Gluten Free

“…I started GF mid-April & my June lab work showed significant improvement. My next lab work is not until August, but I feel & look so much better, and because my BP dropped so much, my nephrologist took me off hydrochlorothorozide and reduced irbesartan from 300 to 75.” This is a small part of the message I received from a reader… and it intrigued me.

I take hydrochlorothiazide.  I know I looked it up at the time it was prescribed, something about fluid. Hmmm, it wouldn’t hurt to look it up again to refresh my (and your) memory. According to Medicinenet.com at http://www.medicinenet.com/hydrochlorothiazide/page2.htm, hydrochlorothiazide is prescribed for the following reasons:

“Hydrochlorothiazide is used to treat excessive fluid accumulation and swelling (edema) of the body caused by heart failure, cirrhosis, chronic kidney failure, corticosteroid medications, and nephrotic syndrome. It also is used alone or in conjunction with other blood pressure lowering medications to treat high blood pressure…. Hydrochlorothiazide can be used to treat calcium-containing kidney stones because it decreases the amount of calcium excreted by the kidneys in the urine and thus decreases the amount of calcium in urine to form stones….”

I didn’t recognize irbesartan specifically, although the sartan part was  familiar. According to the same source, but this time at http://www.medicinenet.com/irbesartan/article.htm, “Irbesartan is used to treat high blood pressure (hypertension) and to help protect the kidneys from damage due to diabetes. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. Irbesartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily.”

Oh, of course! I’m taking losartan for the same reason. I’d had hypertension for over 20 years before I was diagnosed with Chronic Kidney Disease. Even if I hadn’t, once I was diagnosed with CKD, a drug like this would have been prescribed.  As a matter of fact, when I complained to my primary care doctor that I was taking too many pills (mostly supplements), she came up with one that combined hydrochlorothiazide and losartan.

 

 

 

 

But I digress. So, it’s a good thing that this reader no longer needs her hydrochlorothiazide since she has no swelling and that her irbesartan has been reduced since her blood vessels are becoming more relaxed. Wait a minute. Why wouldn’t every CKD patient want these results? Ah, but I’ve left something out of the equation.

She’s gone GF or Gluten Free. Ready? Here is the definition of gluten from the Oxford Dictionary at https://en.oxforddictionaries.com/definition/GLUTEN “A mixture of two proteins present in cereal grains, especially wheat, which is responsible for the elastic texture of dough.” Oh, come on. There must be more to it than that. Let’s try gluten free instead of gluten. Oh, my! NephCure at https://nephcure.org/livingwithkidneydisease/diet-and-nutrition/gluten-free-diet/

has an entire page devoted to going gluten free. But I am getting ahead of myself here.

Let’s go back to gluten, this time sources. The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html  offers these lists:

What Foods Have Gluten?

Gluten is found in wheat, rye, barley and any foods made with these grains. Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients. These include but are not limited to:
White Flour
Whole Wheat Flour
Durum Wheat
Graham Flour
Triticale
Kamut
Semolina
Spelt
Wheat Germ
Wheat Bran

Common foods that are usually made with wheat include:
Pasta
Couscous
Bread
Flour Tortillas
Cookies
Cakes
Muffins
Pastries
Cereal
Crackers
Beer
Oats (see the section on oats below)
Gravy
Dressings
Sauces
This may seem like a long list, but there are still plenty of gluten-free foods out there! Choose from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts and gluten-free grains like quinoa or rice. There are also gluten-free versions of many of the foods above available in most grocery stores. You just have to look for them!

Gluten Surprises
You may not expect it, but the following foods can also contain gluten:
broth in soups and bouillon cubes
breadcrumbs and croutons
some candies
fried foods
imitation fish
some lunch meats and hot dogs
malt
matzo
modified food starch
seasoned chips and other seasoned snack foods
salad dressings
self-basting turkey
soy sauce
seasoned rice and pasta mixes
There are also many additives  and ingredients in packaged foods that may contain gluten. Always check labels and ingredient lists for these. For a more comprehensive list of gluten-containing additives, contact your local celiac support group.

Other Tips to Remember
Don’t forget that ingredients in food products change frequently, so always check the label before buying packaged foods. Remember that “wheat-free” does not automatically mean “gluten-free.” While a product may not contain wheat, it can still contain rye or barley in some form. If you have any question about whether a food contains gluten, contact the manufacturer directly.

The Fuss About Oats
Pure oats are a gluten-free food, but most commercially processed oats have been contaminated during the growing, harvesting or processing stages. In the past, many experts recommended completely avoiding oats  those on a gluten-free diet in addition to wheat, barley, and rye. Now, some oats are grown and processed separately, and can be labeled “gluten-free.”

I see an awful lot of the same foods to avoid on this list as I do on the renal diet. I wonder if that would make it easier to go gluten free if you decide to?

Phosphorous! Aha. We, as CKD patients, need to limit our phosphorous intake. Have you noticed that many of these foods are high phosphorous? Is it possible that the gluten free diet will help us with our renal diets? I’m not suggesting that you go gluten free and I’m not suggesting that you don’t. I am saying the idea is, well, intriguing.

Before I forget: SlowItDownCKD has been chosen as one of Healthline’s top kidney disease blogs for 2017. Second year in a row!!!!! AND I’ve lowered the price of all five of my digital kidney books to $2.99 to spread the awareness of CKD out there more effectively. Oh, yes, you can still get them for free on Kindle Unlimited.

Until next week,

Keep living your life!

 

 

The Other Side of the Coin

Here’s hoping everyone had a wonderful Father’s Day. During our relaxed celebration for Bear, I found myself ruminating about how many times we’ve celebrated this holiday for fathers no longer with us and how many more times  we would be able to celebrate it for the fathers who are. They are aging. Wait a minute, that means their kidneys are aging, too.

Yep, that meant a new blog topic. We already know that kidney function declines with age. According to the National Kidney Foundation at https://www.kidney.org/blog/ask-doctor/what-age-do-kidneys-decline-function, “The general ‘Rule of Thumb’ is that kidney function begins to decline at age 40 and declines at a rate of about 1% per year beyond age forty. Rates may differ in different individuals.” 40?

Well, what is a perfect kidney function score… if such exists? Back  to the NKF, although they call this a ‘normal’ not ‘perfect’ GFR, this time at https://www.kidney.org/atoz/content/gfr:

In adults, the normal GFR number is more than 90. GFR declines with age, even in people without kidney disease.
Average estimated GFR
20–29     116
30–39     107
40–49     99
50–59     93
60–69     85
70+         75

Got it. So even for a normal 70+ person, I have CKD with my 50ish GFR.

It seems I’m getting a bit ahead of myself here. I haven’t defined GFR yet. Let’s take a gander at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for that definition,

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

No, that won’t do. I think we need more of an explanation. This is from SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through  the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.”

Okay, I think that’s clear now. However, that’s not what I wanted to know. This is – if kidney function already declines with age, does having CKD age us more quickly?

Premature aging is a process associated with a progressive accumulation of deleterious changes over time, an impairment of physiologic functions, and an increase in the risk of disease and death. Regardless of genetic background, aging can be accelerated by the lifestyle choices and environmental conditions to which our genes are exposed. Chronic kidney disease is a common condition that promotes cellular senescence and premature aging through toxic alterations in the internal milieu. This occurs through several mechanisms, including DNA and mitochondria damage, increased reactive oxygen species generation, persistent inflammation, stem cell exhaustion, phosphate toxicity, decreased klotho expression, and telomere attrition….”

You can read the entire fascinating (to my way of thinking) American Journal of Kidney Disease article at http://www.natap.org/2013/HIV/PIIS0272638612015922.pdf.

Nature.com at http://www.nature.com/nrneph/journal/v10/n12/full/nrneph.2014.185.html seems to agree that CKD accelerates aging:

“Chronic kidney disease (CKD) shares many phenotypic similarities with other chronic diseases, including heart failure, chronic obstructive pulmonary disease, HIV infection and rheumatoid arthritis. The most apparent similarity is premature ageing, involving accelerated vascular disease and muscle wasting. We propose that in addition to a sedentary lifestyle and psychosocial and socioeconomic determinants, four major disease-induced mechanisms underlie premature ageing in CKD: an increase in allostatic load, activation of the ‘stress resistance response’, activation of age-promoting mechanisms and impairment of anti-ageing pathways. The most effective current interventions to modulate premature ageing—treatment of the underlying disease, optimal nutrition, correction of the internal environment and exercise training—reduce systemic inflammation and oxidative stress and induce muscle anabolism. Deeper mechanistic insight into the phenomena of premature ageing as well as early diagnosis of CKD might improve the application and efficacy of these interventions and provide novel leads to combat muscle wasting and vascular impairment in chronic diseases.”

Remember the friend of my daughter’s who hadn’t seen me in five years who (thought) he whispered to her, “Your mom got so old.” Now I understand why, although I have noticed this myself. I look in the mirror and see the bags under my eyes that are not errant eye liner. I see the lines in my faces, especially around my mouth, that weren’t there just a year ago. I see the stubborn fat around my middle that frustrates me no end. I see that it takes me forever (okay, so I’m being figurative here, folks) to recover from the flu, and I see how easily I become – and stay – tired. The dancer in me screams, “No fair!” The adult patient in me says, “Deal with it,” so I do.

I’ve used quite a bit of advanced terminology today, but haven’t explained a great deal of it in the hopes that when you read these articles their meanings will become clear in context. If they don’t, please leave me a comment and I will explore each one of them in future blogs. Who knows? Maybe I’ll need to devote an entire blog to whichever term it is you’d like to know more about.

Don’t let our premature aging get you down. We can work against it and, hopefully, slow it down just as we do with the progress of the decline in our kidney function.

I have been saving this bit of news for the last item in today’s blog. The world is not going to suffer if it doesn’t know about my photography, my teaching ,writing, or acting careers. But, when it comes to CKD, my writing can add something for those 31 million people who have it…especially the 90% that haven’t been diagnosed yet. What I did was completely change my web site so that it deals only with my Chronic Kidney Disease Awareness Advocacy (It’s all caps because that’s the way I think of it.) under the umbrella of SlowItDownCKD. I have to admit, I was surprised to see how active I’ve been in the last decade. It’s different when you see your work listed all in one place. Take a look at www.gail-raegarwood.com and tell me what you think, would you?

Until next week,

Keep living your life!

 

 

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

‘The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency.

As of September 13, 2011, according to Change 1 of this Instruction, the following was included.

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

  • All Veterans enrolled in VA are eligible for services, regardless of service connection status
  • Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
  • 49 VA health care facilities offer kidney disease specialty care (nephrology services)
  • 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
  • VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
  • 36 outpatient hemodialysis centers offer home dialysis care directly.
  • 5 VA medical centers host kidney transplantation programs.
  • VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
  • Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
  • VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

B.U.N. No, not bun. B.U.N.

Let’s consider this part 2 of last week’s blog since all these terms and tests and functions are intertwined for Chronic Kidney Disease patients. Thanks to reader Paul (not my Bear, but another Paul) for emphatically agreeing with me about this.

Bing! Bing! Bing! I know where to start. This is from The National Kidney Disease Education Program at the U.S. Department of Health and Human Services’ information about being tested for CKD.

“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.”

If you read last week’s blog about creatinine, you know there’s more to the testing than that and that more of the information is in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. No sense to repeat myself so soon.

Let’s take this very slowly. I don’t think it necessary to define blood, but urea? Maybe. I found this in SlowItDownCKD 2015:

“But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

‘Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly or that you are dehydrated (have low body water content).’

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well….”

You with me so far? If there’s suspicion of CKD, your nephrologist tests your serum creatinine (see last week’s blog) and your BUN.  Wait a minute; I haven’t explained nitrogen yet. Oh, I see; it has to be defined in conjunction with urea.

Thanks to The National Kidney Foundation at https://www.kidney.org/atoz/content/understanding-your-lab-values for clearing this up:

“Urea nitrogen is a normal waste product in your blood that comes from the breakdown of protein from the foods you eat and from your body metabolism. It is normally removed from your blood by your kidneys, but when kidney function slows down, the BUN level rises. BUN can also rise if you eat more protein, and it can fall if you eat less protein.”

So now the reason for this protein restriction I wrote about in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease should be clear.

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

This is starting to sound like a rabbit warren – one piece leads to another, which verves off to lead to another, and so forth and so on. All right, let’s keep going anyway.

Guess what. Urea is also tested via the urine. Nothing like confusing the issue, at least to those of us who are lay people like me. Let’s see if Healthline at http://www.healthline.com/health/urea-nitrogen-urine#overview1 can straighten this out for us.

“Your body creates ammonia when it breaks down protein from foods. Ammonia contains nitrogen, which mixes with other elements in your body, including carbon, hydrogen, and oxygen to form urea. Urea is a waste product that is excreted by the kidneys when you urinate.

The urine urea nitrogen test determines how much urea is in the urine to assess the amount of protein breakdown. The test can help determine how well the kidneys are functioning, and if your intake of protein is too high or low. Additionally, it can help diagnose whether you have a problem with protein digestion or absorption from the gut.”

Hmmm, these two don’t sound that different to me other than what is being analyzed for the result – blood (although blood serum is used, rather than whole blood) or urine.

What about BUN to Creatinine tests? How do they fit in here? After all, this is part 2 of last week’s blog about creatinine. Thank you to Medicine Net at http://www.medicinenet.com/creatinine_blood_test/article.htm for explaining. “The BUN-to-creatinine ratio generally provides more precise information about kidney function and its possible underlying cause compared with creatinine level alone.”

Dizzy yet? I think that’s enough for one day.

In other news, the price of all my Chronic Kidney Disease books has been reduced by 20%. I think more people will avail themselves of this information if they cost less… and that’s my aim: CKD awareness. If you belong to Kindle’s share program, you can take advantage of the fact that the price there was reduced to $1.99. You can also loan my books to a Kindle friend or borrow them from one for free for 14 days. Or you can ask your local librarian to order all five books, another way of reading them free. I almost forgot: as a member of Kindle Unlimited and the Kindle Owners’ Lending Library, you also read the books for free although you do need to pay your usual monthly subscription fee.

Students: Please be aware that some unscrupulous sites have been offering to rent you my books for a term for much more than it would cost to buy them. I’ve succeeded in getting most of them to stop this practice, but more keep popping up.

Until next week,

Keep living your life!

Recreating Creatinine

I throw a lot of terms around as if we all understood them. Sorry for that. One reader made it clear he needed more information about creatinine. In another part of my life, I belong to a community that calls reviewing or further explanation of a certain topic recreating… and today I’m going to recreate creatinine.

Let’s start in the beginning. This is what I wrote in the beginning of my CKD awareness advocacy in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease :

“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.”

Got it. Well, I did have to read it a couple of times to get it straight in my mind. Now what? Let’s see what more information I can find about what this means to a CKD patient. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 contains the following explanation from DaVita,

“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.”

I thought you might want to know more about this test, so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since I remembered including The National Kidney Disease Education Program at The U.S. Department of Health and Human Services’ information (including some reminders about definitions) concerning the process of being tested for CKD.

  1. “A blood test checks your GFR, which tells how well your kidneys are filtering.…

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

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.

Creatinine The creatinine blood test measures the level of creatinine in the blood. This test is done to see how well your kidneys work.

Urine:

Creatinine clearance – The creatinine clearance test helps provide information about how well the kidneys are working. The test compares the creatinine level in urine with the creatinine level in blood.”

Aha! So there are two different creatinine readings: blood or serum and urine. By the way, MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=5470 defines serum as “The clear liquid that can be separated from clotted blood. Serum differs from plasma, the liquid portion of normal unclotted blood containing the red and white cells and platelets. It is the clot that makes the difference between serum and plasma.”

This is starting to get pretty complex. It seems that yet another test for CKD can be conducted with a urine sample. This is from SlowItDown 2015.

“In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse, A service of the NIH, at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.”

Is there more to know about creatinine? Uh-oh, this savory little tidbit was reprinted in SlowItDownCKD 2016 from an earlier book.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

This seems to be calling for a Part 2. What do you think? There’s still BUN and albumin to deal with. Let me know what else you’d like to see included in that blog.

Have I mentioned that I’ll be presenting a display about CKD Awareness at Landmark’s Conference for Global Transformation? Or that both an article and an update about CKD Awareness will be included in their journal?

Until next week,

Keep living your life!

Getting a Little Too High

You know those blood and urine tests you take periodically?  Have you ever looked at your uric acid levels? It might be worth the effort. This is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Uric Acid levels in the blood can indicate that you’re at risk for gout, kidney stones, or kidney failure.  It’s the kidney’s job to filter uric acid from the body.  A buildup means the kidneys are not doing their job well.”

For the first time ever – and I’ve had Chronic Kidney Disease for nine years – my uric acid levels were high. Why now? What could this mean? I already know I have Chronic Kidney Disease. I haven’t had a kidney stone in nine years and was unaware of having that one until my nephrologist told me I did. Is it gout?

Time to back track. What is uric acid anyway?

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (Hang on; I’m working on simplifying that title.), I used the Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/uric%20acid for this definition:

“URIC ACID: a white odorless and tasteless nearly insoluble acid C5H4N4O3 that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {A little help here: this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout.”

Back to gout, in SlowItDownCKD 2016, I wrote a little bit about one of the causes of gout: purines in our diet.

“According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

‘Purines (specific chemical compounds found in some foods) are broken down into uric acid. A diet rich in purines from certain sources can raise uric acid levels in the body, which sometimes leads to gout. Meat and seafood may increase your risk of gout. Dairy products may lower your risk.’

It seems to me a small list of high purine foods is appropriate here. Gout Education at http://gouteducation.org/patient/gout-treatment/diet/ offers just that. This also appears to be an extremely helpful site for those wanting to know more about gout.

“Because uric acid is formed from the breakdown of purines, high-purine foods can trigger attacks. It is strongly encouraged to avoid:

  • Beer and grain liquors
  • Red meat, lamb and pork
  • Organ meats, such as liver, kidneys and sweetbreads
  • Seafood, especially shellfish, like shrimp, lobster, mussels, anchovies and sardines”

This doesn’t work for me. Except for shrimp which I’ll have two or three times a year, I don’t eat or drink any of this food.

Grrrrrr. Back to the drawing board. Let me see if I can find other causes of high uric acid levels. The Mayo Clinic at http://www.mayoclinic.org/symptoms/high-uric-acid-level/basics/causes/sym-20050607 had some other suggestions:

“Factors that may cause a high uric acid level in your blood include:

  • Diuretic medications (water pills)
  • Drinking too much alcohol
  • Genetics (inherited tendencies)
  • Hypothyroidism(underactive thyroid)
  • Immune-suppressing drugs
  • Niacin, or vitamin B-3
  • Obesity
  • Psoriasis
  • Purine-rich diet — liver, game meat, anchovies, sardines, gravy, dried beans and peas, mushrooms, and other foods
  • Renal insufficiency — inability of the kidneys to filter waste
  • Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers

Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.”

As far as I know, I don’t have an inherited tendency toward high uric acid levels. Nor do I have hypothyroidism, take immune-suppressing drugs, niacin, or vitamin B-3. We already know that I don’t drink alcohol or eat purine rich foods, and have CKD. I’ve never been treated for cancer, so what’s left?

