Disease advocate these days.

Until next week,

Keep living your life!

SlowItDown More

KwanzaaThe best way I can describe the way I think of this holiday season – Thanksgiving, Chanukah, Christmas, and Kwanzaa – is that it’s a reminder to share, to give, to donate… and that’s why this is another blog about SlowItDown.  Not all who read this blog have Chronic Kidney Disease (thank goodness), but most of you know someone who does, or know someone who knows someone who does, and so forth.  Some of you are doctors, work with doctors, or are patients of doctors. Share SlowItDown with them. Let’s see how many people we can educate about their own disease.  It gave me solace to learn just what was going on in my body and what I could do to help myself.  My hope is it will offer them the same.Christmas Tree KidneySteps.com is another kidney site.  Vicki Hulett, one of the authors of The Five Step Survival Guide for Diabetes, High Blood Pressure, and Dialysis, a kidney transplantee, and the administrator of the site was glad to help spread the word when I first instituted the SlowItDown project and offered to print an article about it if I’d like to write one.  Oh boy, did I! And here it is: I am part of an at risk community for Chronic Kidney Disease.  I’m over 60, not Black, not Hispanic, not Native American, just over 60. That’s enough to make me part of an at risk community. To make matters worse, 59% of the United States’ population is at risk for Chronic Kidney Disease… whether they are part of a high risk community or not. MenorahWhen I was first diagnosed, I was confused.  What is this?  How did I get this disease? I’d never heard of it before.  I contacted relatives near and far; no one had ever heard of this in the family before. I was scared, too.  Did this mean I was going to die? I couldn’t understand what my nephrologist was saying.  Nothing was getting in so I couldn’t respond to his, “Do you have any questions?” I went home and kept this a secret while I quietly mourned what I thought was my impending death. But not for long.  I’m a non-fiction writer and that means I can research.  So I did. ThanksgivingThen I wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. You can see where I got the title.  I started doing book signings and book talks, then radio shows and I finally figured out a Facebook page and a Twitter account for the book would help disseminate the information. But it just wasn’t enough to get the information I’d needed out to the people who needed it now: the newly diagnosed. That’s when I began SlowItDown, a project to bring free Chronic Kidney Disease education by trained instructors to any community that needs it.  We were invited to the Salt River Pima – Maricopa’s Annual Men and Women’s Gathering and will be in the community once a month for ten months offering this education.  Both the Chinese Christian Community and the Burmese Community have asked us to present. I’d like to see SlowItDown in every community that needs it.  Let us know via our Facebook page which communities you’d like to see us help and I’ll contact them. If you know me at all, you know I didn’t stop there.  After the Salt River Pima – Maricopa Indian Community invited us to teach there, SlowItDown presented at their 4th Annual Men and Women’s Gathering.  There were members of several different tribes there who took the education back to their communities.  I donated books to a member of each of the tribes so they would have a reference right there in their hands when they went home again.Salt River Great Seal I’m still not done.  Right after the new year, there will be an ‘Encore’ article about SlowItDown in The Wall Street Journal.  More about that when I have the specific date.  I’ll be interviewed at onlinewithandrea, a web radio show, about SlowItDown in the early part of next year too.  Again, more about that when I have the specific date. The National Kidney Foundation calls upon me every so often to give interviews or write articles and, each time, SlowItDown is right there in the middle of it. kidney-book-coverSlowItDown is not only the name of the project; it’s the central idea behind the project… and the book. I urge you to take a minute and consider who knows someone, who knows someone else, who knows a third person who just might need to know that CKD is not necessarily a death sentence and that they can slow it down.  That’s the person who needs SlowItDown… and that person just might want to bring SlowItDown to their community. There’s still time (Look at me!  I’m a late night television commercial!!!) to gift someone who could use it with What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for the holidays.  Keep in mind that if you have EVER ordered the print copy of the book on Amazon.com, you get the digital copy at 70% off.  Who knows?  The book may persuade the specific community you’ve got in mind to go ahead and call me (623-266-2609) or contact me via the Facebook page or Twitter to arrange for those KidneySmart classes – taught by DaVita’s own Annette Folmer – to be brought to their community by SlowItDown. On the home front, I’m happy to report that no one has bronchitis, a viral infection, or the flu, and that Bear is healing nicely and can even try walking in just four more days.  Oh, happy day!  What makes this even better is that Lara and her sweetheart hosted everyone for Thanksgiving and that Sean and Kelly will be hosting the whole family for Christmas.  All I hosted this holiday season was a small neighborhood Chanukah party.  I was having such a good time at that I almost forgot about the latkes.  Good friends, good neighbors, wonderful family, and we almost have our health back.  Now I ask you, what more do we need? Until next week, Keep living your life!Book Cover

SlowItDown

I’m so involved with kidney projects that sometimes I forget other people – like readers – are not necessarily on the same page with me (like that writers’ turn of phrase?).  Luckily, people are not afraid to ask me what I’m talking about… and that’s exactly why this week’s blog is about SlowItDown.