Hmmm, I do take a diuretic, am obese, and have psoriasis. Wait a minute. I thought diuretics helped you reduce the amount of water and salt in your body. Now they may cause high uric acid? How? Drugs.com at https://www.drugs.com/health-guide/gout.html helped me out here:

“The kidneys do not excrete enough uric acid. This can be caused by kidney disease, starvation and alcohol use, especially binge drinking. This also can occur in people taking medications called diuretics (such as hydrochlorothiazide or furosemide).” Time to speak with my doctor about this prescription, I think.

My psoriasis is so latent that I often forget I have it. However, Arthritis.org at http://www.arthritis.org/about-arthritis/types/psoriatic-arthritis/articles/psoriatic-arthritis-increases-gout-risk.php tells us:

“In gout, uric acid builds up in the joints and tissue around the joints – often the big toe – and forms needle-like crystals, which can cause sudden episodes of intense pain and swelling. If left untreated, gout can become chronic and lead to joint damage. In psoriasis and psoriatic arthritis, uric acid is thought to be a byproduct of rapid skin cell turnover and systemic inflammation.”

That also explains what gout is, which I’d neglected to do. Something kept nagging at my memory (oh, to have a clear memory without the nagging for a change.) Got it. It was in SlowItDown 2016:

“Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association:

‘Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.’

Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

I’m beginning to see the pattern here. Well, what about the weight? I discovered this quote on The Arthritis Foundation’s Gout Blog at http://blog.arthritis.org/gout/weight-gout-risk/ :

“’Higher weight is associated with higher uric acid levels in the blood, which therefore increases gout risk,’ says Tuhina Neogi, MD, PhD, associate professor of medicine at Boston University School of Medicine.”

That strong connection between inflammation and weight leaves me speechless. It seems so transparent, yet I somehow manage to forget it repeatedly. Ugh!

Book news: In honor of my first born’s birthday, my miracle (I was considered a really old first time mother back then), my sun-up-in-the-sky (That’s the translation of her Tibetan name), all my kidney books will be reduced in price by 20%. as of May 6th. Go to Amazon.com and/or B&N.com and then thank Nima for the present.

Until next week,

Keep living your life.

The Helper Asks for Help

Imagine my surprise when I received an email from Deanna Power, Director of Outreach Disability Benefits Help at the Social Security Administration. My first thought: are they raising my monthly amount? But isn’t it the wrong time of year for an awards letter from them? And why would the email be from Disability anyway? Hmmm, so I did the logic thing; I opened the email and read it.

Look at this! Ms. Power wants me to help those on dialysis and those who have a transplant understand the application for SSA. While I don’t usually deal with either End Stage Chronic Kidney Disease or Transplantation, this struck me as worthwhile. Take note of the possibility of SSA for less advanced kidney disease, too. So, without further ado…

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If you have been diagnosed with kidney disease, you know that maintaining your career can be challenging due to your health needs and frequent doctor’s appointments. There might be financial assistance available for you.

The Social Security Administration (SSA) will compare any applicant with kidney disease to its own medical guide of qualifying conditions, the Blue Book (written for medical professionals), which outlines exactly what treatments or test results are needed to qualify. This is under Section 6.00 which outlines three separate listings for kidney disease. Meeting one is enough to medically qualify.

6.03: Chronic kidney disease with hemodialysis or peritoneal dialysis. Dialysis must be expected to last for a continuous period of at least one year. Disability benefits will be paid throughout your treatments. An acceptable medical source (blood work, physician’s notes, etc.) is needed to approve your claim. You also may meet a kidney disease listing before your first round of dialysis, so be sure to check listing 6.05 (below) if your doctor is considering dialysis.

6.04: Chronic kidney disease with transplant. You will automatically medically qualify for disability benefits for at least one year. After that the SSA will revaluate your claim to determine if you are still eligible for disability benefits.

6.05: Chronic kidney disease, with impairment of function. This is the most complicated listing. The Blue Book – which was written for medical professionals – is available online, so you should review it with your doctor to know if you’ll qualify. In simplified terms, the Blue Book states:

You must have one of the following lab findings documented on at least two occasions, 90 days apart, within the same year:

  • Serum creatinine of 4mg/dL or greater, OR
  • Creatinine clearance of 20 ml/min or less, OR
  • Estimated glomerular filtration rate of 20 ml/min/1.73m2 or less

Additionally, you must have one of the following:

  1. Renal osteodystrophy (bone disease caused by kidney failure) with severe bone pain  and acceptable imaging documenting bone abnormalities, such as osteitis fibrosa, osteomalacia, or bone fractures, OR
  2. Peripheral neuropathy, OR
  3. Anorexia with weight loss, determined with a BMI of 18.0 or less, calculated on at least two occasions at least 90 days apart within the same year, OR
  4. Fluid overload syndrome with one of the following:
  • High blood pressure of 110 Hg despite at least 90 days of taking prescribed medication. Blood pressure must be taken at least 90 days apart during the same year.
  • Signs of vascular congestion or anasarca (fluid build up) despite 90 straight days of prescribed medication. Again, the vascular congestion or anasarca must have been recorded at the hospital at least twice, three months apart, and all within the same year.

You may need additional tests to evaluate your kidney function to determine your eligibility.

The SSA has a special approval process called a “Medical Vocational Allowance” that helps people with less advanced kidney disease get financial assistance when your kidney disease prevents you from performing any work that you’re qualified for. The SSA will look at how your treatments prevent you from working, and then compare your restrictions to your age, education, and work history.

Older applicants have an easier time qualifying this way, as the SSA believes they’ll have a harder time getting retrained for a new job. If you don’t have a college degree, you’ll also have an easier time getting approved, as people with college degrees often have a variety of skills that can be used at sedentary jobs. The more physical your past jobs, the better your chances of approval.

A Medical Vocational Allowance relies heavily on the findings from the Residual Functional Capacity (RFC) evaluation. An RFC documents how much you can stay seated or on your feet, how much weight you can lift, your ability to stoop and walk, and more. You can download an RFC online for your doctor to fill out on your behalf.

The majority of applicants can complete the entire process online. This is the easiest way to apply as you can save your progress to complete your application later. If you’d prefer to apply in person, call the SSA at 1-800-772-1213 to schedule an appointment at your closest Social Security office. There are at least four locations in every state.

The most important components of your application will be your thoroughness and attention to detail. Fill out every question on the application. Describe how your kidney disease impacts your ability to work specifically, or how it keeps you from performing daily tasks as you used to. Any complications or side effects from your treatments and medications need to be recorded as well.

The SSA will not require you to submit your medical records yourself, but you do need to list every hospital where you’ve received treatment. If the SSA can’t find evidence documenting your kidney disease, you won’t be approved.

It takes an average of five months to be approved. That’s when your benefits start. You will be eligible for Medicare 24 months after “the onset of your disability,” which is typically the point at which your kidney disease stopped you from working. If your kidney disease is end stage, your waiting period will be waived.

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Many thanks to Ms. Power for suggesting I pass on this information. Please use the links, file your papers, and make life a bit easier for yourself if you fit into any of these designations. It’s all about helping each other after all, isn’t it?

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

The CDC also offers advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

I’m Wearing Out

I’ll hold off the Cuba blog for another week because something else seems more relevant right now. I was thinking about last week’s blog and what my friend’s surgeon told her about slow bone healing when you have Chronic Kidney Disease. Some vague memory was nagging me.  And then I got it. Yay for those times we conquer mind fog.

fluRemember I’d had the flu that morphed into a secondary infection recently? My breathing was so wheezy and I was feeling so poorly that I went back to immediate care a second time just ten days after the first time I’d been there.

What is immediate care you ask? That’s a good question. Let’s allow HonorHealth at https://www.honorhealth.com/medical-services/immediate-care-urgent-care to answer.

“If you need medical care quickly for a non-life-threating illness or injury.… Patients of all ages can walk into any one of the four HonorHealth Medical Group immediate care centers, with no appointment needed, for such ailments and injuries as lacerations, back pain, cough, headache, or sinus or urinary tract infections.

…advantages:

  • Your co-pay is lower with immediate care compared to urgent care.
  • All four Valley locations are within offices of HonorHealth primary care physicians. That means any follow-up care you might need will be easy to access.
  • Your medical records, including labs and radiology images, soon will be linked systemwide with other HonorHealth facilities. So if you find yourself in an HonorHealth hospital or at an HonorHealth specialist, your medical information will be easily accessible by trusted caregivers. In addition, you won’t need to provide the same information over and over again; it will be in your medical record.”

It’s also clean, well equipped, and the wait is never too long. That’s where I go when I can’t get an appointment with my primary care doctor. There may be a different immediate care facility in your area.

Back to the bone issue. While I was there, an x-ray of my chest was ordered to check for pneumonia. I’m lucky: there wasn’t any. But, there was the unfolding of the thoraxthoracic aorta which I blogged about, and there was “levoconvex curvature and degenerative spurring of the thoracic spine.”

I am way past the point of panicking when I encounter a medical term I don’t know in a report about my body, but I am still curious… very curious. As I wrote in the blog about the unfolding aorta:

IMG_2982“…. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax. … ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax. Thoracic is the adjective form of thorax.” Adjectives describe the noun – the person, place, thing, or idea.

And degenerative? There’s a poignant discovery about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “Ah, CKD is a degenerative disease.”  Well, all right then. Both CKD and the spurring of my thoracic spine are degenerative. What exactly does degenerative mean, though? My all-time favorite Merriam-Webster Dictionary tells us it’s the adjective (yep, that means describing) form of degeneration. Their definition of degeneration at https://www.merriam- webster.com/dictionary/degeneration is “deterioration of a tissue or an organ in which its function is diminished or its FullSizeRender (2)structure is impaired.” This doesn’t sound too great; it sounds like CKD.

What about “levoconvex curvature”? I understand curvature and I’m sure you do, too, so let’s just deal with levoconvex. I see convex in the word and know that means curving outward. Levo is new to me. GLOBALRPh at http://www.globalrph.com/medterm6b.htm, which defines itself as The Clinician’s Ultimate Reference, tells us this simply means left. Now how did I miss that when I studied Greek and Latin all those years ago?  Looks like my spine curves outward to the left. I couldn’t find any relationship between this and CKD except that it may cause kidney pain if the curvature is severe enough.

FullSizeRender (3)Sure enough, there is a connection between CKD and the spurring of my thoracic spine and it’s degeneration. But wait. I forget to explain spurring. This is how it was explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“…bone spur.  A what?  Oh, an osteophyte!  Osteo comes from the Latin osseusosossis meaning bone and the Greek osteon, also meaning bone. {Thank you for the memory, Hunter College of the City University of New York course in Greek and Latin roots taken a zillion years ago.}”

Funny how the memory works sometimes and others it doesn’t. I can just see one of my kids rolling her eyes and saying, “So?”

So, it means that there is extra bone growing on my poor thoracic spine as part of the degeneration of my body. Even though it’s my body I’m writing about, I find it amusing that bone is growing rather than diminishing as part of the degeneration. It seems backwards to me.

However, there you have it: chronic kidney disease is a degenerative disease.  The spurring of the thoracic spine is also degenerative. Since I just turned 70, I’m not surprised about the spine thing. Keep in mind that CKD can hit at any age.

You knew it. This is turning into a plea to get tested for CKD. Here’s a bit of information from the National Kidney Foundation of Arizona at NKF-logo_Hori_OBhttps://azkidney.org/path-wellness that can help with that:

“Path to Wellness screenings provide free blood and urine testing, which is evaluated onsite is using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills. For more information, click the link above or call our main line at: (602) 840-1644.”

IMG_2980

Until next week,

Keep living your life!

The Three Musketeers

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

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

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

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

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

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

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

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

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

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

FullSizeRender (3)

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

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

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

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

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

“Vitamin D is responsible for:

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

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

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

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

“Calcium

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

Vitamin D

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

Phosphorusfish

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

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

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

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

Until next week,

Keep living your life!

 

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

mlk-do-for-others

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

stages of CKDWe also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is 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 image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that 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. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.IMG_2979

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; and SlowItDownCKD 2015 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.badge_kidney-disease-1

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

friendsWhat about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people NKF-logo_Hori_OBwith kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge AKF logodifference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Where Does It All Come From?

KwanzaaFor the past two weeks, I’ve had the flu. I’ve missed the Chanukah Gathering at my own house, Kwanzaa, and New Year’s. I even missed my neighbor’s husband/son birthday party and a seminar I enjoy attending.

Before you ask, yes I did have a flu shot. However, Strain A seems to be somewhat resistant to that. True, I have been able to cut down on the severity of the flu by taking the shot, but it leaves me with a burning question: How can anyone produce as much mucus as I have in the last two weeks?

Mucus. Snot. Sputum. Secretion. Phlegm. Whatever you call it, what is it and how is it produced? According to The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/mucus, it’s “the free slime of the mucous membranes, composed of secretion of the glands, various salts, desquamated cells, and leukocytes.” By the way, spelling it mucous makes it an adjective, a word that describes a noun. Mucus is the noun, the thing itself.

Let’s go back to that definition for a minute. We know from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease that “Leukocytes are FullSizeRender (2)one of the white blood cells that fight bacterial infection.” Interesting, the flu as bacterial infection.

Yep, I looked it up and found this on WebMd at http://www.webmd.com/cold-and-flu/tc/flu-signs-of-bacterial-infection-topic-overview: “A bacterial infection may develop following infection with viral influenza.” Oh, so that’s what all the mucus is about. There’s quite a bit more information on this site, but I’m having a hard enough time sticking to my topic as it is.

I still wanted to know how mucus (without the ‘o’) was produced.

Many thanks to Virtual Medical Centre at http://www.myvmc.com/medical-centres/lungs-breathing/anatomy-and-physiology-of-the-nasal-cavity-inner-nose-and-mucosa/ for their help in explaining the following:

The nasal cavity refers to the interior of the nose, or the structure which opens exteriorly at the nostrils. It is the entry point for inspired air and the first of a series of structures which form the respiratory system. The cavity is entirely lined by the nasal mucosa, one of the anatomical structures (others include skin, body anim_nasal_cavityencasements like the skull and non-nasal mucosa such as those of the vagina and bowel) which form the physical barriers of the body’s immune system. These barriers provide mechanical protection from the invasion of infectious and allergenic pathogens.

By now you’re probably questioning what this has to do with Chronic Kidney Disease. I found this on a site with the unlikely name Straightdope at http://www.straightdope.com/columns/read/1246/how-does-my-nose-produce-so-much-snot-so-fast-when-i-have-a-cold :

“The reason you have a seemingly inexhaustible supply of mucus when suffering from a cold is that the mucus-producing cells lining your nasal cavity extract the stuff mostly from your blood, of which needless to say you have a vast supply. The blood transports the raw materials (largely water) from other parts of the body. Fluid from your blood diffuses through the capillary walls and into the cells and moments later winds up in your handkerchief. (This process isn’t unique to mucus; blood is the highway for most of your bodily fluids.)”

While this is not the most scholarly site I’ve quoted, it offers a simple explanation. Blood. Think about that. I turned to The Book of Blogs: Moderate Stage IMG_2982Chronic Kidney Disease, Part 1 for help with my explanation.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.  I haven’t even mentioned their minor ones.”

Get it? Kidneys filter the blood. Our kidneys are not doing such a great job of filtering our blood since we have CKD, which means we also have compromised immune systems. Thank you for that little gift, CKD. (She wrote sarcastically.)

Now you have the flu. Now what? Here are some hints taken from Dr. Leslie Spry’s  ‘Flu Season and Your Kidneys’  reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. Dr. Spry is an active member of the Public Policy Committee at the National Kidney Foundation, and, I am honored to FullSizeRender (3)say, a follower on Twitter.

You should get plenty of rest and avoid other individuals who are ill, in order to limit the spread of the disease. If you are ill, stay home and rest. You should drink plenty of fluids …to stay well hydrated. You should eat a balanced diet. If you have gastrointestinal illness including nausea, vomiting or diarrhea, you should contact your physician. Immodium® is generally safe to take to control diarrhea. If you become constipated, medications that contain polyethylene glycol, such as Miralax® and Glycolax® are safe to take. You should avoid laxatives that contain magnesium and phosphates. Gastrointestinal illness can lead to dehydration or may keep you from taking your proper medication. If you are on a diuretic, it may not be a good idea to keep taking that diuretic if you are unable to keep liquids down or if you are experiencing diarrhea. You should monitor your temperature and blood pressure carefully and report concerns to your physician. Any medication you take should be reported to your physician…

National Kidney MonthCheck the National Kidney Foundation itself for even more advice in addition to some suggestions as to how to avoid the flu in the first place.

Every year I decide not to write about the flu again. Every year I do. I think I’m oh-so-careful about my health, yet I end up with the flu every year. Sometimes I wonder if these blogs are for you…or reminders for me. Either way, I’m hoping you’re able to avoid the flu and keep yourself healthy. That would be another kind of miracle, wouldn’t it?IMG_2980

Until next week,

Keep living your life.

Cleaning Out

Today I gimg_3613et to finish the final edits for my novel Portal in Time and submit it to my publisher. That means the next step is cleaning out my files and my computer. Writers accumulate an awful lot of unnecessary material when researching for a book.

That simple thought got me to thinking about another kind of cleaning out, the body kind. By the way, it seems the words cleanse and detox – short for detoxification – are being used interchangeably. Whichever term we use, are they safe for us as Chronic Kidney Disease patients?

But first – there’s always a first, isn’t there? – a warning: if you’re thinking of doing one for weight loss, don’t. According to Medicine.Net at http://www.medicinenet.com/cleansing_and_detox_diets/article.htm,

“There is no scientific evidence that “detox” (short for detoxification) or “cleanse” diets result in rapid weight loss or have any health benefits, says Heather Mangieri, RDN, LDN, a spokeswoman for the Academy of Nutrition and Dietetics and founder of NutritionCheckUp in Pittsburgh.

Indeed, the opposite may be true: One study published in 2011 in the journal Obesity found that beginning a weight-loss diet with a fast or cleanse could be counterproductive.”IMG_2980

Now wait just a minute, if they provide no ‘rapid weight loss or have any health benefits,’ why do people go to the trouble of doing them? I wrote about this just a bit in relation to brain fog in SlowItDownCKD 2015.

“…with CKD I’d talk over detoxing and/or taking supplements to support cell power with my nephrologist before actually following that advice.  Some nephrologists are dead (Yikes! Wrong word choice) set against detoxifying while others have a more eclectic approach to gentle detoxifying.”

Ah, so there MAY be some benefits in relation to brain fog. What’s brain fog again? The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (I have got to get around to shortening that title.) can help us out here.

“According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog

FullSizeRender (3)‘…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.’

You can read more at http://www.rodalenews.com/brain-fog.”

Well, what exactly is a detox?  The Free Dictionary’s medical dictionary at http://medical-dictionary.thefreedictionary.com/detoxification offers this as one of its definitions:

“A short-term health regimen involving procedures thought to remove toxins from the body, such as drinking large amounts of liquid, eating a restricted diet or fasting, taking nutritional supplements, and undergoing enemas.”