Let’s start with the press release; that should introduce the project well:

 SlowItDown                                          CKDed@cox.net                                                            602-509-4965

kidney-book-cover

Chronic Kidney Disease is on the rise.  One of nine people in the mainstream has it and may not even know.  Blacks, Hispanics, Asians, and Native Americans have a much higher incidence of the disease in their communities. This disease cannot be cured, but it can be slowed down if you’re educated to do so.

SlowItDown is the product of a project created by Gail Rae-Garwood when she participated in a Landmark Worldwide leadership program. Landmark is a training and development company known for their flagship course The Landmark Forum (www.landmarkworldwide.com).

The project provides trained Chronic Kidney Disease educators from KidneySmart on a monthly basis at no cost to any community that needs it within the United States.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of communities possible.

Ms. Rae-Garwood said, “I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I’ve written a book (What Is It and How Did I Get It? Early Stage Chronic Kidney Disease available at Amazon.com and B&N.com) so Chronic Kidney Disease patients can see how to manage their disease. I have a Facebook page, twitter account, and blog of the same name to disseminate information, but these still aren’t enough. Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to the communities that need it. “

I may have mentioned a time or two that SlowItDown is now educating in the Salt River Pima – Maricopa Indian Community right here in Arizona.  We are also working with both the Burmese and Chinese communities locally in an effort to bringing the class to them.  An upcoming Wall Street Journal article about activists for their illnesses will include SlowItDown (and me!).  We’re getting the word out there, just too slowly for my taste.  Notice the address and phone number on the press release if you’d like SlowItDown to bring this education to your community or another you know needs the information.Salt River Great Seal

The following is SlowItDown’s proposal:

Chronic Kidney Disease is increasing at amazing speed. All aspects of the population are being diagnosed with this disease. Almost 59% of the U.S.A.’s population is expected to have it soon.

While Chronic Kidney Disease is not curable, the progress of the decline in kidney function caused by this disease can be slowed down.  But people need to be educated that this disease exists, how to be screened for it and then how to manage it so that they are not immediately on dialysis or at death’s door.  People can live for decades with Chronic Kidney Disease if they know how to manage it.

SlowItDown can provide trained Chronic Kidney Disease educators on a monthly basis at no cost.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of people possible.

The educators will teach the basics, such as: what Chronic Kidney Disease is, how you get it, what the screening process is and – most importantly – how you slow down the progress of the disease via diet, medication, exercise, and weight control.

I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I can easily mail you a copy of my book so you can see for yourself how Chronic Kidney Disease patients can manage their disease.  I have a Facebook page, twitter account, and blog of the same name (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease) to disseminate information, but these aren’t enough.

Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to everyone who needs it.  SlowItDown now has its own Facebook and Twitter accounts, too.

We’re presently educating in the Salt River Pima – Maricopa Indian Community. With both the local Chinese and Burmese communities getting ready for this education.  You don’t have to be a member of a high risk group for this free education.  Although, sometimes all you have to do to be a member of a high risk community is be over 60 … like me.

Notice there’s even more information in it.  It’s beginning to make sense to me to reprint here  – in the blog – articles I’ve written about CKD.  I notice that each one has a little more or different information.  Keep checking SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Twitter and Facebook pages for tidbits about our disease and other interesting medical information that just might pertain to us.

Book CoverTalking (okay, writing) about the book, I just realized it’s for sale in the United Kingdom, Australia, Brazil, Canada, China, France, Germany, India, Italy, Japan, Mexico, and Spain.  Thank you, Amazon.com!

It’s the holiday season.  What better time to talk (I know, I know: write) about Amazon’s Kindle MatchBook program, not that you haven’t read it here before.  Here’s the part I like – if you have EVER bought a copy of the print book, you are eligible to buy the digital book at 70% off.  Gift a newly diagnosed patient or his/her family and friends with knowledge about this disease.  I know that’s what helped me cope during that panicky time when it was all so new to me.

Personally, we have a lot to be thankful for.  Bear’s cast is off after six weeks as of this morning, neither he nor I have any lingering effects of the bronchitis for me/viral infection for him, our children are all healthy, our two almost son-in-laws are exactly who we would have chosen had we any say in the matter (Hah!), and we are looking forward to when he (Bear) can walk again.

I intend to have a banner week!  Join me?

Until next week,

Keep living your life!

A Healthy Diet is Not Necessarily a Renal Healthy Diet

Many people have asked me why I just don’t follow a healthy diet for my kidney disease.  It’s one of those questions we hear again and again as early stage chronic kidney disease patients … and not just from those who think they know better, but from those who genuinely care about us and want to help. Today’s blog is meant to answer that question.imagesCALEX9DU

There were many food guides from the government before the introduction of the one we usually hear about, the USDA’s 1992 Food Pyramid. (See http://www.huffingtonpost.com/2011/06/02/usda-food for a fascinating history of the older ones if that interests you.) Although updated in 2005, this was the gold standard for a healthy diet.  We’ll be dealing with the 2005 revised version in this blog.

Michelle Obama changed all that in 2011 when she supported MyPlate as the new U.S. nutrition guideline in an effort to help control the obesity epidemic.  By then, I was already on the renal diet so didn’t really pay attention.

I wanted to use the government’s website since both Pyramid and MyPlate are their concepts, but since that wasn’t up due to the government shut down (didn’t expect to see that again in my lifetime), I relied on http://www.usaring.com/health/food/food.htm for information about the 2005 Pyramid and http://www.medicinenet.com/myplate/page2.htm#difference for the MyPlate information.  The renal diet information is from the diet my own renal nutritionist helped formulate. food plate

So what are the differences you ask?

measuring cupsLet’s start with the base of the Food Pyramid which includes 6 oz. of bread, cereal, rice and pasta a day with the stipulation that half of these be whole grain.  Sounds like heaven for a miller’s grand-daughter like me.  MyPlate suggests the same amounts. However, my renal diet considers a portion of pasta as 1/3 cup, not the ½ cup in the other two eating guides… however many calories a day I can eat.

That makes a difference because of the phosphorous and potassium CKD patients need to curb, to say nothing of our daily calorie limits.  Even the protein adds up.  For example, I’m limited to 60 grams of protein a day.  That doesn’t mean just meat.  My favorite angel hair pasta has 7 grams of protein for a 2 oz. serving.  Let’s say I’d like half a cup.  That’s 4 oz. and already 14 of my 60 protein grams.  Got to save some of those protein grams for the meat (turkey) balls!

Sometimes my 1200 calories seem like an awful lot, but not on the days I eat pasta or rice. You also need to keep in mind that the USDA bases their portion suggestions on a 2000 calorie diet. That means I, for one, will need to eat less food in each category and so will you if you don’t require 2000 calories a day.colander

What about vegetables?  Those are healthy, right? The 2005 Pyramid suggests 3-5 cups a day.  I can’t do that.  MyPlate suggests 2.5 cups daily, but their cup for leafy salad greens is actually two cups.  For the renal diet, one serving is ½ a cup. The government also recommends beans and sweet potatoes which CKD patients cannot eat due to their high phosphorous and potassium levels.    We need to stick to vegetables that are low carb and to limit or avoid salty ones.veggies

Are you with me so far?  The pyramid suggests two cups of fruit a day, while MyPlate suggests 2-4.  That wouldn’t be a problem except for the serving sizes which are different between these two and the renal diet.  So no matter how healthy these are, I’m limited to three ½ cup servings a day.  What does that look like?  Today it was half a banana, ½ cup of blueberries, and one very small mandarin orange. As CKD patients, we need to be careful about (yep, here it comes again) phosphorous and potassium.  As a matter of fact, bananas are a once in a great while treat due to their high potassium content.

Meat and Beans is a little bit of a joke since beans are a no-no for us.  The pyramid suggests including nuts and seeds, too.  Uh, not for CKD patients.  Why?  Because of the (you know it!) phosphorous and potassium.  There’s also the calorie consideration here.  MyPlate has the same difficulties for us, although they suggest lean meat.  We are urged not to have red meat too often and cheese – I know it’s a dairy product – is included in our meat group.  As renal patients, protein is not our friend with many of us being limited to 5 oz. This group is where you get most of your protein.salt

Hang in there, almost done. The pyramid recommends 3 cups of dairy. MyPlate recommends 2 to 3 servings and they include cheese.  (I find myself wondering if they mean real cups or MyPlate cups.) The most glaring difference is that the renal diet allows ½ cup of milk or plain yoghurt per day. I use a substitute since I’m lactose intolerant, but that’s still only 4 oz. Why such drastic limitations?  Tricked you.  This time, it’s not only the phosphorus and potassium, but also the sodium.

As far as oils, although nothing is mentioned about them on the actual plate for MyPlate, the pyramid does mention they should be used sparingly.  The renal diet restricts them to 4 or 5  one teaspoon servings a day and is quite specific about which to use and which to avoid.