Now we get to the meat of the matter. Why do Chronic Kidney Disease patients need to be so careful about cleanses? I looked at the ingredient list of several different cleanses on Amazon.com.  (Click on the ingredient lists to make them larger so you can read them more carefully.) The first product was Super Colon Cleanse. One of the first ingredients was Psyllium Husk Powder 1 g. Uh-oh. Not good for us. As Metamucil Advisor – the manufacturer of fiber products -at http://www.metamuciladvisor.com/avoid-psyllium-and-metamucil-in-kidney-disease/ explains,

“Psyllium husk is a natural fiber that comes from the plant called Plantago Ovata. Plantago Ovata produces thousands of seeds that are coated with cleansea gel like substance that is extracted to create psyllium husk. The psyllium husk is a natural soluble fiber laxative that can be consumed to add bulk to the feces. Consuming psyllium powder will draw water to the stool making it easier to have a bowl movement. Psyllium husk is recommended to not be taken by individuals who have kidney disease because it is high in magnesium that individuals with chronic kidney disease must avoid. It is highly recommended to consult your physician before starting any product of psyllium husk to make sure it is safe with any health conditions you might have.”

dr-tobiasWell, that’s only one cleanse.  Let’s take a look at another. Dr. Tobias Colon: 14 Day Quick Cleanse is composed of herbs, no psyllium. But there’s a problem there, too.  As Chronic Kidney Disease patients we are cautioned against taking herbs, not so much because they will cause damage, but because we don’t know how much of each is safe for our kidneys.

I thought I remembered writing about this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease  – another really long title – and decided to find that information. Here it is:FullSizeRender (2)

“While none of this is established, the following might be toxic to the kidneys -wormwood, periwinkle, sassafras (I remember drinking sassafras tea as a child.  Did that have any effect on my kidneys?) and horse chestnut just to name a few. Then there are the herbal supplements that might be harmful to CKD patients: alfalfa, aloe, bayberry, capsicum, dandelion, ginger, ginseng, licorice, rhubarb and senna.  There are others, but they seemed too esoteric to include….”

They say three is the magic number, so let’s take another look. This time as something label ‘detox.’  Baetea 14 Day Teatox is the one I chose. I think I liked the play on words: detox, teatox, a tea to detox. Lots of herbs, but then I looked at the last ingredient – Garcinia Cambogia. That rang a caution bell in my mind so I went right to a site about the side effects of this product at http://garciniacambogiatopic.com/side-effects-garcinia-cambogia/.

“Our kidneys and liver remove toxins, waste and other substances from our body.  They are the main organs designed to clean the body of detox-teaimpurities.   People who already have diseases of the kidneys or liver should not take Garcinia Cambogia because their bodies might not be able to utilize and remove the supplement effectively.”

*sigh* It looks like we’ll just have to detox the old fashioned way, with increased fiber, as much water as your nephrologist permits, and exercise. You might consider going meat and sugarless, too. Of course, it wouldn’t hurt to cut down on carbs, either. It looks like we, as Chronic Kidney Disease patients, are moving closer and closer to clean eating.

Until next week,

Keep living your life!IMG_2982

How Sweet She Is

For 12 years, sweet Ms. Bella has positioned herself just inside my office door as I wrote, researched, edited, and formatted. For 12 years, sweet Ms. img_3326Bella has greeted me as effusively when I returned from a trip to the mailbox as she did when I returned from a trip to Alaska. For 12 years, sweet Ms. Bella has shared one sided conversations with me about any and everything. For 12 years, sweet Ms. Bella has adored me as no other being on earth ever has.

I’ll miss that. Sweet Ms. Bella crossed what I’m told is called The Rainbow Bridge this morning. .. and it was my decision. I’ve known for months that she had lymphedema. First we tried this. Then we tried that. And finally there was nothing else left to try. I am oh-so-sad without my boon companion, but it was time. She knew it and I knew it. May your soul come back to me, my sweet Ms. Bella.

I’ve been sad for a while knowing that I would have to make this decision and wondering how I would know when she’d had enough. I watched…and watched…and watched, yet she made it perfectly clear when her legs wouldn’t hold her up anymore and her cancerous lymph nodes started to impede her eating. She is at rest now.

What have I done to my kidneys with all this sadness, I wondered. I don’t know via my lab reports because I was just tested last Thursday and Urine_sampledidn’t know about sweet Ms. Bella’s cancer when my blood and urine were tested three months ago. So I did what I could to find out: I researched.

I found this on the National Kidney Foundation’s site at https://www.kidney.org/news/newsroom/nr/depression-kd:

New York, NY (July 1, 2012) – People with kidney disease who have symptoms of depression may be on the fast track to dialysis, hospitalization or death, according to a new study published in the July issue of the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation.”

But I’m not depressed; I’m sad.  Well, what’s the difference? I turned to my old buddy WebMD for some help here:

“….Also known as clinical depression, major depressive disorder, or unipolar depression, major depression is a medical condition that goes beyond life’s ordinary ups and downs. Almost 18.8 million American adults experience depression each year, and women are nearly twice as likely as men to develop major depression. People with depression cannot simply ‘pull themselves together’ and get better. Treatment with counseling, medication, or both is key to recovery.”

Since I’m one of those people who always manage to get myself back together – and fairly quickly – I’d say I’m not depressed. I do suggest you read more about depression at http://www.webmd.com/depression/is-it-depression-or-the-blues if this strikes a chord with you.

So let’s go back to sadness and the kidneys. This is from a 5/21/14 article on a site that’s new to me: Medical Daily at http://www.medicaldaily.com/can-powerful-emotions-kill-you-negative-health-effects-anger-stress-sadness-and-shock-283682:

heart attack” ‘It’s called heartbreak for a reason. When you’re experiencing deep grief or sadness, it takes a toll on your health, too. One study from St. George’s University of London found that it is actually possible to die of a broken heart — bereavement increases your risk of a heart attack or stroke by nearly double after a partner’s death, the researchers discovered. We often use the term a ‘broken heart’ to signify the pain of losing a loved one and our study shows that bereavement can have a direct effect on the health of the heart,’ Dr. Sunil Shah, senior lecturer in public health at St. George’s, said in a press release.”

There’s a firm connection between heart health and kidney health. This is from SlowItDownCKD 2015:

“We’re used to reading about anemia and high blood pressure as the connection between CKD and Heart Disease, but here are two other causes.

DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and- diagnosis/ chronic-kidney-disease-and-your-heart/e/4730 once again jumps in to educate us:

‘High homocysteine levels: Damaged kidneys cannot remove extra homocysteine, an amino acid in the blood. High levels of homocysteine can lead to coronary artery disease, stroke and heart attack.IMG_2980

Calcium-phosphate levels: Damaged kidneys cannot keep calcium and phosphorus levels in balance. Often, there’s too much phosphorus and calcium in the blood. When this happens, there’s a risk for coronary artery disease.’”

Hmmm, just by having Chronic Kidney Disease, we run the risk of heart problems.  Now sadness – maybe ‘deep grief’ is a more apt description – may add to that risk. As much as I love sweet Ms. Bella and will miss her, I can’t honestly say this is true for me. It feels like there’s a big difference between deep grief and sadness.

Just to make certain the difference between depression and sadness is clear, I’m repeating this information from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Make The Connection, a veterans’ support site tells us

‘Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may FullSizeRender (3)find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

It doesn’t look like my short term sadness is worsening my kidneys in any way, but if you’re not sure whether you need help with yours, or if it is truly depression, seek help. It can’t hurt to be careful.

FullSizeRender (2)

I’m certain sweet Ms. Bella is not suffering anymore and that is already doing wonders for my peace of mind… and my sadness.

Until next week,

Keep living your life!

Feeling the Pressure

labor dayFor those of you in the United States, here’s hoping you have a healthy, safe Labor Day.  I come from a Union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant.

I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

Now that’s pressure, but I want to write about another kind of pressure today: your blood pressure.Mahomeds Sphygmograph

Being one of those people who is required to check their blood pressure at least once a day, I was surprised to learn that doctors didn’t realize the importance of maintaining moderate blood pressure until the 1950s. Yet, ancient Chinese, Greeks, and Egyptians knew about the pulse. I wonder what they thought that was.

The American Heart Association explains the difference between the blood pressure and the pulse, and offers a chart to exemplify. The column without the heading refers to ‘Heart Rate.’

Blood Pressure
What is it? The force the heart exerts against the walls of arteries as it pumps the blood out to the body The number of times your heart beats per minute
What is the unit of measurement? mm Hg (millimeters of mercury) BPMs (beats per minute)
What do the numbers represent? Includes two measurements:
Systolic pressure
(top number):
 The pressure as the heart beats and forces blood into the arteries
Diastolic pressure
(bottom number):
 The pressure as the heart relaxes between beats
Includes a single number representing the number of heart beats per minute
Sample reading 120/80 mm Hg 60 BPM

You can read more about this at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Blood-Pressure-vs-Heart-Rate_UCM_301804_Article.jsp.

bp cuffAccording to Withings, a French company that sells blood pressure monitoring equipment, at http://blog.withings.com/2014/05/21/the-history-of-blood-pressure/:

“The first study on blood circulation was published in 1628 by William Harvey – an English physician. He came to the conclusion that the heart acts as a pump. At that point it wasn’t clear that blood circulated, but after a little calculation he was pretty sure that blood is not ‘consumed’ by the organs. The physician then concluded that blood must be going though (sic) a cycle.”

Ah, but did his measurement include both numbers? In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I satisfied my own curiosity as to why our blood pressure readings always have two numbers, one atop the other:What is it

“The first number… called the systolic is the rate at which the heart contracts, while the second or diastolic … is when the heart is at rest between contractions.  These numbers measure the units of millimeters of mercury to which your heart has raised the mercy.”

Uh, raised the mercury of what? Well it’s not the sphygmomanometer as we now know it. By the way, this is the connection between blood pressure and Chronic Kidney Disease that I mentioned in SlowItDownCKD 2015:

“I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to proveIMG_2980 that theory since the first practical sphygmomanometer (Me here: That’s the device that measures your blood pressure.)  wasn’t yet available.”

Well, why is hypertension – high blood pressure – important in taking care of your kidneys anyway?  It’s the second leading cause of CKD. The Mayo Clinic succinctly explains why at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20045868

“Your kidneys filter excess fluid and waste from your blood — a process that depends on healthy blood vessels. High blood pressure can injure both the blood vessels in and leading to your kidneys, causing several types of kidney disease (nephropathy). “

Well, how do you avoid it then? One way is to take the pressure off yourself. (As a writer, I’m thoroughly enjoying that this kind of pressure can affect the other kind – the blood pressure. As a CKD patient, I’m not.)

Pressure on yourself is usually considered stress. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, there’s an explanation of what stress does to your body.

FullSizeRender (3)“…we respond the same way whether the stress is positive or negative…. First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {High blood sugar} and hypertension {High blood pressure} both play a part in Chronic Kidney Disease. If you still haven’t resolved the stress, additional hormones are secreted for more energy.”

What else? This list from the American Kidney Fund was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:IMG_2982

  • Eat a diet low in salt and fat
  • Be physically active
  • Keep a healthy weight
  • Control your cholesterol
  • Take medicines as directed
  • Limit alcohol
  • Avoid tobacco

AKF logo Why am I not surprised at how much this looks like the list for healthy kidneys?

I was just thinking: what better day to start working on this list than Labor Day?

Until next week,

Keep living your life!

 

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and younutrition can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

David White“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to herNutrition home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

kidney function“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, What is itand phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will IMG_2982order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney FullSizeRender (3)Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.IMG_2980

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.    friends

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

sad faceI have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  FullSizeRender (2)

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

FullSizeRender (3)What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:IMG_2980

“Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita:

“Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The IMG_2982CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

Until next week,

Keep living your life!

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Knowing End Stage Renal Disease is not my area of expertise, I took a peek at 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/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

Hair Today, Gone Tomorrow (Heaven Forbid)

I have noticed my hair coming out in alarming amounts when I wash it in the shower. At first, I thought, “I don’t brush it so this must be the way I shed dead hairs.”  Sure, Gail, keep telling yourself that. I have always had a glorious mane. No more. You can see more and more of my scalp with each shower. OMG! (Forgive the cigarettes in the modeling shot. It was a long, long time ago.)IMG_2944early shots

I’ve read pleas for help from Chronic Kidney Disease patients about just this issue…but they were dialysis patients. I’m Stage 3, more often with a GFR in the low 50s rather than the low 30s. Could it be my Chronic Kidney Disease causing the hair loss – I’ll feel better if we called it ‘hair thinning’ – or simply my almost seventy decades on Earth?

FullSizeRender (2)I can appreciate those of you asking, “Her what is in the low 50s?” Let’s take a peek at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a definition of GFR.

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

Of course, now you want to know, and rightfully so, what those numbers mean. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I included a helpful chart from DaVita along with some of my own comments which explains.

“Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:FullSizeRender (3)

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

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

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

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

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

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

GFR

As for the hair itself, I wondered what it’s made of so I started googling and came up with Hilda Sustaita, Department Chair of Cosmetology at Houston Community College – Northwest’s, definition. You can read more of her insights about hair at http://www.texascollaborative.org/hildasustaita/module%20files/topic3.htm

“Hair is made of protein which originates in the hair follicle.  As the cells mature, they fill up with a fibrous protein called keratin. These cells lose their nucleus and die as they travel up the hair follicle. Approximately 91 percent of the hair is protein made up of long chains of amino acids.”

keratinUh-oh, Chronic Kidney Disease patients need to lower their protein intake. I’m constantly talking about my five ounce daily limitation. I remembered quoting something about protein limitation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and so looked for that quote. This is what I found.

“This is part of an article from one of DaVita’s sites.  You can read the entire article at http://www.yourkidneys.com/kidney-IMG_2982education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189. …

Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. … The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

But I have friends near my age without CKD whose hair is thinning, too. They’re not on protein restricted diets, so what’s causing their hair thinning?

According to WebMD at http://www.webmd.com/beauty/aging/does-your-hair-make-you-look-old,

“’The diameter of the hair shaft diminishes as we get older,’ explains Zoe Draelos, M.D., clinical associate professor of dermatology at Wake Forest hair follicleUniversity School of Medicine. That means you may have the same number of follicles, but thinner individual strands will make it look like there’s less volume. (They’re also more prone to break, and since hair growth slows as you age, the damage becomes more obvious.)

Even if you do see extra hairs in your brush or in the shower drain, you don’t necessarily need to worry. Although 40 percent of women experience hairsome hair loss by menopause, shedding around 100 strands a day is normal, reports Paul M. Friedman, M.D., clinical assistant professor of dermatology at the University of Texas Medical School at Houston.”

So it may be my CKD that’s causing the hair thinning or it may not. Either way, I wanted to know what to do about it. Dr. Doris Day (I kid you not.) has other suggestions than protein as she discusses in a New York Times article at http://www.nytimes.com/2014/01/23/fashion/Hair-Aging-thinning-dry-dull.html.

Dr. Doris Day, a dermatologist in New York, agreed that the right foods are necessary for healthy hair.

‘I believe that inflammation is negative for the hair follicle, that it can accelerate stress shedding and compromise growth,’ she said. She suggests eating pomegranate, avocado, pumpkin and olive oil, and herbs like turmeric, mint and rosemary.”

You do remember that CKD is an inflammatory disease, right? Hmmm, better check with your renal nutritionist before you start eating pomegranates or pumpkin. They’re on my NO! list, but yours may be different from mine.IMG_2980

By the way, I’ve noticed there are no reviews for SlowItDownCKD 2015 on either Amazon.com or B&N.com. Can you help a writer out here? Just click on either site name to leave a review. Thanks.

Until next week,

Keep living your life!

The American Kidney Fund Blog

AKF logoI was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet,stages of CKD exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

I saw a renal dietician who explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out bananawent my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to blues dancersget a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. I ended up happily retiring from both acting and teaching at a local college, giving me more time to work on my CKD awareness advocacy.

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

What is itEach time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools can help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

What’s Your Type?

Every Sunday night, I take a blues dance lesson taught by my daughter, Abby Wegerski, as Sustainable Blues Phoenix at Saint Nick’s Tavern and SlowItDownCKD 2015 Book Cover (76x113)stay to dance to the music of the live band – the Rockets 88s – for a while. Last week, my good buddy, Karla Lodge, organized a fund raiser. I like to support Karla in whatever she does, so I decided to push myself and go to the fundraiser (a half hour drive each way) after dancing.

To make it even more fun, Bill Weber, the creator of Avery’s World, was in from Los Angeles visiting a relative in Tucson. They drove up to Scottsdale to join us at the fundraiser.  Now that you’ve been introduced to some of the people and events in my life, forget them. Here’s the important part: as we were having dinner, my Chronic Kidney Disease Awareness Advocacy came up. Bill’s relative lit up. It turns out Avery's Worldsomeone very close to her is a transplantee. Her first question to me: What’s your blood type?

I explained I was in the moderate stages of CKD and not anywhere near transplant, but she insisted it was very important to know your blood type when you have CKD. She didn’t know why. I didn’t know why…so that’s the subject of today’s blog.

Here I am starting in the middle again. We all have a blood type.  That’s fairly common knowledge, but what exactly are blood drawblood types? We’ll go about this a bit differently by defining blood group, which is a synonym for blood type. To paraphrase a song we used to sing during the two times I went to a two week stint at summer camp on a farm, “I know because the dictionary tells me so.” In this case it’s the Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/blood%20group:

“one of the classes (as those designated A, B, AB, or O) into which individuals or their blood can be separated on the basis of the presence or absence of specific antigens in the blood —called also blood type

What is itFor those of you who are wondering, an antigen is something that’s introduced to the body and causes the body to produce antibodies (think germs). As an undergraduate in good old Hunter College of The City University of New York I learned that ‘anti’ is a prefix meaning against. ‘Gen’ is a root which means causing something to happen.  Got it. An antigen causes something to happen against something else. In this case, your red blood cells.

4I see a hand raised in the back of the room. (This does remind me of when I was teaching college out here in Arizona.) Why are there four types you ask? Good question. Anyone have the answer? I don’t either, so let’s look it up together. Look! The Smithsonian Institute sums it up in one sentence: “But why humans and apes have these blood types is still a scientific mystery.” Now I don’t feel so uninformed that I couldn’t answer the question. Anyway, you can read more at: http://www.smithsonianmag.com/science-nature/the-mystery-of-human-blood-types-86993838/#JwJKP357AyhDRy4R.99 and, yes, this is THAT Smithsonian Institute.  Where, oh where, is Bones when you need her?Bones-tv-show-f38

Did you know there are numerous other blood groups, too? Usually people don’t – unless they happen to be a member of one of them. The same link above can offer you more information about these since we’ll be sticking to the four major ones today. You should know that your blood type is inherited.