Whee, what a trip that was.  You do need to understand that this blog is based on MY renal diet for MY weight with MY restrictions at MY stage of the disease.  Other CKD patients’ diets will vary, but none of us can “just eat a healthy diet.”

The TableSlowItDown continues to educate in The Salt River Pima – Maricopa Indian Community and has been invited to present at their November 5th Health Fair.  Follow us on Twitter and Facebook.  I see big things in our future.

Likewise, book sales – both digital and print at Amazon.com and B&N.com – are holding their own especially in India and Germany where the book is considered the cheapest (hey!) form of self-education about CKD.

I’m hungry.  Now let’s see, maybe there’s a vegetable unit – low carb, of course – in today’s menu.  Better go check my KidneyDiet app.android_welcome

Until next week,

Keep living your life!

It Isn’t What I Thought It Would Be

I had my blog for today mentally written before I even sat down at the computer tonight.  I met with Dr. Jennifer Weil, of The Phoenix Epidemiology and Clinical Research Branch (PECRB) of the National Institutes of Health (NIH) Research Clinic on Saturday. Although a research nephrologist (specialist in the kidneys and high blood pressure), she is highly involved in the kind of Chronic Kidney Disease education and prevention I am interested in providing.  She’s so involved that she’s actually written material that had wonderfully apt analogies of her own devising. Those were what I had planned to write about today.    NIH

On Saturday, Dr. Weil gave me a DVD of her informational slide show and permission to use any or all of it for my own devices… or so we thought.  Once I sat down to write the blog and choose the slides I was going to use, I discovered she’d given me a DVD of another project: Looking Out for Our Health  – Slowing Down Kidney Disease, aimed at the Native American community with Native American patients telling their stories. Most of the people in the DVD were from the Salt River and the Gila River Indian Communities – the ones I’ve been trying to contact.

Originally, my Landmark Education Self Expression and Leadership project had been to bring CKD education and prevention classes to the local tribes. In my endeavor to do so, I learned from the Indian Health Services’ (IHS) Dr. Charles Rhodes, the Director of their Diabetes Prevention Program, that each tribe has been granted a percentage of  a $150,000 grant for diabetes education and prevention.  Because not all the tribes have decided to use the money for educational purposes (some use it for treatment), he is still helping me 601px-Indian_Health_Service_Logo.svglocate the tribes that may need SlowItDown’s free, sustainable program.

When I spoke with Dr. Andrew Narva, Director of The National Kidney Disease Education Program at the Division Of Kidney, Urologic, & Hematologic Diseases of at The National Institute of Diabetes and Digestive and Kidney Diseases which is part of the NIH and  U.S. Department of Health and Human Services  (This is the same man who asked me to call him Andy????), he explained that I may have missed the existence of many of the CKD education programs because they were under the auspices of the Diabetes Prevention and Education programs on the reservations.

Well, then, it looks like SlowItDown (the name of my Landmark project) would have to change its target communities.  Back to Dr. Weil and her slides.  She was very open to the idea of SlowItDown and began helping to pinpoint possible communities right away.  That’s when she showed me the slide show I thought I was going to write about tonight. But, of course, I can’t do that until I reach her.  The upside of that is we may have the topic for next week’s blog.

So now what?  I know, I’ll write about the Chronic Kidney Disease support groups I’ve found on Facebook.  First, I will warn you that certain groups and people (Not included in my list) are not real.  Well, I suppose they are real people but they are posing as other people in order to make themselves more acceptable to their perceived buyers so they can sell Chinese herbal medicine.sad face

There is quite a bit wrong with that.  I find the obvious deceit insulting.  Herbs themselves may be very effective, but as CKD patients we may need to take less of them since our kidneys cannot filter them out as well as non-CKD patients’ kidneys can.  In addition, what may be healthful for non-CKD patients is not necessarily healthful for CKD patients. Just ask your nutritionist about eating the traditional healthy diet.  So many of those foods are really hard on the kidneys. It’s the same principle here.

Now, the groups.  Please remember you may be happy with one group, but not another.  You have to find your own comfort level.  Also, some of the groups are closed and you need to seek permission to join.  Contact the administrators about that.  The best part of these groups is that they are all truly patients and usually run disclaimers or statements letting you know they are not doctors and you need to contact your nephrologist before you follow any of their advice.

Ready? Then keep in mind that these are in no particular order and all welcome CKD patients.

Kidney Health Liberated

Kidney Disease and Diet Ideas and Help 1

Show Your Scars Tour

Kidney Failure

Kidney Disease Is Not a Jokepeople talking

Chronic Kidney Disease “CKD” Awareness

The Transplant Community Outreach (I write ‘Kidney Matters’ for them at their request)

Renal  Patient Support Group

Transplant Friends

Chronic Kidney Disease

P2P (Peer To Peer)

But You Don’t Look Sick

TCO Women’s Health

Kidney Disease Shout Board

Support for Those Affected by Kidney Disease

What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (like how I snuck that in at the end of the list?)

Some of these groups seem to be for other kinds of patients, but I’ve found each of them welcoming.  Some seem ‘dead,’ but pick up in a short time.   Others that are going strong as I write may not be around by the time you get around to reading the blog.  It’s just reassuring to know there are other CKD patients out there to share you angst, glories, numbers, and experiences with.  Try each group to find a few you like.

As far as the book, sales are steady both here and in Europe.  The funny thing is I’m surprised each time I get a check because I forgot that’s why I started this blog. While the book was the first step to sharing the information I have, this blog has become the primary sharing place.  Of course, if you’d like to buy some books to share with those that don’t have any information and no computer Amazon.com and B&N.com are the places to go.  If you want the book signed, just contact me at: myckdexperience@gmail.com.

We’re very late today because it’s my turn to be the caregiver in the family. It takes a lot of time, but not so much that I would completely miss blogging.

Until next week,The Table

Keep living your life!

Father’s Day Equality Questions

Here’s hoping your Father’s Day was as much fun as ours was. By the way, Bear  – being the manly man he is – started the day by vacuuming.  I was impressed.

We were lucky enough to have almost all our children here except for Nima, who lives in New York.  We missed you, sweetie.  As it was, Abby had to leave early since she teaches blues dancing on Sunday nights and Sean had to come late due to work.  blues

I’d suggested we make this a day for all the foods Bear doesn’t eat anymore because they’re not on my renal diet.  He is wonderfully supportive of me, you know.

His requests: beer brats (I got to soak them!), potato salad (thank you, Kelly) , beer to drink (we’re such big drinkers that almost the entire case of beer bought for the wedding guests and left over is still sitting in the pantry), a dessert from Bear’s family called (I am not making this up) You’re-lucky-if-there’s-any-left made by Lara and root beer floats. Thanks for the makings for that and the tortilla chips I forget to get, Abby.

I just had to stick my two cents in by adding guacamole and chips, and fresh cherries. Since I couldn’t eat most of this food and Abby doesn’t like most of this, I also made turkey spaghetti sauce and angel hair spaghetti for us.

To our delight, everyone still here after dinner agreed they wanted to watch the movie Bear chose, “Red,” despite the fact that it was targeted to the over 50s.  I would not change my combined family of adult children for any other family in the world.

grillOne step-daughter’s boyfriend did the grilling for us while the other changed our air conditioner filter. Why would anyone build a house with these filters on a ten foot ceiling? That’s when I started to notice the differences between the men and the women.

We women did not do any of the outside or maintenance jobs, although the men jumped right in to help with the cooking and clean up. Our guys are good ones and have accepted that there is no such thing as women’s work and men’s work, but have we women? And what does that have to do with Chronic Kidney Disease anyway?

Funny you should ask because I actually have an answer.  In an abortive attempt to clean off my desk this morning, I came across the March issue of Neprology News & Issues that I’d picked up at the last renal conference I attended. Being a firm believer in multi-tasking – after all, I was doing the laundry and overseeing the yard maintenance at the same time I was cleaning my desk – I decided to flip through it while I waited for a call from The National Institute of Health.

Right there on page 20, I found the following sentence, “However, both sexes experienced increased risks of all-cause mortality, cardiovascular mortality and ESRD with  lower estimated glomerular filtration rate and higher albuminuria.”

Let’s backtrack a little. Mortality deals with death, cardiovascular mortality with death from diseases of the heart and blood vessels including those in the kidneys, ESRD is End Stage Renal Disease, glomerular filtration rate and albuminuria are used to judge the degree of kidney function decrease.

There was only one thing wrong with this statement of equality as I saw it.  What did that “However” deal with?  I looked further back in the paragraph and found that a study had been preformed at the Johns Hopkins Bloomberg School of Public Health and the Chronic kidney Disease Prognosis Consortium which found that “… the overall risks of all-cause mortality were higher in men at all levels of kidney function.” Oh, I was confused!

I finally figured out that men were at higher risk of any medical cause of death whether they had kidney disease or not, while women had heightened mortality only if they had kidney disease. So, men and women aren’t equal?cardiovascular

My research sensors started tingling. What else was different about men and women with Chronic Kidney Disease?

According to a study published in US National Library of MedicineNational Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/9641172, “This exploratory analysis of the MDRD study indicates a slower mean GFR decline in women as compared with men. The slower mean GFR decline and suggestive evidence of a lesser beneficial effect of the low protein diet and low blood pressure interventions in women suggest that gender differences should be considered in trials of the effects of these interventions on the progression of renal disease.” This is an older study (1998) and deals with gender differences in trials.  MDRD means modification of diet in renal disease. So, the study deals with whatever gender differences are associated with adhering to the renal diet.