Again, why is it important to know your blood group?  Thank you to Disabled World at http://www.disabled-world.com/calculators-charts/blood-chart.php for the following chart, which demonstrates the answer.

blood-donor-match

They also offer a simple explanation of why blood groups are so important:

“Blood types are very important when a blood transfusion is necessary. In a blood transfusion, a patient must receive a blood type compatible with his or her own blood type. If the blood types are not compatible, red blood cells will clump together, making clots that can block blood vessels and cause death.

blood_test_vials_QAIf two different blood types are mixed together, the blood cells may begin to clump together in the blood vessels, causing a potentially fatal situation. Therefore, it is important that blood types be matched before blood transfusions take place. In an emergency, type O blood can be given because it is most likely to be accepted by all blood types. However, there is still a risk involved.”

As a CKD patient for the last nine years, I have never needed a blood transfusion. Come to think of it, I’ve never needed one in my almost 70 years on this planet. But that’s not to say I may not need one sometime in the future… or that you might not need one. But I’m interested in why it’s especially important to know your blood type as a moderate stage CKD patient.

I scoured What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease – Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease – Part 2, and SlowItDownCKD 2015. Although there is abundant discussion of how the kidneys filter the blood, why their effectiveness in this filtering diminishes in CKD and the production of red blood cells, there is no mention of blood type in any of the books.

IMG_1398

I’m beginning to wonder if Bill’s relative meant that knowing your blood type is important in general, not especially if you have CKD. Karla, a Physician’s Assistant, was strangely quiet during this part of the discussion. I attributed that to her being pre-occupied with the fundraiser she was running… maybe that wasn’t the reason.

questionAlthough I didn’t find the answer to my question, I did run across some intriguing theories during my research. I’m not endorsing them since I know so little about them, simply offering you the information.

The Blood Type Diet at http://www.dadamo.com/ (I do remember a colleague being interested in this one about a decade ago.)

Blood Type and Your Personality at http://bodyecology.com/articles/link_blood_type_personality_diet.php

Until next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“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 best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ 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. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

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?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. 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 below 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 mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline. ‘”

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

IMG_1398

 

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

“But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.”

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

Keep living your life!

It’s Not Lemonade

Why drinking water with lemon is good for you screamed The Chicago Tribune at me today. Hmmm, I’d been wondering about that. Last week, happy birthdayI’d attended the 60th birthday celebration of my friend Naomi. She is studying nutritional counseling. That’s right: studying at age 60. As you can tell, no grass grows under the feet of the people in my social circle.

The celebration was held in one of the beautiful resorts out here in Arizona, The Sanctuary, in The Jade Bar to be exact. It was an odd location since this bar was long and narrow with couches and comfortable chairs lined up, but no place to mingle or chat in small groups. We ended up climbing over each other just to get to the rest room. Yet, my friend came running up to greet us.

Why? She wanted to know if I was drinking the water with lemon first thing in the morning as she’d suggested when I was a test case for one of her classes. She explained to me how important it was to people and her friends Lily and Patty leaned over to verify with their own personal anecdotes.

That, of course, got me to thinking. What was so special about this? Sure, it would warm up the vocal chords if you drank the lemon in warm water, but what else?

According to Tribune’s article at http://www.chicagotribune.com/lifestyles/health/sc-one-simple-thing-lemon-water-0420-20160415-story.html,

“Health experts say the acidity of the lemons improves digestion. Lemons contain potent antioxidants, which can also protect against disease, says Dr. Jonny Bowden, a nutritionist and health author. ‘It’s very alkalizing for the system,’ said the Woodland Hills, Calif.-based Bowden, whose lemonsbooks include “Smart Fat” and “The 150 Healthiest Foods on Earth.” Having a healthy alkaline balance helps fight germs.’”

Now this confused me. How can lemon – an acidic fruit – alkalinize your system?  Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

“To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline.”

I know, now you’re wondering what each of these terms mean. So am I…and I thought I knew. I turned to Online Biology Dictionary at http://www.macroevolution.net/biology-dictionary-aaaf.html:

“Acid – a sour-tasting compound that releases hydrogen ions to form a solution with a pH of less than 7, reacts with a base to form a salt, and turns blue litmus red…. An acid solution has a pH of less than 7.”

I used the same dictionary for the definition of alkaline, which referred me to the definition of alkali.

“Any metallic hydroxide other than ammonia that can join with an acid to form a salt (or with an oil to form soap).”

I didn’t find that very helpful so I turned to my old buddy The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/alkali

“a soluble salt obtained from the ashes of plants and consisting largely of potassium or sodium carbonate; broadly:  a substance (as a hydroxide or carbonate of an alkali metal) having marked basic properties”

Okay, that’s a little better, but not much. Let’s try this another way. I perused site after site. What I gleaned from these is that lemons are, indeed, acidic before they are eaten, but the body metabolizes them into alkaline. There was plenty of specific science to explain this, but I didn’t understand half of it and prefer to keep it simple.

Of course, then I wanted to know why I was even bothering to research this at all. LifeHacks at http://www.lifehack.org/articles/lifestyle/11-benefits-lemon-water-you-didnt-know-about.html, a new site for me, made it abundantly clear.

  1. Gives your immune system a boost.
  2. Excellent source of potassium.
  3. Aids digestion.
  4. Cleanses your system.CoffeeCupPopCatalinStock
  5. Freshens your breath.
  6. Keeps your skin blemish-free.
  7. Helps you lose weight.
  8. Reduces inflammation.
  9. Gives you an energy boost.
  10. Helps to cut out caffeine.
  11. Helps fight viral infections.

Now, you do have Chronic Kidney Disease, so be aware that lemons are a high potassium food. Potassium is one of the electrolytes we need to limit. Also, if you are prone to kidney stones, you’ll be very interested to know lemons are full of vitamin C, something you may need to avoid.

So far, it sounds like lemon juice in water upon waking is a good thing if you keep the two caveats above in mind but I think I’ll just check into this a bit more.

I looked in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, and discovered this succinct explanation of why you want to keep the potassium levels under guard as a CKD patient:What is it

“Potassium is something you need to limit when you have CKD despite the fact that potassium not only dumps waste from your cells but also helps the kidneys, heart and muscles to function normally. Too much potassium can cause irregular heartbeat and even heart attack. This can be the most immediate danger of not limiting your potassium….

Keep in mind that as you age (you already know I’m in my 60s), your kidneys don’t do such a great job of eliminating potassium. So, just by aging, you may have an abundance of potassium. Check your blood tests. 3.5-5 is considered a safe level of potassium. You may have a problem if your blood level of potassium is 5.1-6, and you definitely need to attend to it if it’s above 6.  Speak to your nephrologist (although he or she will probably bring it up before you do).”

If you’re in the normal potassium range on your blood tests as I am, I say go for the lemon juice in water first thing in the morning. Of course, I’m not a doctor and – even if I were – I’m not your doctor, so check with him or her first.

Oh, hopefully by next week, I’ll be able to give you the address for the Edge Podcast I was interviewed on last week. It wasn’t just about CKD, much to my surprise… and maybe that of the Mike G’s (the interviewer), too.SlowItDownCKD 2015 Book Cover (76x113)

Until next week,

Keep living your life!IMG_1398

Deep in the Heart of Texas

Last week I wrote that I’d tell you about our Texas trip this week and that’s just what I’ll do… sort of. We were in San Antonio for the Air Force Basic Training Graduation of a close family friend. I hadn’t wanted to go. The rest of the family was driving 14 hours straight. I thought they were insane.

It turned out I was right about that, but I am glad I went anyway.  The next day, our friend proposed to his girlfriend – who just happened to be our daughter – at The Riverwalk’s Secret Waterfall, Airmen escort and all. THAT was worth the ride. And we got to know his family better, understand them more, and value their company.  As they say in the ad, secret“Priceless.”

There was only one fly in the ointment. While the temperature was manageable for us since we live in Arizona, the humidity was not for the same reason. For my other than U.S. readers (and there are quite a few of them since I have 107,000 readers in 106 countries), Arizona’s usual humidity is low, very low. We do have a three minute rainy season in August (Okay, maybe it’s a teensy bit more than three minutes.) when it rises, but that’s not the norm.

Last week, the humidity in San Antonio, Texas, was between 68% and 72%. Even the air conditioning in the hotel bowed before it.  Our Airman had Air Force logoscheduled the entire weekend for us: The Airman’s run on an open field, late lunch at a restaurant with no available indoor seating, graduation on the parade field, an afternoon on The Riverwalk. There’s more, but you get the idea.  All of it outdoors, all of it in 68% to 72% humidity, all of it uncomfortable as can be.

And, it turns out, all of it not great for a Chronic Kidney Disease patient. Why? Well, that’s the topic of today’s blog. ResearchGate at https://www.researchgate.net/publication/263084331_Climate_change_and_Chronic_Kidney_Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over two years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”DIGITAL_BOOK_THUMBNAIL

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) NKF-logo_Hori_OBspokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes Digital Cover Part 2 redone - Copyless effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

Oh, so humidity affects sweating and body heat rises.  Humidity greater than 70%. That covers almost the entire time we were in Texas. Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning.html).”

bottled waterUh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

  1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
  2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know.  Stay in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather. Wearing a hat and cool clothes will also help. I certainly learned the value of wearing cotton this past week. It’s a fabric that breathes.

What is itUntil next week,SlowItDownCKD 2015 Book Cover (76x113)

Keep living your life!

How Sweet It Was

I’ve had an interesting turn around in my health this last week of National Kidney Month. You did know it’s still National Kidney Month, right?  National Kidney MonthYou did go get yourself tested for Chronic Kidney Disease, didn’t you? Hurry up! There’re only four more days left to National Kidney Month. You know I’m joking about this month being the time to get yourself tested, but I’m serious (unfortunately, sometimes dead serious) about getting yourself tested.

I know, I know, I’m preaching to the choir. But how many of you have told your friends, neighbors, family, and co-workers about just how simple – and important – these tests are. Let’s not let them become one of the 31 million with Chronic Kidney Disease or worse, one of those that don’t know they have it.

Excuse me while I step off my soap opera. Now, where was I? Oh, yes, the – ahem – interesting turn around in my health this month.

Okay, this is twofold. The first part is the weight. You think I’ve been having trouble keeping that in check since I started blogging four years ago, don’t you? I mean because I write about it so much. The truth is it’s been much, much longer than that.  Even way back in college when I was a size 7 for one day, I weighed more than ‘the charts’ said I should by 20 pounds or so. I looked good, I felt good, and my mom kept telling me I had ‘heavy bones,’ so I let it go.  Who knew any better back then?sorry face

What’s so bad about the extra weight you ask? You do know obesity is one of the causes of CKD, don’t you? Don’t feel bad if you didn’t. I didn’t. I just started noticing it showing up in the research in the last couple of years. That doesn’t mean it wasn’t there. It just means I never saw it if it was.

I mentioned weight in passing a few times in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is from my first nephrologist’s report:

“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.”

What is itBetter blood pressure and renal function? That’s when my battle with the numbers became real. And that’s when weighing and measuring food according to the renal diet allotments worked for a while… until I thought I could eye measure. So I went back to weighing and measuring… and it worked…until bomb shell number two fell in my lap: pre-diabetes.

In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.”DIGITAL_BOOK_THUMBNAIL

Let’s backtrack just a bit here. What does high blood glucose have to do with this? Well, that’s what tested to measure your A1C, which determines whether or not you have diabetes… or even pre-diabetes.

Back to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2 this time, in which I decry my A1C woes:

“This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement.

Part 2When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.

What I learned from my primary care physician on my last visit is that the A1C is not the only measure of diabetes. Although my blood glucose readings are still in the pre-diabetes range according to the A1C, my daily readings have sometimes gone over the 126 that’s considered diabetes. My head is spinning here. No one ever mentioned that magic number to me before.

I decided to conduct a little experiment last night. We know that high blood glucose is the result of sugar, but did you know that most carbohydrates turn into sugar? Last night I ate a chocolate bar and devoured at least half a dozen Saltines. This morning, when I pricked my finger and tested the blood, the reading was 129. Damn! Someone had to be the guinea pig and I volunteered myself… but all I’d proven was that sugar and carbs raise your blood sugar pretty quickly.

Now here’s the kicker. This is from SlowItDownCKD 2015 which is presently available digitally and should be out in print later this week:

“The Brits do a masterful job of explaining this effectively.  The following is from Patient.SlowItDownCKD 2015 Book Cover (76x113)

‘A raised blood sugar (glucose) level that occurs in people with diabetes can cause a rise in the level of some chemicals within the kidney. These chemicals tend to make the glomeruli (Me here inserting my two cents: what filters the blood in your kidneys) more ‘leaky’ which then allows albumin to leak into the urine. In addition, the raised blood glucose level may cause some proteins in the glomeruli to link together. These ‘cross-linked’ proteins can trigger a localised scarring process. This scarring process in the glomeruli is called glomerulosclerosis. It usually takes several years for glomerulosclerosis to develop and it only happens in some people with diabetes.’”

My nephrologist told me to cut out sugar and carbs to lose weight. I’d already cut out sugar, so I cut out (or at least drastically down on) carbs. The black breadresult: a very slow weight loss. Of course, this is new to me so I don’t know if that two pound weight loss in a month will continue every month, but I’m willing to give it a try. Say, that’ll have a possible effect on eliminating the diabetes, too!

Until next week,

Keep living your life!

Renal Sally Port

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

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

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

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

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

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

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

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

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

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

What is it“Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries.  This is where the blood from the renal artery is filtered.  The glomerulus is connected to a renal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.”

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

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

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

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

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

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

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

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

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

Decreased kidney function leads to decreased cognitive functioning

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

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

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

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

Until next week,

Keep living your life!

Inked

tattooThere’s a woman I know, younger than I by three and a half decades, who is inked… and I mean inked. She has sleeves on both arms and (almost) a body suit.  Don’t know what I’m talking about? Take a look at http://www.inkedmag.com/tattoo-lingo/. Unfortunately she’s lost a job or two when narrow minded employers saw her arms, but that’s not what I’m writing about today.

Oh, all right. Here are the definitions of the jargon above: inked = tattooed; sleeve= fully tattooed on the arm; body suit= tattoos on the majority of the body.

I was thinking about her the other day and that got me to thinking about tattoos and whether or not they’re safe for us since we have Chronic Kidney Disease. Let’s take a look at the tattooing process itself to see if there’s anything there to worry about.

I turned to The Mayo Clinic at http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/tattoos-and-piercings/art-20045067 for this information.

“A tattoo is a permanent mark or design made on your skin with pigments inserted through pricks into the skin’s top layer. Typically, the tattoo tattoo machineartist uses a hand-held machine that acts much like a sewing machine, with one or more needles piercing the skin repeatedly. With every puncture, the needles insert tiny ink droplets.

The process — which is done without anesthetics — causes a small amount of bleeding and slight to potentially significant pain.”

Personally, I’m too much of a scaredy cat to give tattooing a try now that I know about the possibility of pain. There’s enough of that in my life already… like the endometrial biopsy a few months ago. Ugh! But maybe you’re not…

Well, why might you want a tattoo in the first place? Maybe it’s an artistic requirement for your soul.  Maybe it’s to remind yourself of some life lesson like my New York daughter, Nima’s. Or maybe it’s a medical tattoo to wear rather than a medical alert bracelet.

What is itHmmm, I’d think again. As CKD patients, our blood is already not that pure. Remember, as I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“The kidneys remove these toxins (e.g. from the blood) and change them into urine ….”

Our kidneys are not functioning at the top of their game. With my current GFR of 51, my kidneys are only functioning at a teeny bit more than half capacity while still trying to filter the blood as kidneys with a GFR of 100% would. Oh, right, GFR. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 that’s explained according to the NKDED:

“The National Kidney Disease Education Program at The U.S. Department of Health and Human Services provides the following information.DIGITAL_BOOK_THUMBNAIL

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

Here’s what I found on Health Impact News at http://healthimpactnews.com/2015/think-before-you-ink-the-little-known-risks-of-tattoos/ that makes me so leery of tattoos.

“In 2011, a study in The British Journal of Dermatology revealed that nanoparticles are indeed found in tattoo inks, with black pigments containing the smallest particles (white pigments had the largest particles and colored pigments were in between).

Nanoparticles are ultramicroscopic in size, making them able to readily penetrate your skin and travel to underlying blood vessels and your bloodstream. Evidence suggests that some nanoparticles may induce toxic effects in your brain and cause nerve damage, and some may also be carcinogenic.”Healthy%20Kidney

Whenever I speak to someone who has a tattoo, they tell me the ink only goes as far as the dermis (the second layer of skin) and nowhere near the blood.  I often wondered about that since the dermis is rife with blood vessels. I guess I just learned that the tattoo owners were misinformed. And why we as CKD patients should not be allowing even the possibility of more toxins entering our blood streams for our already overworked kidneys to eliminate.

Are tattos pretty? I think so.  Are they spiritual? Sometimes they are. Are they worth the risk? It’s your decision, but I can’t agree that they are. I found even more evidence to the contrary on WebMd at http://www.webmd.com/skin-problems-and-treatments/laser-tattoo-removal?page=2

“There are minimal side effects to laser tattoo removal. However, you should consider these factors in your decision:

tattoo removalThe tattoo removal site is at risk for infection. You may also risk lack of complete pigment removal, and there is a slight chance that the treatment can leave you with a permanent scar….”

I’d also read on various sites that simply being tattooed may leave you open for infection if the autoclave (instrument steaming machine) or needles are not clean enough. I don’t know of any sites to rate the cleanliness of tattoo parlors, but I do know infection opportunities are far more common for us as CKD patients…and they are more dangerous for us.

This paragraph from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 should clarify the why of avoiding infection possibilities.

Digital Cover Part 2 redone - Copy“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.”

I wondered if I’d find enough information for a blog about CKD patients and tattoos. On the contrary, I find I could go on and on.

Tuesday is the beginning of National Kidney Month. While I won’t be leading my team in the kidney walk this year (Damn neuropathy!), I’ve got another surprise up my sleeve to celebrate. I may be able to announce that next week.2015-04-18 22.09.45

Don’t forget about the National Kidney Fund of Arizona’s annual conference on March 11th and 12th. I’ll be there on the 11th. You can register at www.SWNC.org.

Until next week,

Keep living your life!

Still Getting Birthday Gifts… like OAB

happy birthdayBear has just spoiled me and spoiled me for this birthday. It was not a special birthday, just a birthday. His reasoning, “I’m celebrating being with you for another year.” Which, of course, made me think. My first thought? I realized how much I liked being adored by the man I love.

My second?  Time changes things.  Your weight changes.  Your hair color changes.  Even your height changes. There are those that say aging is a problem. I say if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.

Part of the birthday celebration was an overnight at The Desert Rose Bed and Breakfast in Cottonwood. The place was unique. They house animals they’ve rescued: llamas, cats, chickens. I thought the llamas were the most picture worthy, but then I’d never seen the kind of fluffed out rooster they had. Up the hill was a goat farm. For a city woman like me, this was heaven.