The 2007 article Prevalence of chronic kidney disease in population-based studies: Systematic review by Qiu-Li Zhang* and Dietrich Rothenbacher which appears at http://www.biomedcentral.com/1471-2458/8/117, concludes with the following sentence: “Accurately detecting CKD in special groups remains inadequate, particularly among elderly persons, females or other ethnic groups such as Asians.”bmp

So first, it is suggested that women be included in CKD trials; then we’re told it’s difficult to get information about women with CKD.

Aha!  An article about a current study from the same Johns Hopkins Bloomberg School of Public Health and the Chronic Kidney Disease Prognosis Consortium (CKD-PC) mentioned above is posted at http://www.sciencedaily.com/releases/2013/01/130130132417.htm. It establishes that men and women are equal as far as Chronic Kidney Disease, ” ‘Our results contrast with some previous studies suggesting that the association of estimated glomerular filtration rate with mortality is weaker in women. We found the association between chronic kidney disease and mortality risk to be as strong in women as in men. Low estimated glomerular filtration rate or albuminuria should be considered at least as potent a risk factor in women as it is in men,’ said Josef Coresh, MD, PhD, MHS, the Consortium’s principal investigator and professor in the Bloomberg School’s Department of Epidemiology. ”

On another note, Dr. A. Narva of the National Institutes of Health gave me some really good news today.  Although they’re not necessarily advertised off the reservations, most reservations have CKD education programs included in their diabetes programs. I know I’m not responsible for getting CKD education on the reservations, but I definitely felt a sense of relief knowing that the information is available there.  I will continue to hunt for the few reservations without the information available and thank Dr. Narva for the referrals he offered me.Book Cover

As for the book, I think I’ve lost track of sales.  They seem to be constant and holding their own.  Do I urge you to buy a copy for someone who is newly diagnosed? Absolutely.  Remember: digital and print versions are available at Amazon.com and B&N.com.  If you’d like a signed copy, contact me at myckdexperience@gmail.com. Should you know someone who needs it but can’t afford it, please forward his/her information to me.  The same for practices that need a copy.

Until next week,

Keep living your life!

Keep That Liver Lively

It feels so good to be (relatively) healthy again. I’ve spent the last several weeks being tested, running to doctors, and feeling like I just plain didn’t want to move… not even for a good cup of coffee.  I like the way I feel now.  Maybe I rest more than I’ve been used to, but I get to do whatever I want again.  That’s the way to live.  I like it so much that I intent to keep my life this way.YGCnpYEUFRtlrF00_f9frLXF_JWiNWNHS9AVZmM1PxI

And that’s why I’m taking the series of Hepatitis B inoculations that are recommended for anyone with a compromised immune system. Chronic Kidney Disease presents us with one of those. Aren’t we just the lucky ones (she wrote with a keyboard that dripped sarcasm)?

“Hepatitis B is one type of hepatitis – a liver disease – caused by the hepatitis B virus (HBV). Hepatitis B spreads by contact with an infected person’s blood, semen or other body fluid. An infected woman can give hepatitis B to her baby at birth,” according to MedlinePlus, a service of the U.S. National Library of Medicine, National Institutes of Health located online at: http://www.nlm.nih.gov/medlineplus/hepatitisb.html.

liverLet’s backtrack for a little etymology here.  The Online Etymology Dictionary at http://etymonline.com/index.php?allowed_in_frame=0&search=hepatitis&searchmode=nl  shows the following: “hepatitis (n.)  1727, coined from Greek hepatos, genitive of hepar “liver,” from PIE root *yekwr- (cf. Sanskrit yakrt, Avestan yakar, Persian jigar, Latin jecur, Old Lithuanian jeknos “liver”) + -itis “inflammation.” While this is probably too much information, we can see that the term comes from the Greek for liver and the Latin for inflammation, and was first commonly used in 1727. The key word here? Liver.

Okay then, what’s the big deal with the liver you’re probably asking. While it performs over 500 different functions to keep your body going, one of its primary functions is to filter your blood – just like your kidneys.  If your kidney function is already compromised, you’ve got to be careful not to let your liver function become compromised, too.

We’ve all heard the stories about people with an alcohol dependency dying of cirrhosis – permanent scarring of the liver.  This is a Bubba Miseh. That’s Yiddish for an old wives’ tale.  You can have liver damage from any number of causes. Hepatitis B is one of them.

“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 from the Mayo Clinic at: http://www.mayoclinic.com/health/hepatitis-b/DS00398.  I especially recommend their site because it is written in the English we all know and is easily understood.

According to the handout from the U.S. Department of Health and Human Services’ Center for Disease Control and Prevention which I was given by my doctor’s medical assistant, the inoculations come in sets of three.  I’ve had the first and was told to come back in a month for the second, with the third scheduled for a month after the second.  In other words, they are spaced over a period of six months.shot

But what if my primary care doctor hadn’t recommended these to me, how would I know if I have Hepatitis B?  According to MedicineNet.com at http://www.medicinenet.com/hepatitis_b/article, “Acute hepatitis B is the period of illness that occurs during the first one to four months after acquiring the virus. Only 30% to 50% of adults develop significant symptoms during acute infection. Early symptoms may be non-specific, including fever, a flu-like illness, and joint pains. Symptoms of acute hepatitis may include:

Those are fairly common symptoms for many illnesses and as many as half the people with this virus may not know they have it.  I might have been one of that 50%.  So might you.

For chronic (long term) Hepatitis B, like Chronic Kidney Disease, there are no symptoms until the damage is done and the liver starts to fail.

Am I urging you to be vaccinated?  No, you’re quite capable of making up your own mind.  Besides, as I keep mentioning, I’m not a doctor.  Did I start the Hepatitis-B inoculations?  Absolutely!  Life is sweeter than it’s ever been.  I want it to go on and on.virus

Talking about life going on, the project to bring Chronic Kidney Disease to the Native American reservations has a name: SlowItDown.  You can expect to see both a Facebook page and a Twitter account with the same name this week.

The National Kidney Foundation asked me to guest blog for them this month and I discussed the project there, too. The address for this is: http://nkfstayinghealthy.wordpress.com/2013/06/06/what-is-it-and-how-did-i-get-it-early-stage-chronic-kidney-disease-experiences/  The NKF expects to promote it on their own Facebook page tomorrow. While this is not the first time they’ve asked me to write for them, each time they do I understand the honor it is and I thank them for the opportunity to spread CKD information via their site.

You already know DaVita (DaVita.com) has offered to supply Chronic Kidney Disease Educators to the tribes within sixty miles of Phoenix.  I have been speaking with the Health Directors of several tribes, but need help getting on the reservations.  I’ve found one or two reservations with Diabetes Education Program that we could easily piggyback on, but none with Chronic Kidney Disease Education Programs.  My appeal to my readers? Please, if you know anyone who is Native American, have him/her email me at myckdexperience.com or ask them for their number or email address and send it to me.

Book CoverIt’s funny: this blog started as publicity for the book and yet I hardly mention it any more.  Thank you to those of you who have bought or recommended the book. Thanks to some lovely people I met at Landmark Worldwide (formerly Landmark Education) the book is now in British Columbia and at the Evans Community Army Hospital in Colorado.  Any way this news can be spread is a good way in my book.  Oh, I meant that literally and figuratively!

Until next week,

Keep living your life!

The Wild West Isn’t So Wild These Days

Things are settling down now.  We had our first sleep-late-and- have-fruit-laden- pancakes (from scratch) since the wedding furor started.  Not bad!  Less than a month and we’re back to ourselves.  Of course, we did have several years to try it out so we knew what ‘ourselves’ meant first.

I’m not sure I mentioned this, but when people asked what we’d like for our no gifts wedding, I always answered, “Please, donate to a charity in our names if you feel you must give a gift.” Thank you, family, for taking me up on that.  Cousins Paul Brosnan, Marlene Mines, Flo Knudsen, and Mikki Knudsen (yes, the award winning children’s author – that Mikki Knudsen) donated to different cancer research units. Cousins Rich and Sheila Slotnick donated to The National Kidney Fund. 

How generous is that?  You are a wonderful family!  Peckolick side, we are so looking forward to seeing you at next year’s Florida reunion.th

I’ve mentioned that I’m a LandmarkEducation graduate several times on the blog.  I’m taking a course now that involves creating a sustainable project.  Naturally, I chose something to do with Chronic Kidney Disease.  It’s easy for me to do whatever it is myself, but this requires my not doing it, but rather setting it in place for other people to do, benefit from, and keep going.

What I want to do is bring CKD education and testing to the many Native American reservations here in Arizona, and then in the country, and finally, the world.  Native Americans have a higher incidence of CKD.  Some of the reservations do have Diabetes Prevention Programs in place now.  Diabetes is the primary cause of CKD, but CKD may cause diabetes, too.

Native Americans have the highest rate of diabetes in the world, yet they comprise only 1.5% of this country’s population. This is striking when you think about it.  Do you?  Has it ever crossed your consciousness?  I know it hadn’t crossed mine.  