Except – there was this – there were no hand rails on the steep path from the house to the animals. Nor were there steps. The runoff from a recent hose cleaning of some apparatus near the house caused the loose gravel covered road to be slick. So we took teeny little ‘old person’ steps while the owner, a young woman possibly in her thirties, practically scampered. We got to see the animals, but we had to adapt how we got to them due to our age related capabilities.llama

The private bath was another eye opener for me. Bear opted for the room with the spa. It was so relaxing and could have even been romantic except that there were no grab rails. We slipped, we fell, we worried if Bear broke his foot.  But it was supposed to be romantic!

Oh well. There was also the kind of shower I’d only seen in magazines.  You know the kind that could easily fit six people (uh, not my style) with two separate shower heads – one on each end of the shower. This was a new toy for me, until the floor got wet. Again, no grab rails. There was no safety mat on the shower floor, either. So we tried to hold on to the walls. Hah! They were tile that was just as slippery.

You get the point?  This was a beautiful, romantic, upscale bathroom… and wasted on us because there were no safety features to accommodate our gifts from aging. Of course, not everyone would have felt this way, but we each have neuropathy which can make balancing difficult.

shoqweIn addition to grab bars in our at home bathrooms, we have no area rugs anywhere in the house. This is to cut down on the possibility of tripping. When our primary care doctor suggested ways to prevent injuring ourselves, we listened. Bear’s time flat on his back after his foot surgery convinced us we never wanted to go through that again. For me, with my ‘age related’ macular degeneration, we also use ultra-bright LED bulbs throughout the house.

Okay, so where am I going with this? I’m circling in on the kidneys via urination. Remember the kidneys produce urine which is stored in the bladder.  I wanted to know what was usual for people ‘our age’ and why. After all, I’d made the bathrooms as safe as possible understanding that one or the other of us was going to get up during the night to urinate.

I turned to The Cleveland Clinic at http://health.clevelandclinic.org/2015/12/stop-full-bladder-killing-sleep/ for some help.

“If you’re urinating more than eight times in 24 hours, that’s too much. A lot depends on your age. And if you’re between age 65-70 and going more than twice a night, you should make an appointment with your doctor. Also, see a doctor if you are getting up more than once a night if you are between age 60-65, and more than three times each night if you are age 70 or older. While your bladder’s capacity does not necessarily decrease with age, the prevalence of overactive bladder increases with age.”

Apparently, an overactive bladder may also lead to increased falls. Not fair! We’re already dealing with the neuropathy to avoid this. Oh, right. “…if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.”detrusor

I wonder if aging is a factor because the detrusor (bladder muscle) ages right along with the rest of you.  A long time ago, I explained that my Chronic Kidney Disease was caused by nothing more than growing older. I hate to admit it, but it does make sense. All of you ages when you age, not just certain parts.

What is itBirthday giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease! All you have to do to win is be one of the first three people to enter the contest and follow SlowItDownCKD on Twitter. Here’s link to enter for a chance to win: https://giveaway.amazon.com/p/542abbec7a52e10a#ln-fo

I hope you’re keeping an eye on P2P’s Chronic Illness Buy and Sell’s contest. I’ll be gifting a copy of one of my Chronic Kidney Disease Books to three different winners.  Each winner will receive a different book. This one started February 1st and runs until St. Valentine’s Day.  Here’s the address: http://www.facebook.com/groups/P2PBuy.Sell. You do need to be a member of the group, tag yourself in a comment below the announcement of the contest, and be involved with kidney disease as a patient or caretaker.

My accountant (Yep, working on those this week.) thinks I’m nuts to be part of so many giveaways and contests, but my mission… no, my passion… is to get information about Chronic Kidney Disease out to as many people as I can, in as many ways as I can, for as long as I can.

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To that end, Phoenix area readers, please let me know if you are interested in joining Team SlowItDownCKD for this year’s kidney walk at Chase Stadium on Sunday, April 17.

Until next week,

Keep living your life!

Another Cause of CKD?

180116_10150140748275850_2010917_nI’ve mentioned before that I’d been an actor for decades before I retired from this maybe four years ago.  As happens when you’re lucky, I’ve remained friendly with some of the wonderful people I met through the plays and/or movies I’ve been in.  One such friend – James David Porter, a talented scriptwriter, director, actor, founder of Arizona Curriculum Theater, and an extremely intelligent person – is cognizant of both my Chronic Kidney Disease and my awareness advocacy for the disease.act

You probably already know about the warnings re heartburn and kidney disease … so is he. As soon as the news hit general sites, he posted it to my personal Facebook page.  I’d already picked up the information about this from the medical sites I belong to, but he didn’t know that. I love it when my friends look out for me.

And I, in turn, want to look out for you. That’s why I’ll be writing about the problem today. Let’s go way back to the beginning for this one.

I had had something: heartburn, upset stomach, acid reflux??? a few months ago. Not having experienced digestive problems before I didn’t know what it was. Heck, I didn’t even know if it was a digestive problem, but I knew I couldn’t take the nausea and sensitive stomach too much longer without investigating.  After weeks of this not going away on its own, I made an appointment with my trusted primary care doctor.

While I was waiting for the appointment, I took a look at Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. although I bookcan only understand some of it and we know how dangerous a little knowledge can be. According to what I read, it didn’t seem that I had an ulcer. Hmmm, maybe gastritis?

Something seemed off with what I was reading, sort of out of sync, so I checked copyright date. Uh huh, the book is 14 years old… and outdated. Time for a newer edition.  Case in point and message sent: check the copyright dates of any medical texts you have.  They get outdated fast these days.

Okay, let’s see what the doctor had to say. She addressed my ‘abdominal pain in the pit of my stomach’ and the nausea, diagnosing it as ‘epigastric pain’ and nausea. Well, how is that different from stomach pain?

The stomach is defined by WebMD at http://www.webmd.com/digestive-disorders/picture-of-the-stomach in this way:

“The stomach is a muscular organ located on the left side of the upper abdomen. The stomach receives food from the esophagus. As food reaches the end of the esophagus, it enters the stomach through a muscular valve called the lower esophageal sphincter.

The stomach secretes acid and enzymes that digest food. Ridges of muscle tissue called rugae line the stomach. The stomach muscles contract periodically, churning food to enhance digestion. The pyloric sphincter is a muscular valve that opens to allow food to pass from the stomach to the small intestine.”

stomach_72I always get the stomach and the abdomen mixed up, so I looked that up too. Healthline at http://www.healthline.com/human-body-maps/abdomen#seoBlock was helpful here.

“The abdomen is the area below the chest and above the pelvis. It is comprised of muscles, vertebrae, ribs, blood vessels, nerves, and several vital organs, including the liver, small intestine, large intestine, and kidneys.”

Oh, so the stomach is part of the abdomen.

We still need one more definition here: Epigastric. According to The Free Dictionary at http://www.thefreedictionary.com/epigastric, that means, “The upper middle region of the abdomen.” Ah, another part of the abdomen.

The good doctor prescribed 40 mg. of Omeprazole each morning before breakfast. Omeprazole’s generic name is Prilosec. I saw nothing in the pharmacy handout for this medication that related specifically to CKD.

However, the risk doesn’t seem to be to me since I already have CKD but to those who use these drugs who do not yet have CKD. I do wonder if it could cause Acute Kidney Injury or acute interstitial nephritis (both short term as opposed to chronic) in those who both already suffer from CKD and use these drugs since it’s not made clear in the articles.

There are many versions of this announcement but I’ll be using the one from HealthDay at http://consumer.healthday.com/gastrointestinal-information-15/heartburn-gerd-and-indigestion-news-369/ppis-and-kidney-disease-706877.html since it is the least medicalese one I’ve located.

gastro“MONDAY, Jan. 11, 2016 (HealthDay News) — A type of heartburn medication called proton pump inhibitors may be linked to long-term kidney damage, a new study suggests.

Prilosec, Nexium and Prevacid belong to this class of drugs, which treat heartburn and acid reflux by lowering the amount of acid produced by the stomach.

People who use proton pump inhibitors (PPIs) have a 20 percent to 50 percent higher risk of chronic kidney disease compared with nonusers, said lead author Dr. Morgan Grams, an assistant professor of epidemiology at Johns Hopkins University in Baltimore.

The study was published Jan. 11 in JAMA Internal Medicine.

The study doesn’t establish a direct cause-and-effect relationship between the drugs and chronic kidney disease. However, Grams said, ‘We found there was an increasing risk associated with an increasing dose. That suggests that perhaps this observed effect is real.’”

This information is brand, spanking new. I would suggest speaking to your doctor if you are taking one of these medications. I would not suggest doing anything – such as stopping without medical advice – in a panic.  I’m a nut about my health and even I spoke this over with my PCP, who I might mention, is a highly collaborative doctor, one who listens to what I have to say and talks it over with me. Now that’s the way to have a doctor.

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Book news!  The twins will have a little brother this year. Translation: There will be another Book of Blogs, although I think it’s time for a less unwieldy title. Maybe something like SlowItDownCKD: 2015. Also, my birthday is February 2, so Facebook’s P2P’s Chronic Illness Buy & Sell and I are cooking up a little online birthday party. You’re all invited.What is it

Until next week,

Keep living your life!

Blood and Thunder, Without the Thunder

I’ve been thinking a lot about blood lately and realize it’s time for a refresher about blood and CKD. It’s been doctor-visits-week for me and each one of them wanted to talk about blood test numbers… because I have Chronic Kidney Disease and my numbers are the worst they’ve been in seven years.Blood Oxygen Cycle Picture 400dpi jpg

This made me realize how very little I remember when it comes to how CKD affects your blood.  Soooo, I’m going right back to the very beginning. According to National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-communication-programs/nkdep/a-z/kidney-disease-mean-for-me/Pages/default.aspx, this is how:

“CKD means that your kidneys are damaged and can’t filter blood like they should. This damage can cause wastes to build up in your body. It can also cause other problems that can harm your health.”

By the way, this is a reader friendly page with visuals that the organization freely shares. You’ve seen them in my books and blogs. There is no medicalese here, nor is there any paternalism.  I like their style.

The National Kidney Foundation at https://www.kidney.org/kidneydisease/aboutckd explains in more detail.

“If kidney disease gets worse, wastes can build to high levels in your blood and make you feel sick. You may develop complications like high blood pressure, anemia (low blood count), weak bones, poor nutritional health and nerve damage. Also, kidney disease increases your risk of having heart and blood vessel disease. These problems may happen slowly over a long period of time.”

Maybe seven years is that ‘long period of time’, not that I have heart or blood vessel disease that I know of. But I do have high blood pressure which may have contributed to the development of the CKD. Circular, isn’t it? High blood pressure may cause CKD, but CKD may also cause high blood pressure.  Or is it possible that the two together can cause ever spiraling high blood pressure and worsening CKD?

Book CoverI’m going to go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease here for some basic definitions that may be helpful in understanding today’s blog.

Albumin:   Water soluble protein in the blood.

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

Hypertension: A possible cause of CKD, 140/90 mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too. (New guidelines say these numbers are for CKD patients.)

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

Let’s take a detour to see how sodium can affect high blood pressure which can affect so many other conditions.  This is a quote from Healthline.com at http://www.healthline.com/health/fast-food-effects-on-body which appeared The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“Too much sodium helps to retain water, so it can cause general bloating and puffiness. Sodium can contribute to high blood pressure {Which, as we know, is the second leading cause of CKD} or enlarged heart muscle. If you have congestive heart failure, cirrhosis, or KIDNEY DISEASE {My bolding and capitalization in this paragraph.}, too much salt can contribute to a dangerous build-up of fluid. Excess sodium may also increase risk for kidney stones, KIDNEY DISEASE, and stomach cancer.

High cholesterol and high blood pressure are among the top risk factors for heart disease and stroke.”Part 2

Oh my! Sodium, high blood pressure, enlarged heart muscle, stroke, heart disease, dangerous fluid build-up. They all can be inter-related. And that’s the problem with CKD:  your blood is not being filtered as it should be. There’s waste buildup in your blood now.

It’s that same not well filtered blood that flows through your body possibly causing hearing problems, as was discussed in a previous blog.  It’s that same not well filtered blood that flows through your body possibly causing your high blood pressure. It’s that same not well filtered blood that flows through your body possibly causing “swelling in your anklesvomitingweakness, poor sleep, and shortness of breath.” (Thank you WebMD at http://www.webmd.com/a-to-z-guides/understanding-kidney-disease-basic-information for that last quote.)

I’m sorry to say this all makes sense.  All these conditions are inter-related and they may be caused by CKD, or high blood pressure which causes CKD, or both.

blood pressure 300dpi jpg

I see something I’ve ignored here. I have high blood pressure and I have CKD… and a lot of microalbumin in my urine.  This is new, and it’s a bit scary. Oh, all right, a lot scary.  I write about it so I have to research it and therefore, allay my fear by learning about it.

What did I learn about microalbumin, you ask? The MayoClinic at http://www.mayoclinic.org/tests-procedures/microalbumin/basics/definition/prc-20012767 says it in the simplest manner.

“A urine microalbumin test is a test to detect very small levels of a blood protein (albumin) in your urine. A microalbumin test is used to detect early signs of kidney damage in people who have a risk of kidney disease.Unhealthy%20Kidney

Healthy kidneys filter waste from your blood and keep the healthy components, such as proteins like albumin. Kidney damage can cause proteins to leak through your kidneys and leave your body in your urine. Albumin (al-BYOO-min) is one of the first proteins to leak when kidneys become damaged.”

At first, I laughed it off; I already know I have CKD. Until I saw the results for this test, but I’ve requested what we used to call a do-over when we were kids and my doctor saw the value in that.

Ready for some good news?

Both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 have indexes now. I promised them before Christmas and Kwanzaa and I delivered. Sort of, that is.  Amazon came through right away; B&N.com will take another five weeks or so.Digital Cover Part 1

Happy, happy holidays to all of you.  I’ll see you once more before 2016. Talk about time flying!

Until next week,

Keep living your life!

Now What? Oh, the Pressure.

I had fully expected to be publishing a guest blog by a personal chef today.  All she needed was a copy of the renal diet I followed.  Well, that was Thanksgivingwhat we had talked about. But, as happens sometimes, that was simply not meant to be. Hmmmm, could this be the universe offering me another indication that I was correct in thinking I needed to stay away from writing about recipes on the blog?

So there I was casting around for a topic that I wanted to know more about and you’d enjoy reading about. Of course, I’d already completed my daily perusal Twitter for any articles about anything related to Chronic Kidney Disease.

Bingo!  This is what I found on Twitter about something I’d never really understood:  ‘Blood Pressure, the Top and Bottom Numbers ‘(and I’ll add here:  the risk of disease). The URL for this is http://well.blogs.nytimes.com/2015/12/09/ask-well-blood-pressure-the-top-and-bottom-numbers/?partner=rss&emc=rss&smid=tw-nythealth&smtyp=cur

“Both elevated systolic blood pressure (the top number) and diastolic (the bottom number), together or alone, increase the risk for cardiovascular disease. The systolic reading indicates the pressure in the arteries produced when the heart beats; the diastolic is the arterial pressure between beats, when the heart is at rest. Readings below 120/80 are considered healthy.

Though high systolic and diastolic readings are both associated with increased risk, they may present different risks for different diseases. In 2014, researchers published a study of more than 1.25 million people 30 and older who were initially free of cardiovascular disease. They recorded their blood pressures, and followed them for an average of 5.2 years, during which 83,098 developed cardiovascular disease.

blood pressure 300dpi jpgOver all, those with a reading above 140/90 had a higher risk for cardiovascular disease than those with lower blood pressure — an unsurprising finding.

But the researchers also found that the risk of some diseases could be predicted by a high systolic reading, and others by a high diastolic reading. For example, the risk for heart attack is more strongly associated with an elevated systolic pressure. But the risk for abdominal aortic aneurysm, a swelling or rupture in the large artery that goes from the heart to the chest and abdomen, is higher when the diastolic pressure is elevated.

‘It’s reasonable to say that the systolic effect over all is slightly stronger than the diastolic,’ said the senior author of the study, Dr. Harry Hemingway, a professor of clinical epidemiology at University College London and director of the Farr Institute.

‘But if you have isolated diastolic hypertension,’ he added, ‘you still have hypertension, and you should take measures to lower it.’”

This makes sense, but it certainly got me to wondering. I wanted to know which of these numbers was more important to your health. Here’s what The American Heart Association at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Low-Blood-Pressure_UCM_301785_Article.jsp had to say about that.

“Typically more attention is given to the top number (the systolic blood pressure) as a major risk factor for cardiovascular disease for people over bp cuff50 years old. In most people, systolic blood pressure rises steadily with age due to increasing stiffness of large arteries, long-term build-up of plaque, and increased incidence of cardiac and vascular disease.”

Wait a minute. Is this contradictory? I get it that you need to pay extra attention to the systolic number if you’re over 50, but this statement seems to be saying that your blood pressure is going to rise anyway because you’re over 50.

I found this age appropriate blood pressure reading chart at Disabled World (http://www.disabled-world.com/artman/publish/bloodpressurechart.shtml)

Age

Systolic BP Diastolic BP
3-6 116 76
7-10 122 78
11-13 126 82
14-16 136 86
17-19 120 85
20-24 120 79
25-29 121 80
30-34 122 81
35-39 123 82
40-44 125 83
45-49 127 84
50-54 129 85
55-59 131 86
60+ 134 87

Ah, so your numbers will rise as you age, but not to any danger level.  Hmmmm, I’m usually in the 60+ range and hadn’t realized that was normal. Good thing I hadn’t spent any time worrying about those readings.

Well, what about the new(ish) guidelines for a healthy blood pressure?  How does that fit in here?

“Adults aged 60 or older should only take blood pressure medication if their blood pressure exceeds 150/90, which sets a higher bar for treatment than the current guideline of 140/90, according to the report, published online Dec. 18 (2013) in the Journal of the American Medical Association.

stages of CKDThe expert panel that crafted the guidelines also recommends that diabetes and kidney patients younger than 60 be treated at the same point as everyone else that age, when their blood pressure exceeds 140/90. Until now, people with those chronic conditions have been prescribed medication when their blood pressure reading topped 130/80.”

The above is from WebMD at http://www.webmd.com/hypertension-high-blood-pressure/news/20131218/new-blood-pressure-guidelines-raise-the-bar-for-taking-medications.

One note of warning here: I tested at the usual levels for someone my age when I was in my 50s, so I stopped the Hbp medication.  Yes, there was a six month honeymoon period of in sync readings. But then, they went up and up.  It was the medication that was keeping me in the normal range.

I was delighted to give you and me the Chanukah present of an index for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. This new edition is now on sale at Amazon.com and should be on B&N.com in between five to seven weeks.  If you’ve already bought a copy of the book and would like an index, email me at SlowItDownCKD@gmail.com and I’ll be glad to send it to you.

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Now for an early Christmas/Kwanzaa present for all of us… The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now indexed and the new edition should be on sale at Amazon by the end of next week. B&N.com will take an additional six to eight weeks.  The offer to email you an index if you have an older edition of the book stands for Part 2 also.

It feels like What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is being left out so look for a contest for that book around New Year’s.What is it

Until next week,

Keep living your life!

Last One

Between my indexing work on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  and that of Amy Hall at AmethystHarbor.com (indexer par excellence) on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, you can email me at slowitdownckd@gmail.com for an index for the copies of the books you already bought.  I’ll need your email address and which index you need: Part 1 or Part 2 or both. This is my Chanukah gift to you.

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And let’s not forget What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the twins’ big sister.

What is it

Ready for the blog? This is the last piece in a series on what I call wellness supplement plans. My good buddy, Mary Dale at (480) 415 – 7748 or Mary.Dale@rocketmail.com (love that email address) tried this one and liked it so much that’s she’s recently become a distributor. Note: Mary – thankfully – is not a Chronic Kidney Disease patient. Her information above is not for the purpose of promoting the product to CKD patients, but something to pass on to non-CKD friends should they become interested.it works

The plan Mary uses is called It Works!  You can find information that I may not be including in today’s blog at ItWorks.com. The home page allows you to choose your country and language, but offers no ingredient labels. Rather, the ingredients are listed without percentages or specifics. It struck me as more of a selling and keeping up with new products page. I couldn’t use the information for the blog.

I did find this interesting. (Mark Pentecost is the founder of the company.)

“The more I got into the education of a vitamin, I started learning more about what’s all natural versus synthetic,” says Mark. “A lot of times you’d find that a product might have 100-200 ingredients, but there wasn’t enough of each ingredient for the product to actually do what the clinicals showed they could do. You want something foundational that you know has the key ingredients to help keep us healthy and be the best we can be.”

Okay, all natural is good.  But how much of what was in each product?

Ugh. What was I going to do now? I could change the topic… but wait. Mary’s buddy, Allie Helm, called me with directions as to how to get into the site to a spot where I could see just what I needed. Great timing, ladies.

409px-Glass-of-waterI thought I’d start with Allie’s favorite, which is Greens On The Go {Orange} Alkalizing Drink Powder. The directions say to mix the powder with 8 ounces of water or fruit juice. I started looking at the ingredients when ‘silica’ at the bottom of the page caught my eye. I knew about occupational silica, but what about this in a supplement?

Livestrong.com at http://www.livestrong.com/article/288425-side-effects-of-silica-supplements/#sthash.9dJB8q7k.dpuf tells us,

“The University of Maryland Medical Center says that prolonged use of silica supplements in any form is not recommended. Severe kidney trouble may occur after prolonged use. Kidney stones have been reported in people taking silica supplements, which may be due to a buildup of silica in the body since only a small amount is needed for the body to function properly. Also, general kidney deterioration, which is irreversible, will eventually occur with excess silica in your system.”

Well, that’s out for Chronic Kidney Disease patients. Let’s take a look at Mary’s favorite product. She likes the Advanced Formula Fat Fighter with Carb Inhibitors. The directions read, “Adults take 2 tablets during or up to 60 minutes after each large meal. Drink at least 8 glasses of water daily.” Hmmm. Above the directions, there’s a caution: “Consult your physician if you… have a medical condition.”

We do. We have Chronic Kidney Disease.

I never even got to the ingredient label with this one.  My eye was snagged by the Other Ingredients, one of which was also silica. Another is dicalcium phosphate, better known as phosphate salts. Awwww. As CKD patients, we need to watch both the phosphorous and sodium in our diets without adding any in supplements. Nuts, I really liked the idea of something thatbelly fat

‘…will absorb the fat and carbohydrates from your food so that your body doesn’t.”

Not only that, but here I am doing my best to avoid Type 1 Diabetes and this product also claims that it “Helps balance blood glucose level…”

Dirty words.  I knew it was too good to be true – at least for a Chronic Kidney Disease patient.

I guess we’ve learned our lesson this month, ladies and gentlemen.  While each of the products may or may not be just the ticket for those without CKD, we do have CKD… which means they are not all for us. I am disappointed, but as I always say, “My kidney function comes first.”

Talking about that:

WHAT: Free Community Health ScreeningNKF-logo_Hori_OB
WHEN: Saturday, December 5, 2015 from 8:00am-1:30am (appointments highly encouraged)
WHERE:  First Institutional Baptist Church | 1411 E. Jefferson Street, Phoenix, AZ 85034
WHO: Participants must be 18 years of age or older AND
a) have a family member (father, mother, brother, sister) with diabetes, heart disease or kidney disease
OR b) participant must have a personal history of diabetes or high blood pressure.

TO MAKE AN APPOINTMENT: Please call (602) 840-1644 English / (602) 845-7905 Spanish

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

They provide free blood and urine testing, which is evaluated on site using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Until next week,

Keep living your life!

It Would Have Been Nice…

NYC I’m just back from a wonderful week in New York where people traveled great distances to see me, gladly opened their homes to me, and introduced me to interesting – very interesting – people. Between my family and friends, I haven’t felt this loved in a long time…and I always feel loved.

But one thing bothered me. I couldn’t seem to get enough fruit and vegetables each day since I was staying with people who ate differently from me, had different schedules than I did, and took me out to restaurants quite a bit.

Some days, there were no vegetables at all in my diet.  I didn’t like that, so I started playing around with ideas of how I could avoid this problem when next I travel visiting others. I seem to have no problem when I’m by myself during my travels.

This time, I had stopped at little markets on my way from one place to another, but no one was willing to sell me half a banana (for example) and, considering the timing of my market visits, some hadn’t received their fresh fruit and vegetable deliveries yet or had already sold out of them.  Mind you, I’m not talking about big chain supermarkets here. There weren’t any near the elevated or subway train stations I used.fruits and veggies

That’s when I remembered Janet Cook who is a Juice Plus representative, so I took a look at her website. On, my! This is a product I wish I had discovered before being diagnosed with Chronic Kidney Disease.

This is how Juice Plus+ describes itself on her website at http://janetcook.juiceplus.com/content/JuicePlus/en/what-is-juice-plus/what-is-juice-plus.html

Juice Plus+ is whole food based nutrition, including juice powder concentrates from 30 different fruits, vegetables and grains. Juice Plus+ helps bridge the gap between what you should eat and what you do eat every day. Not a multivitamin, medicine, treatment or cure for any disease, Juice Plus+ is made from quality ingredients carefully monitored from farm to capsule to provide natural nutrients your body needs to be at its best.

No great claims, just common sense getting the fruits and vegetables you may be missing every day.  Natural nutrients. Oh, joy! But wait… what’s this about concentrate?

The Cambridge Dictionary at http://dictionary.cambridge.org/us/dictionary/english/concentrate offers us both the noun (name) and verb (action) definitions for concentrate.

Noun – a substance from which water or other substances have been removed

Verb – to make a ​substance ​stronger or ​purer by ​removing ​water or other ​substances

We’re used to the noun definition, but did you realize that, according to the definition of the word as a verb, concentration makes a substance stronger?

I scoured the website for the concentration’s equivalence of each fruit and vegetable but couldn’t find them. Then I realized that’s futile. If they are in the mix, how can you figure out how much of it is in the concentrate?

Janet was quick to offer me the name and email address of their consulting doctor when I explained my quandary to her. I liked that: transparency about their product.

She’d also asked me repeatedly which fruits and vegetables I couldn’t have.  Much to my chagrin, I realized I’d never answered her. I downloaded the ingredients in two of their products and compared them to the Northern Arizona Council on Renal Nutrition Diet which I follow.

 Juice Plus+ Orchard & Garden Blend

20 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato •

Juice Plus+ Orchard, Garden Blend & Vineyard Blend

30 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato • Artichoke • Bilberry • Blackberry • Black Currant • Blueberry • Cocoa • Concord grape • Cranberry • Elderberry • Pomegranate • Raspberry •

Again, I was taken with the transparency.  However, I found another problem for CKD patients here. I am restricted to 3000 mg. of potassium and 800 mg. of phosphorous daily.  Artichokes and dates are high potassium food. And don’t forget the products are concentrated which means the potassium count will be even higher.  Brans, bilberry, and cocoa are high in phosphorous.

Then there’s the problem that our kidneys are not so great at filtering waste from our bodies when we have CKD. That means the excess potassium and phosphorous stay in our bodies longer and more of it stays.

Globe-ArtichokeAccording to WebMD at http://www.webmd.com/a-to-z-guides/hyperkalemia-causes-symptoms-treatments?page=2

Hyperkalemia {That’s the medical term for excess potassium.} is a common cause of life-threatening heart rhythm changes, or cardiac arrhythmias. It can lead to an emergency condition called ventricular fibrillation. In this condition, the lower parts of your heart flutter rapidly instead of pumping blood.

Untreated, an extremely high amount of potassium in your blood can make your heart stop beating, causing death.

Excess phosphorous is a bit more complicated. Healthline at http://www.healthline.com/health/phosphorus-in-diet#TooMuchPhosphorous6 informs us of the following.cocoa

According to the NIH {This refers to the National Institutes of Health.}, it’s rare to have too much phosphorus in your blood (NIH, 2011). Typically, this problem only develops in people with kidney disease or those who have problems regulating their calcium.

However, too much phosphate can be toxic. An excess of the mineral can cause diarrhea, as well as a hardening of organs and soft tissue.

Having too much phosphorus in your blood can also cause it to combine with calcium, forming mineral deposits in your muscles.

High levels of phosphorus can also affect your body’s ability to effectively use other minerals, such as iron, calcium, magnesium, and zinc.

What is itThere’s more discussion of how CKD can affect the amounts of what we can tolerate and why in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is one of the topics I found the most confusing when I was first diagnosed.

Am I disappointed that I can’t take this product? A little, but not enough to take the chance of hastening the decline of my kidney function even further. Everything we put in our mouths – food or medication – affects our CKD.

Say, were you part of the book giveaway?  Would you like me to congratulate you publicly on the blog? Let me know.  And look for another giveaway when the indexes for the twins are done.IMG_1398

Until next week,

Keep living your life!

Well, What About Mexico?

Last week, I was telling you about Chronic Kidney Disease in the ports of call on our delayed (but finally arrived) honeymoon, which turned out to be a family honeymoon. But then, I ran out of room to talk about Mexico and promised to do so next week. So, as in the punchline of an off color joke my dad used to tell, “Here t’is.”cozumel

Unless you’re a scuba diver like my step-daughter and her sweetheart or a partying young’un, you may have not been to Cozumel. It’s a small part of the country on the East Coast and – again – we were warned not to get off the bus unless we were told to. It’s also where we got to see some of the Mayan ruins and learn about the culture, as well as take a side trip to a cacao factory.  That smelled so good! The rest for us was some really beautiful scenery from the bus windows and an overwhelming shopping area at port.

I‘ve been to San Miguel de Allende, in Guanajuato State, for a writers’ conference and met both American and Canadian ex-patriates there as well as those that winter in the relative warmth there.  No one said it’s not safe. No one said stay on the bus or within the compound…and I got to meet the natives, too. What a lovely, warm people.

I’ve been to Ensenada decades ago and marveled at how uncommercialized it was.  Of course, I don’t know if it’s still like that. I only have my memories there. I also vague memories of visiting different areas in Mexico long ago, but vague is the operant word here.stages of CKD

Never once did I think about Chronic Kidney Disease treatment while I was there until this last time. Heck, I didn’t even know what CKD was much less that it could be treated.

So, what about Mexico? It would make sense to deal with the most shocking news first.  This is from National Public Radio in April of last year.  You can read more about the various theories as to what caused the vast number of deaths at http://www.npr.org/sections/health-shots/2014/04/30/306907097/mysterious-kidney-disease-slays-farmworkers-in-central-america

nprThis form of kidney failure, known as insuficiencia renal cronica in Spanish (or chronic kidney disease of unknown origin in English), is now found from southern Mexico to Panama, Turcios-Ruiz says. But it occurs only along the Pacific coast.

The disease is killing relatively young men, sometimes while they’re still in their early 20s. Researchers at Boston University have attributed about 20,000 deaths to this form of kidney failure over the past two decades in Central America.

(More recent reports have suggested it was severe dehydration that caused CKD in these young men.)

This is from a 2010 report published in the National Institutes of Health PubMed at http://www.ncbi.nlm.nih.gov/pubmed/20186176

In KEEP México City, CKD prevalence was higher than the overall prevalence among participants with diabetes (38%) or diabetes and hypertension (42%). Most KEEP México participants were unaware of the CKD diagnosis, despite that 71% in KEEP México City had seen a doctor in the previous year. CKD is highly prevalent, underdiagnosed, and underrecognized among high-risk individuals in México. KEEP is an effective screening program that can successfully be adapted for use in México.

Just in case you’ve forgotten, KEEP is The National Kidney Foundation’s Kidney Early Evaluation Program.K.E.E.P.

As you can probably tell, current information is not that readily available. But I didn’t give up.

I found an abstract at ResearchGate that demonstrated that the homeless in Jalisco State (on the Western Coast and the home of many Mexican traditions) had a higher incidence than the poor for undiagnosed hypertension and diabetes in 2007. You can look at the exact numbers in this small study at http://www.researchgate.net/publication/260208642_Chronic_kidney_disease_in_homeless_persons_in_Mexico

Finally, something more recent! Brazilian Journal of Medical and Biological Research offered this information in their March 6, 2015 online issue.

BraziiIn Mexico, CKD prevalence among the poor is two-to three-fold higher than the general population, and the etiology is unknown in 30% of ESRD patients ….In Mexico, the fragmentation of the health care system has resulted in unequal access to RRT. In the state of Jalisco, the acceptance and prevalence rates in the more economically advantaged insured population were higher (327 per million population [pmp] and 939 pmp, respectively) than for patients without medical insurance (99 pmp and 166 pmp, respectively). The transplant rate also was dramatically different, at 72 pmp for those with health insurance and 7.5 pmp for those without it.

You may need some help understanding this, especially if you go to the source at http://www.scielo.br/scielo.php?pid=S0100-879X2015000500377&script=sci_arttext, so here it is. ESRD means End Stage Renal Disease, the point at which your body is no longer serviced by your kidneys and you need dialysis or a transplant. RRT is renal replacement therapy or, as we know it, dialysis or transplant.

And lastly from the Clinical Kidney Journal from January 20th of this year at http://ckj.oxfordjournals.org/content/early/2014/11/25/ckj.sfu124.full

In Mexico, the mortality on peritoneal dialysis is 3-fold higher among the uninsured population compared with Mexican patients receiving treatment in the USA, and the survival rate is significantly lower than the insured Mexican population….

Did you notice how often poverty and insurance were mentioned in the article (if you went to the websites)? I don’t know enough to make any conclusions, but it just might be that lack of money is at the root of such poor outcomes.

IMG_1398Meanwhile, between our honeymoon and a little jaunt to Las Vegas to meet cousins from New Hampshire when they come out to visit their mom who lives in Vegas, I am proud to say I am single handedly indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2… and enjoying it! Expect an announcement when the indexes are ready.

But, hey, why wait for announcements?  Starting this afternoon, there will be a giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Poor baby keeps getting ignored while I work on its younger twin siblings.

I’d better get back to those indexes.

Until next week,Book Cover

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

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

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

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

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

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

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

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

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

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

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

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

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

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

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

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

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

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

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

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

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

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

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

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

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

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

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

11990439_10204944411870363_4775265224050810062_n

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

IMG_1398

 

Until next week,

Keep living your life!

It’s the Funniest Thing…

You want to know about Chronic Kidney Disease brain fog?  Let me tell you about Chronic Kidney Disease brain fog.  I wrote a book about the Book Coverexperiences of the newly diagnosed CKD patient based upon my own experience – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Nice job on that one, Gail.

Four years later, I published The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2… with neither a topic listed for each blog nor an index. Well, how the heck are you supposed to find the information you’re looking for??? And it’s taken me this long to figure that out. Take it from me, CKD brain fog exists.

So, what is this CKD brain fog of which I speak? According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

“…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.”

You can read more at http://www.rodalenews.com/brain-fog.

It was www.naturopathconnect.com (a link that sometimes works, sometimes doesn’t) that offered me my first insight into how our kidneys and brain fog are connected.

bottled water“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

“Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly, or that you are dehydrated (have a low body water content).”

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  Okay, that’s logical.protein

The more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!

So how else can I alleviate my sometimes brain fog…especially since I’m working on three books at the same time as well as wanting to make some sort of index for the books mentioned above?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.

Dr. Isaac Eliaz who wrote the RodaleNews article in 2013 suggests several more natural remedies:

  1. Improve your diet and digestion.
  2. Detoxify.
  3. Support cell power.water to cells
  4. Control stress.
  5. Exercise.

I can agree with most of the items on Dr. Eliaz’s list no matter what’s causing the brain fog, but with CKD I’d talk over detoxing and/or taking supplements to support cell power with my nephrologist before actually following that advice.  Some nephrologists are dead (Yikes! Wrong word choice) set against detoxifying while others have a more eclectic approach to gentle detoxifying.

Supplements are a whole other story. There are so many different approaches here that I usually research whichever supplement I’m considering, then bring that research to my nephrologist to talk it over with him. Result: some supplements I agreed weren’t looking so good for me after our talk; others, he agreed were well worth a try.

Bahar Gholipour of Live Science at http://www.livescience.com/45502-foggy-brain-causes.html writes about other possible causes of brain fog. She includes multi-tasking, pregnancy, chemotherapy, menopause, and chronic fatigue syndrome among the causes. If any one of these causes exists in your life, maybe it’s not CKD brain fog you’re experiencing… or maybe it is… or maybe it’s a combination.  No one seems to be certain just what can cause brain fog, although I’m pretty comfortable with the explanations I’ve offered above.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.Kidney Arizona

Here’s a quick reminder about The National Kidney Fund of Arizona’s Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This consists of free blood and urine testing, which is evaluated onsite to assess for the risk of diabetes, heart and kidney diseases, and chronic disease management education, plus overall health assessment and one-on-one consultation with a physician for the screenees. A follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills is then offered.

Just like last week, one last thing: P2P’s Chronic Illness Buy & Sell page is on Facebook IMG_1398at https://www.facebook.com/groups/P2PBuy.Sell/.  It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

We Are Not Alone, Unfortunately

I have a friend who keeps telling me that Chronic Kidney Disease is not as widespread as I think it is and that I should stop scaring people by telling them it is. My usual way is to present facts, but not argue. In this case, I found myself arguing which made me wonder if I could be wrong.  Why protest so vehemently if I were sure I was right?

And that’s what today’s blog is about. First, you should know this has nothing to do with whether my friend is right, or if I am. It’s bigger than that… a lot bigger.

How big? Well, let’s start with the United States of America.  This diagram is from The National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-statistics/Pages/kidney-disease-statistics-united-states.aspx.

ckd

I don’t want to scare you too, but 2008 was seven years ago.  How much more has the incidence of new CKD cases risen since then?  Notice it’s the over 65 population with the dramatic rise in new cases. That’s my age group.  Maybe it’s yours, too.

[Reminder from the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: Medicare is the U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.]

This next bit of information is from the American Kidney Fund at http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf and shows us the numbers for 2012.  That’s getting closer to today, but it’s still three years ago.

Kidney disease is the 8th leading cause of death in the United States.

An estimated 31 million people in the United States (10% of the population) have chronic kidney disease (CKD).