Well, there are many tribal members who also have never thought about it. Someone needs to bring this to their attention, educate them, and maybe even prevent them from developing CKD which would prevent them from End Stage Kidney Disease (stage 5 when you need dialysis or a transplant – it’s when your kidneys stop functioning at all).

My thinking is that the educational aspect will lead the participants to be tested for something they probably have never heard of – CKD. While Caucasians are usually diagnosed around age 60, Native Americans develop diabetes most often in their mid-thirties.  All those extra years to be at a substantial risk of CKD!

I am requesting that anyone who knows anyone who is somehow involved with the reservations contact me. Words aren’t any good without action.  I’m looking for people who can help me get this started by introducing me to someone on the reservation.

This is a chart showing the high incidence rates of CKD among different races.  Notice, it only tracks up to 2009.  Adjstd_Incident_Rates_ESRD_Race

You can see the chart and more information about the prevalence of CKD in different races and age groups at: http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/

According to DaVita, “The rate of end stage renal disease among Native Americans with diabetes is six times higher than among non-Native Americans.” You can read more about Native Americans, diabetes, and Chronic Kidney Disease at: http://www.davita.com/kidney-disease/causes/assessing-your-risk/native-americans-and-chronic-kidney-disease-ckd/e/5007

I found this abstract of a study at: http://www.keepthefaith1296.com/parkinsons/reducing-the-burden-of-chronic-kidney-disease-among-american-indians-MTgzMzQyNDI=.htm

In order to address the growing burden of CKD, the Indian Health Service established the Kidney Disease Program to improve the screening of and the management of diabetics with CKD. Routine reporting of eGFR, yearly monitoring of protein excretion, utilization of renin-angiotensin system (RAS) antagonists, and aggressive control of blood pressure were implemented in association with enhanced patient and provider education. By 2006, 82% of hypertensive diabetics were receiving a RAS antagonist. Implementation of these efforts has been associated with a 31% decrease in ESRD incidence among AIs/ANs with diabetes. This program of improvements in CKD care implemented by a federal agency serving a high-risk population with limited resources may be a useful model for others.”

It sounds like exactly what is needed.  There’s only one problem.  Not one of the many Native Americans I’ve encountered while teaching at Phoenix College, Gateway Community College, Estrella Mountain Continuing Education Center, or three different campuses of Glendale Community College has ever heard of this program.  Not one of the many Native Americans I’ve met during film, television, or  commercial shoots, auditions, or live theater performances out here has ever heard of the program. Not one of the many Native Americans I’ve met at the countless dances I’ve attended here or the numerous LandmarkEducation courses has ever heard of this program.

After more research, it became clearer to me why.  Already underfunded, the Indian Health Service – which, by the way, is a division of The United States Department of Health and Human Services – has been hit hard this year by budget cuts.  So we have budget cuts to an already underfunded program.  I guess there is a need for outside help. I may have neglected to mention it, but another part of my idea is that it be free. 

Arizona is a fairly large state with over 6% of the population being Native American.  There are 21 federally recognized tribes here with two others petitioning for recognition as of March, 2007.  According to http://www.aaanativearts.com/tribes-by-states/arizona_tribes.htm, these are the federally recognized tribes as of that same date:tribes

  • Ak Chin Indian Community of the Maricopa (Ak Chin) Indian Reservation
  • Cocopah Tribe of Arizona
  • Colorado River Indian Tribes of the Colorado River Indian Reservation (Arizona and California)
  • Fort McDowell Yavapai Nation
  • Fort Mojave Indian Tribe (Arizona, California and Nevada)
  • Gila River Indian Community of the Gila River Indian Reservation
  • Havasupai Tribe of the Havasupai Reservation
  • Hopi Tribe of Arizona
  • Hualapai Indian Tribe of the Hualapai Indian Tribe Reservation
  • Kaibab Band of Paiute Indians of the Kaibab Indian Reservation
  • Navajo Nation (Arizona, New Mexico and Utah)
  • Pascua  Yaqui Tribe of Arizona
  • Quechan Tribe of the Fort Yuma Indian Reservation (Arizona and California)
  • Salt River Pima-Maricopa Indian Community of the Salt River Reservation
  • San Carlos Apache Tribe of the San Carlos Reservation
  • San Juan Southern Paiute Tribe of Arizona
  • Tohono O’odham Nation of Arizona (formerly the Papago)
  • Tonto Apache Tribe of Arizona
  • White Mountain Apache Tribe of the Fort Apache Reservation
  • Yavapai-Apache Nation of the Camp Verde Indian Reservation
  • Yavapai-Prescott Tribe of the Yavapai Reservation

Wow!  I have my work cut out for me… and so do you, help me get this sustainable program started.

Until next week,

Keep living your life!