9 out of 10 people who have stage 3 CKD (moderately decreased kidney function) do not know it.kidney interior

CKD is more common among women, but men with CKD are 50 more likely than women to progress to kidney failure (also called end-stage renal disease or ESRD)

Some racial and ethnic groups are at greater risk for kidney failure. Relative to whites, the risk for African Americans is 3.8 times higher, Native Americans is 2 times higher, Asians is 1.3 times higher, and Hispanics also have increased risk, relative to non-Hispanics.

I was diagnosed at stage 3, age 60, and had never heard of CKD before. This chart from the National Kidney Fund at www.kidney.org demonstrates the stages. The numbers outside the half circle represent the percentage of kidney function at each stage.

stages of CKD

That means I was one of the 9 out of 10 people who had stage 3 CKD and didn’t know it, even though I was a woman over 50 (actually, well over 50). Talk about being blind-sided!

What is itTime for another reminder – from my first book again: CKD is damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

Imagine being told you had an incurable disease.  What would your first thought be?  Mine was bizarre. I told the nephrologist that my daughter was getting married.  What I didn’t tell him because I was so shocked at this diagnose is that I thought it meant I was going to die very soon, but I couldn’t allow that because I wanted to be at her wedding.

By the way, that’s where my CKD Awareness activism comes from. I didn’t want any of us to think we were under threat of imminent death once we were diagnosed.  I’d rather explain how to get tested (Eighth leading cause of death in the U.S.) and – #SlowItDownCKD – slow down the progression of the decline of your kidney function.

Let’s take a look at over countries.  This is from Kidney Health Australia as of May this year at http://www.kidney.org.au/kidneydisease/fastfactsonckd/tabid/589/default.aspx

HOW MANY PEOPLE HAVE CKD?

  • Approximately 1.7 million Australians (1 in 10) aged 18 years and over have indicators of CKD such as reduced kidney function and/or the presence of albumin in the urine.
  • Less than 10% of the people with CKD are aware they have this condition.
  • This means over 1.5 million Australians are unaware they have indicators of CKD.

Unhealthy%20KidneyWHO IS AT INCREASED RISK OF CKD?

  • 1 in 3 Australians is at an increased risk of developing CKD.
  • Adult Australians are at an increased risk of CKD if they:
    • have diabetes
    • have high blood pressure
    • have established heart problems (heart failure or heart attack) and/or have had a stroke
    • have a family history of kidney disease
    • are obese (Body Mass Index BMI – more than or equal to 30)
    • are a smoker
    • are 60 years or older
    • are of Aboriginal or Torres Strait Islander origin

Notice their statistics are similar to ours, but there are two more are higher risk groups.

IMG_1398

“In 2013, nearly one million people died from chronic kidney disease. While this represents less than 2 percent of all deaths globally, it is a 135 percent increase from the number of chronic kidney disease-related deaths in 1990.

While the global increase in chronic kidney disease-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of chronic kidney disease-related deaths among people ages 15 to 49 since 1990.”

The quote above is from Humanosphere at http://www.humanosphere.org/science/2015/01/visualizing-the-rise-of-chronic-kidney-disease-worldwide/ and is related to The Global Burden of Disease Study.

So you see, we are not alone.  Nor are we living under a death sentence. We can spread awareness of Chronic Kidney Disease and educate those diagnosed as to how to slow down the progression of the disease.

Kidney ArizonaTalking (I know, I know, writing) about this, The National Kidney Fund of Arizona will be holding a Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This includes free blood and urine testing, which is evaluated onsite using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Oh, one last thing. Have you heard about P2P’s Chronic Illness Buy & Sell page on Facebook at https://www.facebook.com/groups/P2PBuy.Sell/ ? It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

What If…

Have you ever become anxious about the unknown, specifically the future? You are not alone.  Since you have Chronic Kidney Disease, you are so the opposite of not being alone. You have a progressive disease, one which affects two of the most important organs your body possesses.

thCAQ0P7T3Most days, I wonder if I’ll stay at Stage 3A for the rest of my life or – despite my best efforts – I’ll end up on dialysis and need a transplant anyway.  It’s one of those things I try really hard not to dwell upon.

Whoops!  I did it again.  Let’s backtrack a bit so we all know what I’m writing about. I went back to the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definition of Chronic Kidney Disease (CKD).Book Cover

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

According to DaVita.com, Stage 3A means:

A person with stage 3 chronic kidney disease (CKD) has moderate kidney damage. This stage is broken up into two: a decrease in glomerular filtration rate (GFR) for Stage 3A is 45-59 mL/min and a decrease in GFR for Stage 3B is 30-44 mL/min.

There’s a wealth of Stage 3 information at http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-3-of-chronic-kidney-disease/e/4749.

As usual, one definition leads to the need for another, in this case GFR.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through Glomerulus-Nephron 300 dpi jpgthe glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.

Uh-oh, now we need to define both dialysis and transplant. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo

Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs.

There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.

As for transplant, WebMD at http://www.webmd.com/a-to-z-guides/kidney-transplant-20666 tells us

kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney.

I should mention that while there are transplants from both living and cadaver donors, both will require lifelong drugs to prevent rejection.faq_kidney_transplantation

All right, now that our background is in place, let’s deal with that anxiety.  Why worry (ouch!) if you have anxiety and you have CKD?

I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for help here.

Digital Cover Part 1In the August 16, 2012 post, I included this.

Poor mental health linked to reduced life expectancy

There  is  a  possibility  that  mental  health  problems  may  be  associated with  biological  changes  in  the  body  that  increase  the  risk  of  diseases such as heart disease.

In  this  study,  approximately  a  quarter  of  people  suffered  from  minor symptoms  of  anxiety  and  depression,  however,  these  patients  do  not usually come to the attention of mental health services. The authors say that  their  findings  could  have  implications  for  the  way  minor  mental health problems are treated.

The information was originally published on PyschCentral.com at http://psychcentral.com/news/2012/08/01/even-mild-mental-health-problems-linked-to-reduced-life-expectancy/42487.html

Not to be too morbid, but our life expectancy may already be reduced due to our Chronic Kidney Disease. Now we’re reducing it even further with our anxiety… even though we certainly may have cause to be anxious?

Time to deal with that anxiety.  But first, what exactly is anxiety?

The Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Anxiety is fairly explicit about what it is.

Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient’s personal history and memory, and the social situation…. a large portion of human anxiety is produced by anticipation of future events.

Nothing I want any part of! So how to I reduce my anxiety about my CKD so that I don’t further reduce my life expectancy?

I was so taken with Barton Goldsmith, Ph.’s advice that I wanted to post it all, but that would make this week’s blog far too long.  You can read what I omitted at https://www.psychologytoday.com/blog/emotional-fitness/201205/top-10-tips-reduce-anxiety

  1. If you are prone to anxiety you have two choices .Give in to it or learn to live with it.support
  2. When you wake up tomorrow start doing something right away, and keep busy all day. Taking action by doing something, almost anything, will help you work through your anxiety.
  3. Focus your attention on where the feeling of anxiousness is in your body and keep your attention there until the feeling moves or dissolves.
  4. Anxiety will grow if it’s not directed into some positive action.Find someone who needs you and lend him or her a helping hand.
  5. Talking to someone is one of the best ways to overcome your anxiety.
  6. Exercise is another good way to keep from letting your fears overwhelm you.
  7. Start a gratitude journal; write down three to five things that you are grateful for. Do this every night, it works and it’s very easy.
  8. The opposite of fear is faith.When you are anxious, a great way to get out of it is to find some faith. Believing that things will get better is sometimes all it takes to make it better.
  9. If watching the news fills you with anxiety – turn off the TV!
  10. Courage is not the absence of fear, but taking action in spite of fear.

Now it makes sense to me that Bear and I have a gratitude jar into which we drop a slip of paper containing one thing that made each of us happy each day. Now it makes sense to me that I look for ways to help others.  I think I’ve been warding off my own anxiety without knowing it.

Talking about not knowing, have you seen P2P’s Chronic Illness Awareness Buy and Sell page on Facebook?Part 2

Until next week,

Keep living your life!

Sexy!

IMG_2867Sometimes as you age, you find that sex is not that important… or, at least, the hanging from the chandeliers kind isn’t. *sigh* Add to the age factor that you and/or your partner may have physical limitations or be taking medication that impedes indulging as often and as fervently as you used to. *sigh*sigh* Now add your Chronic Kidney Disease to this equation. *sigh*sigh*sigh*

Does this mean you’re doomed to a life of fervent hugging and kissing and no more? Not at all, my friends, not at all.

Let’s take a look at what I had to say (oh, all right, write) about the glorious, yet somehow still taboo, topic of sex for CKD patients. Those of you Book Coverwith a print copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will find this begins on page 100. If you have the digital version, do a word search for ‘sex.’ It’ll be the third finding on the search.

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

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body.  Or maybe it’s leaky blood vessels.  Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones. Possibly, you’re tired from CKD induced anemia.  I’ve just mentioned a few possibilities. The silver lining is that there are almost as many treatments as there are causes.

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

blood pressure 300dpi jpgThe usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. There are other treatments not mentioned here….

Sometimes, the treatment is as simple as counseling and the cessation of smoking and alcohol.  Hmmmm, as CKD patients, we’ve already been advised to stop smoking and drinking.  This is another reason for male CKD patients to do so.

Women with CKD may also suffer from sexual problems, but the causes can be complicated.  As with men, renal disease, diabetes and hypertension may contribute to the problem.  But so can poor body image, low self-esteem, depression, stress and sexual abuse [It’s become clear since the book was published in 2011 that men also may suffer from these conditions]. Any chronic disease can make a man or a woman feel less sexual.

Some remedies for women are the same as those for men.  I discovered through my research that vaginal lubricants and technique, routine, and environment changes when making love, warm baths, massage, and vibrators can help. Again, there are other, more medical treatments.

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed.  I was obsessed with my [e.g. premature and unnecessary] revulsion of dialysis and needed to hear over and over again that it was a couple of decades too early to worry about this.  I was also tired and didn’t know why, just worried that I would always need an afternoon rest period.… Then I discovered that vaginal strep B can occur in women over 60 with CKD.  Luckily for me, if you catch it and treat it early on, it’s just an infection that you take antibiotics to kill.  If you don’t treat it early, you just may be looking at some serious consequences.

Since we’re in the early stages of CKD, chances are the sexual problem is not physical other than being tired.  I never talked to my nephrologist about sex because I felt there was no reason to, and I had a partner who was willing to work around my rest periods until I had the energy.  But, I sleepam convinced, that if I ever do feel I have reason, I would talk to him. I’m older and prefer women doctors for the most part especially when it comes to private matters but this man is the specialist who knows far more than I do about this disease I am struggling to prevent from progressing.  There is a point when you realize your life is more important than not being embarrassed.

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.  And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful.  You’ve got to keep in mind that some CKD patients never have sexual problems, no change in frequency and depth of desire and no impairment in the act itself.  This is not the time to make yourself the textbook case of the CKD patient who suffers sexually because of her disease. The best advice I received in this area was make love even if you don’t want to.  Magic.

I wrote that five years ago and very little has changed. You’ll see that I added an update in brackets and omitted outdated information.  Otherwise, my advice is the same.  But keep in mind that I am not a doctor and have never claimed to be one. Speak to your nephrologist if you feel your sex life is being hampered by your CKD.

Check The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 to see if they have more information about sex and our disease.IMG_1398

Wow!  I keep the blog to about 1,000 words and I’m already over.  It’s just as well, we’re off to find some delicious candles and add some sexy music to the iPod… just in case we’re in the mood sometime soon, you understand.

Until next week,

Keep living your life!

Stop Stressing!

sorry faceI am retired.  I get up when I want. I go to bed when I want. I stay in when I want. I go out when I want. I have no deadlines except those I impose on myself. But people I love do have stress in their lives: jobs, relationships, mental health…and I am stressed by their stress.

What, in heaven’s name, is this stress doing to my kidneys since I have Chronic Kidney Disease?  It is further reducing my already compromised immune system is what it’s doing.  Let me tell you why I don’t need that and neither do you.

Flashback to Alaska about a month ago. Bear was in the throes of cellulitis. It was about 60 degrees and raining lightly. We needed to return the knee scooter to the rental company before we left the state, which meant I stood outside in the rain for over 40 minutes waiting for them to show up.  They didn’t. I straightened that out and we ended up racing to the airport to be there two hours before our flight, as required. Then Bear felt ill, so we sat in the ice cold military waiting room for over 12 hours until our flight.  There was no sleep that night.  Are you starting to get the picture?IMG_1320

The result was a plain, old ordinary upper respiratory infection that took my already compromised immune system three weeks to heal from.

Let’s do the usual backtracking here and take a look at how Chronic Kidney Disease compromises your immune system in the first place. According to WebMD’s explanation of what stress can do to anyone, CKD or not, at http://www.webmd.com/balance/stress-management/effects-of-stress-on-your-body,

Stress that continues without relief can lead to a condition called distress — a negative stress reaction. Distress can lead to physical symptoms including headachesupset stomach, elevated blood pressurechest pain, and problems sleeping. Research suggests that stress also can bring on or worsen certain symptoms or diseases.

Make no mistake. Stress can be a killer for those with CKD.  Did ‘elevated blood pressure’ from the explanation above jump out at you?  A large number of us were already taking blood pressure lowering medication before we developed CKD.  Another large number who were not had blood pressure lowering medication prescribed for them by their nephrologists.  Why?

blood pressure 300dpi jpgLet’s go back to basics here. In the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I defined hypertension (high blood pressure) as

A possible cause of CKD,… , a risk factor for heart disease and stroke, too.

Just below that definition is the one for hypertensive nephrosclerosis:

Kidney damage caused by HBP (high blood pressure).

As a reminder, nephron refers to the kidneys and sclerosis to hardening of the – in this case – organ.

Dirty words! So my already high blood pressure MAY have been part of the cause of my CKD which compromised my immune system and then stress further compromised it.  Oh my.

Wait a minute. Let me grab this thought. Got it! How does the immune system work anyway? The National Institutes of Health was helpful here.Book Cover

The immune system protects the body from possibly harmful substances by recognizing and responding to antigens. Antigens are substances (usually proteins) on the surface of cells, viruses, fungi, or bacteria. Nonliving substances such as toxins, chemicals, drugs, and foreign particles (such as a splinter) can also be antigens. The immune system recognizes and destroys substances that contain antigens (Me here: the body does already contain antigens of its own.) ….The immune system includes certain types of white blood cells. It also includes chemicals and proteins in the blood, such as antibodies, complement proteins, and interferon. Some of these directly attack foreign substances in the body, and others work together to help the immune system cells.

There’s a great deal more of such information at http://www.nlm.nih.gov/medlineplus/ency/article/000821.htm

Keep in mind that our kidneys filter our blood.  If our kidneys are damaged, our blood filtration is not at 100%, including those ever important Blood Oxygen Cycle Picture 400dpi jpgwhite blood cells. Ever notice how high your white blood count is when you have an illness?  This is why. You might also look for your leukocyte esterase level on your blood test results since those indicate the presence of white blood cells.

This is so complicated, but then, isn’t everything?  Whatever happened to black and white answers, she whined winningly.

So we have already poorly filtered blood and further reduced blood flow (That’s what hypertension is.) caused by stress. Wonderful, just wonderful. Ugh! Obviously, this is something to be avoided, if possible.  But how?

As CKD patients, we can stop stressing ourselves about the following, those things that common – but misguided – knowledge tells us is our disease worsening when they actually may be anxiety produced:

  • Extra Urination Anxiety can actually cause more frequent urination. When you experience anxiety, the part of your brain that controls the withholding urination actually slows down, because anxiety requires resources to be sent to other parts of your brain. This can lead to concerns over your renal health, although generally nothing is wrong.
  • Lower Back Pain Lower back pain is also very common with anxiety. Lower back pain comes from severe stress and tension, and yet it’s bad backassociated with some conditions that affect the kidneys as well which can have many people worried about their kidney health.
  • Life Experiences Anyone that suffers from anxiety and has had a friend or family member diagnosed with a terrible kidney condition is at risk for developing anxiety over the idea of poor kidneys. Anxiety can turn life experiences into very real concerns, and so kidney health concerns are one of the issues that can come up when you see it in others.
  • Urine Color Urine color is another issue that can cause anxiety. Many people check their urine color for diseases habitually, and every once in a while the color of a person’s urine may be very different than what they expect. This can create concerns that the urine color changes are due to kidney problems.

Many thanks to Calm Clinic at http://www.calmclinic.com/anxiety/kidney-problems for these reassuring words.

IMG_1398

Here’s hoping you can find more ways to reduce any existing stress in your life.  Look hard, we all have stress of some kind of another.

Until next week,

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea – with apologies to lyricist Harold R. Atteridge

I’ve mentioned a time or two (Oh, okay, much more than that.) we’d been to Vancouver and Alaska recently on what was supposed to have been our over two year delayed honeymoon.  It was soon downgraded to our ‘woebegone vacation.’ I never told you why. IMG_1320

It was so very unfair. Bear has always wanted to take me to see Alaska. He’d been sent there as a young soldier. Obviously, the beauty of the state impressed him. And he’s been talking to me about taking a cruise for the entire time I know him. Having lived on islands my whole life until I moved to Arizona, ferries were enough of ‘cruising’ for me, but my love wanted to go on one so badly. I was the one who wanted to see Vancouver – simply because I’d never been there – so that’s why we sailed from there.

What happened was unexpected…and scary. On our second day in Vancouver, it became clear Bear couldn’t walk and was in pain. We just figured it was some sort of inflammation where he’d had foot surgery two years ago. This had happened before. We got a knee scooter (People in Vancouver thought it was a new form of transportation.), he took pain meds, and we figured we had it covered. So we boarded our cruise ship.

That may have been a mistake. Two days into the cruise, Bear started running a high temperature and was in agony.  Off we went to sick bay as a cruisecruise ship’s infirmary is commonly called. That’s where we discovered he had a dangerous infection called cellulitis that was rapidly taking over his leg. It had already risen from his foot to above his knee.

According to WebMD at http://www.webmd.com/skin-problems-and-treatments/tc/cellulitis-topic-overview

Cellulitis is a common skin infection that happens when bacteria spread through the skin to deeper tissues. Most cases are mild and last several days to a couple of weeks. But cellulitis can sometimes progress to a more serious infection, causing severe illness that affects the whole body (sepsis) or other dangerous problems.

It looked like he was heading toward sepsis. Bear was ordered to stay in bed except for the twice a day he returned to sick bay for IVs (That’s an intravenous drip feed: a needle is inserted into your vein via the arm and whatever is in the bag attached to that needle is dripped into your vein.) of Rocephin.

Here’s when Bear’s cellulitis treatment becomes relevant to Chronic Kidney Disease patients. The generic name for Rocephin is ceftriaxone it may be harmful to the kidneys.  It’s a powerful antibiotic used

to treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis.

You can read more about it on Drugs.com at http://www.drugs.com/mtm/ceftriaxone-injection.html

The Skeptical Scalpel, a doctor’s blog at http://skepticalscalpel.blogspot.com/2012/10/is-normal-saline-bad-for-kidneys.html, offered some insight about the saline solution Bear was given to rehydrate him. Again, I’m looking at this solely from the CKD patient’s viewpoint:

Is normal saline bad for the kidneys? Yes.Skeptical Scalpel

To be fair, in the particular blog I viewed, it was “renal failure in critically ill ICU patients” that was being referred to in connection with saline drips.

Ketorolac Tromethamine was also being administered. What’s that you ask?

Ketorolac is a nonsteroidal anti-inflammatory drug (NSAID) similar to ibuprofenindomethacinnaproxen, and many others. Ketorolac blocks prostaglandin synthesis. Prostaglandins have many effects in the body including their role in pain and inflammation.

It’s a NSAID, boys and girls, something we – as CKD patients – are warned off.  Thanks are in order to http://www.medicinenet.com/ketorolac_tromethamine-ophthalmic/article.htm for the definition.

All the while, his blood pressure was being monitored. Of course, an x-ray was taken to see if there were a break and two blood tests were administered two days apart.  All good medical practice.blood draw

On the second day of onboard treatment, Augmentin, another antibiotic, was added to Bear’s treatment. This is safe for CKD patients… unless your kidney function is less than 30%. Then the dosage needs to be adjusted. The manufacturers themselves offer this information.

It took four days for Bear to be well enough for the IVs to be discontinued. He was worn out. The cruise was a bust, but he was getting better.

We left the ship with a firm admonition from the doctor to see Bear’s orthopedist (who referred us to our pcp since this was not a surgical problem) as soon as we got home and enough antibiotic to last until we left Alaska. Of course, our doctor had to be on vacation herself just then, so Bear saw someone who didn’t know him except from reading his medical records.

Being one smart man and remembering that the ship’s doctor had said he was worried that the infection may have settled around the hardware that was inserted during his previous foot surgery, Bear figured foot = podiatrist.  It’s a good thing he did. She immediately sent him for an ultrasound for what she feared might be a blood clot at the site of the painful bump on his leg from one of the two times he fell. Not being able to walk can be tricky on a rolling ship.  Luckily, there wasn’t one.Bear's foot

We had to face the obvious. Bear was going to have to quit his dream part-time job in a wood workers’ store. But wait! One door closes and another opens. Now he can work full time in his shop.  He can rest whenever his foot starts to bother him and then just put his shop boots back on and go back to work. He can also not work in the shop if he so chooses… and he doesn’t have to call in sick.

The point of the blog is that while anyone can mysteriously become ill at any time, the rules are different for us as CKD patients. Pay attention to your compromised immune system and what drugs your doctors are trying to give you.  If I don’t recognize the drug, I run it by my wonderful nephrologist who never fails to respond to my texts quickly.

You know, this blog started as publicity for my books.  Now I become so involved with whatever the topic is that I often forget that. I hope you don’t. As much as I’d like to sell you some books, I also want you to know you can borrow them from the Kindle Owners’ Lending Library for free. That’s at Amazon.com. You can also ask the librarian at your local brick and mortar library to order my books.

Book Cover

Until next week,

Keep living your life!IMG_1398

A Connection You Can Do Without

McKee You know how you run into people you used to know every once in a while. That’s exactly what happened for me… but we discovered we had chronic disease in common. That’s why this one’s for Jeanne, a former colleague who is highly involved in spreading awareness of Scleroderma, just as I am of Chronic Kidney Disease.  Just as we have a connection, so do Scleroderma and Chronic Kidney Disease. (Cool way to slide into today’s topic, isn’t it?)

According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/definition/CON-20021378, scleroderma is

a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, handsinternal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.

Did you catch “such as blood vessels” and “internal organs” in that definition? And that there’s no cure? Are you beginning to see the connection?

Book CoverOn page 129 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I’ve defined an ACE inhibitor as “A blood pressure medication that lowers protein in the urine if you have CKD.”

So ACE inhibitors are helpful in CKD, but – as you’ll soon read – harmful in Scleroderma. We’ve probably all been in the position of having to choose the least harmful treatment, rather than the most helpful and here it is again.

The Scleroderma Care Foundation at http://www.sclerodermatt.org/articles/better-health/204 tells us:

Exposure to angiotensin-converting enzyme inhibitors prior to the onset of renal crisis in patients with Scleroderma increases the risk of death, according to 1-year findings from the prospective observational International Scleroderma Renal Crisis Survey.

I went to Scleroderma.Org for this chart to help us understand which type of Scleroderma affects the kidneys.types-scleroderma-chart

We can see that Systemic scleroderma is the one that we, as CKD patients, need to pay attention to.  The following is also from Scleroderma.Org.

Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body.

I’m sure you caught “kidneys” in that definition.

Well, what about symptoms?  No one seems to know what causes Scleroderma, but maybe there’s more information about the symptoms. WebMD at http://www.webmd.com/arthritis/understanding-scleroderma-symptoms had this one covered.

  • Swelling, stiffness, or pain in the fingers, toes, hands, feet, or face
  • Puffy skin
  • Discolored skin
  • Fingers and toes that react strongly to cold — they may look white and hurt. This is called Raynaud’s phenomenon.
  • Red spots on the fingers, palms, face, lips, or tongue. These are called telangiectasias. They happen when tiny blood vessels are widened.
  • Ulcers or sores on fingertips, knuckles, or elbows
  • Fatigue or feeling tired
  • Shortness of breath, caused by heart or lung damage
  • Problems digesting food — for example, heartburn, trouble swallowing, or food moving slower than usual through your system

Some of the latter symptoms may be the same as those for CKD, but this does not automatically mean you have CKD…or Scleroderma for that chartmatter.  See your doctor to be tested for each if you have CKD and think you’re developing Scleroderma or vice-versa.

Now there’s another question.  What is the testing for Scleroderma? Our old friend Lab Tests Online at https://labtestsonline.org/understanding/conditions/scleroderma/start/3 offered a complex answer to this question.  Below are the usual tests, but there are groups of others to determine which organs are affected, the severity of the disease, the type of Scleroderma, etc.

A battery of tests is performed to detect the presence or absence of autoantibodies that are generally associated with the diagnosis of scleroderma. They include:

So now we know what Scleroderma is, how it can be determined if you have it, what type you have if you do, and how it may be connected to CKD. By the way, to date, there is no way of preventing this disease.

Now the biggie.  What can you do about it? Time to check with MedicineNet at http://www.medicinenet.com/scleroderma/page4.htm#what_is_the_treatment_for_scleroderma

Treatment of scleroderma is directed toward the individual features affecting different areas of the body.

Aggressive treatments of elevations in blood pressure have been extremely important in preventing kidney failure. Blood pressure medications, particularly the angiotensin converting enzyme (ACE) inhibitor class of drugs, such as lisinopril, are frequently used.

scleroderma-systemic-sclerosis_3See what I mean about choosing the medication that prevents the most harm rather than one that does the most good?

While research is ongoing, there are support groups for Scleroderma patients just as there are for CKD patients, although I wasn’t able to find one for sufferers of both diseases. The Scleroderma Foundation at http://www.scleroderma.org/site/PageServer?pagename=chapter_locator has an interactive map with addresses of in person support groups. Online, there’s Dailystrenth.org at http://www.dailystrength.org/c/Scleroderma/support-group, as well as a Facebook page at https://www.facebook.com/pages/Scleroderma-Support-Group/498039106944584. Of course there are others, but these might be the best places to start if you’re looking for support groups.

I am sitting here writing my blog in the midst of a post vacation cold that’s taking three weeks to run its course. Ah, the joys of having a compromised immune system (She wrote sarcastically.). After writing this blog, I’m feeling very lucky that this is all I’m dealing with as a result of my CKD.IMG_1398

Until next week,

Keep living your life!

Do I or Don’t I?

cruiseThree weeks ago, Bear and I embarked on my very first cruise.  For years, he’s been asking me to take a cruise.  For years, he’s been asking me to go to Alaska.  For years, he’s been asking me to ride on the Alaska Railroad. This is my second anniversary gift to him.

What makes it even better is that friends and family came together to take care of the wondrous cancer-free Bella in our home for the whole time we were away. There were people in and out at all times of the day and night to be with her.IMAG0269 (1)

Which brings us to today’s topic. Months ago, I wrote about a test my nutritional counselor suggested I take in order to take care of myself. I was warned it would be six weeks or more before I received the results of this blood draw. They’re finally arrived.

The test is Genova Diagnostics’ NutrEval for FMV amino acids. What was tested were antioxidants, B vitamins, minerals, essential fatty acids, digestive support, other vitamins, and amino acids. Pretty comprehensive, huh?

GenovaSince I need to research how Chronic Kidney Disease interplays with what supplements were recommended for me, I thought I’d share the ‘high need’ ones with you. First on our hit parade is in the antioxidant category. I’m glad I don’t need CoQ10 since that was in the normal range. Now I know why I ignore those tablets in the pharmacy. Vitamin A/Carotenoids, Vitamin C (Uh-oh, must have gone overboard avoiding this after the kidney stones), Vitamin E/Tocopherols were all in the borderline range, where I’ll let them stay for now.

a-Lipoic Acid, which is the same as alpha lipoic acid, however was in the high need range… as in a suggested dosage of 200 mg. Apparently the main food sources of this are:

organ meats which are high in phosphorouscpy broccoli.2

spinach which is one of the highest potassium foods

broccoli which I eat like it’s going out of style.

Lesser food sources are tomatoes, peas, Brussels sprouts and brewer’s yeast.

Davita.com has this to say about phosphorous. You can read more about it at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/high-phosphorus?-investigate-the-cause-when-you-have-kidney-disease/e/8003

Phosphorus is the second most common mineral in the body after calcium and is needed for good health. However, people with chronic kidney disease (CKD) have difficulty eliminating extra phosphorus from their bodies.

I’ve only got three servings of vegetables a day on the renal diet so I don’t want to waste them on high potassium choices or vegetables I don’t care for.  As for organ meats, I rarely eat red meat and don’t like the taste of these (Funny how I can remember how they tasted when I’ve lost so many other memories, isn’t it?). I can understand the deficiency.

Now this is peculiar. In researching this, I came across http://www.AlphaLipoicAcid.com which clearly states:

thiaminIf you’re deficient in thiamine (vitamin B1), a condition often associated with alcoholism, you shouldn’t take alpha lipoic acid.

The latest sources listed on their site are from 2007. That’s too long ago.

While I don’t drink, the NutrEval also showed I was deficient in and had a high need for Thiamin – or B1 – to the tune of 50 mg. I’d have to find another source to see if I can take this supplement.

I went to WebMD which is usually helpful to me. Hmmm, their latest source is 2012 but the site warns about taking this supplement with diabetic medication. It’s never easy, is it?

I seem to be going in circles here, so I’ll try this another way. According to my NutrEval Interpretation,

a-Lipoic Acid plays an important role in energy production, antioxidant activity (including the regeneration of vitamin C and glutathione), insulin signaling, cell signaling and the catabolism of a-keto acids and amino acids.

Mind you, this was taken from the Interpretation At-A-Glance for the patient.  The physician’s is even more detailed. I just looked at seven differentIMG_1229 sites, some selling this supplement, and read parts of three different books. Each one declares that a-Lipoic Acid should not be taken if you have a thiamine deficiency.

So do I take the supplement or not? Since I’m still worried about taking it when it’s suggested I not take it while being B1 deficient, I will send the physician report to my nephrologist.

Let’s flip this baby and see if I get anywhere researching thiamin deficiency.

Oh, my goodness!!!! I went to the Mayo Clinic at http://www.mayoclinic.org/drugs-supplements/thiamine/interactions/hrb-20060129 only to discover that thiamin and Metformin – which I take for pre-diabetes – don’t mix.

Caution is advised when using medications that lower blood sugar. People taking drugs for diabetes by mouth or insulin should be monitored closely by a qualified healthcare professional, including a pharmacist. Medication adjustments may be necessary.

Furthermore, there’s a caution on the site that supplements are not approved nor regulated by the FDA. All that’s offered are approximate dosages by age and length of duration that are LIKELY acceptable.  I’m becoming very uncomfortable with this.

So I am deficient in a-Lipoic Acid – whose supplementation may also affect my blood glucose – but am urged not to take it if I have a thiamin deficiency. Then I am urged not to take thiamin supplementation since it may interfere with the Metformin.  Or is this a hearty suggestion to stop the Metformin?  Sorry, folks, this is something for my nephrologist to help with.  I guess we’ll just have to wait until I can contact him.

It’s not life threatening and we were in Vancouver for five days before boarding the ship which gave me a lot of time to ruminate. I’m wondering if this test is the deciding point between alternative medicine and my nephrologist’s kind of medicine.

VancouverShould push come to shove, I’m not ready to leave my nephrologist and rely on alternative medicine. I’ve done well at keeping my CKD at stage 3A for the last eight years… with the help of my nephrologists. I’m not saying that you should do as I do, simply that this would not be my choice and I’d urge you to think carefully if it’s your choice.

I’m going back to looking at our pictures of Alaska’s Inside Passage.

Until next week,

Keep living your life.Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

I Saw It!

I am so excited!  I watched my kidneys produce urine in live time.  Location of Kidneys

I know, I know: slow down.  Here’s the back story. Remember I wrote about having a bladder infection for the first time in about five years? During consultation with my primary care physician (PCP) about which antibiotic was safe for me, she pointed out that I had taken Ciprofloxacin before with no ill effects and that it was kidney safe. This is a  medication used to kill the bacteria causing an infection.

Okay, I felt comfortable taking it again without speaking to my nephrologist.  However, the 250 mg. twice a day I ingested for five days didn’t do the trick. I waited one day after finishing the prescription and then tested my urine with the same test strips I wrote about in May 25th’s post…and got the same positive results for leukocytes: elevated, which meant infection.

bladderBack to my PCP for more testing. After an in office urine test also showed leukocytes, Dr. Zhao ordered the urine sample be sent to the lab to be cultured, and both a renal and a bladder ultrasound for me. Both the ultrasounds came back normal. She is a very thorough doctor, especially when it comes to my Chronic Kidney Disease or anything that might affect it.  It is possible for infection to move up to the kidneys from the bladder. Luckily, that didn’t happen in my case. Here are the urine culture results from the lab which arrived well into my second regiment of Cipro:

Culture shows less than 10,000 colony forming units of bacteria per milliliter of urine. This colony count is not generally considered to be clinically significant.

Okay, so here I was taking 500 mg. twice a day for my second regiment of antibiotics.  This time I had checked with my nephrologist because of the doubled dosage and taking the second regiment so soon after the first. He gave his approval.

Cipro, like most other drugs, may have side effects.  I hadn’t realized why I was so restless and anxious.  Those are two of the not-so-often-encountered side effects, but I have nothing else to pin these strange (for me) feelings on. My uncustomarily anxiety was causing dissention in the family and interfering with my enjoyment of the life I usually love. After digging deep into possible side effects, I see why.  The funny thing is that all I had to do was read about these possible, but not likely, side effects to feel less anxious and restless.  I had a reason for these feelings; they sad facewould soon dissipate. I could live with that time limited discomfort.

Before taking the ultrasounds, I needed to drink 40 oz. of water – yep, almost two thirds of my daily allowance – and hold it in my bladder for an hour. I started joking with Wendy, the ultrasound technician, as soon as I got into the room.  You know, the usual: Hurry up before I float away, I can’t cross my knees any tighter, that sort of thing.

She was a lovely person who responded with kindness. When she realized I was super interested in what was on the screen, she started explaining what I was seeing to me and turned the screen so I could see what she was seeing. The bladder ultrasound was interesting… and colorful.

But the kidney ultrasound was magic!  I watched as my kidneys produced urine and the urine traveled down to the bladder.  This was real.  This was happening inside my body. And I was watching it in real time.

What is itIn What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I discuss one of the jobs of the kidneys:

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

I was watching the extra water move from my kidneys to my bladder!  I was probably watching the blood being filtered in the kidneys, too, but that was not as clear to me.

Well, what do you know?  It seems the National Kidney Foundation is running a campaign to make the public aware of that, too.  This is what the foundation has to say about the campaign.

The National Kidney Foundation (NKF) has launched a cheeky campaign to promote kidney health and motivate people to get their urine screened.

EverybodyPees is an irreverent, educational animated music video plus a website (www.everybodypees.org) that focuses on the places people pee. EverybodyPees_PostersV3_Page_5The number one goal of the campaign is to link one of the kidneys’ primary functions — the production of urine — to overall kidney health. Pee is important because urine testing can reveal the earliest signs of kidney damage.

“Our research has shown that half of Americans don’t understand that healthy kidneys are responsible for creating urine,” said Kevin Longino, interim CEO of the National Kidney Foundation. “Urine also happens to hold the key to catching kidney disease, especially among the 73 million Americans who are at risk. The message may be unconventional, but it is educational and actionable – get your urine checked for kidney health.”

Kidney disease is at an alarming proportion in the United States. Over 26 million American adults have kidney disease and most don’t know it.  More than 40% of people who go into kidney failure each year fail to see a nephrologist before starting dialysis — a key indicator that kidney disease isn’t being identified in its earliest stages.Healthy%20Kidney

“People aren’t getting the message that they can easily identify kidney disease through inexpensive, simple tests,” said Jeffrey Berns, MD, President of the National Kidney Foundation. “Keeping kidneys top-of-mind in the restroom will hopefully remind people that they should be asking about their kidneys when they visit their healthcare professional, especially if they have diabetes, high blood pressure, a family history of kidney failure, or are over age 60.”

NKF-logo_Hori_OBEverybodyPees is NKF’s first attempt to tackle a serious national health problem from a relatable, consumer angle. The campaign was produced in collaboration with Publicis LifeBrands Medicus.

“We are flipping public health education messaging on its head –using humor to get our message across and foregoing scare tactic messaging” Longino said. “We’re going out on a limb with our core message on urine testing, but we need to take risks if we’re going to alter the course of kidney disease in this country.”

Being who I am, I prefer ‘urine’ to ‘pee,’ but that wouldn’t be half as catchy, would it?

Consider The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 as bathroom reading while you’re urinating – uh, peeing – so we can get some more reviews. And always, let us know about any new CKD books you discover.

Until next week,Part 2Digital Cover Part 1

Keep living your life!

 

What a Weird Dream

Part 2I woke up today realizing I’d been dreaming about my bladder.  Sometimes that’s a somatic clue to wake up and empty it, but I’d done that already. Hmmm, was I being told to look into the different aspects of the bladder?  Oh, maybe the dream DIGITAL_BOOK_THUMBNAILwas pointing toward the connection between Chronic Kidney Disease and the bladder. By now, you’ve probably realized everything in my world points to CKD.

To my way of thinking, if I were going to dream of anything CKD related, I should have been dreaming about the photos of you reading one of my books in a weird place that you’ve posted on SlowItDownCKD’s Facebook page to win a free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. That would make sense, wouldn’t it?

What is it

But, no.  It was the bladder.  Okay, then, let’s take a look at the bladder. As usual, we’ll start at the beginning with a definition. Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following:

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

Notice the mention of the kidneys. Notice also the urine flows from the kidneys to the bladder, not vice versa.  Doesn’t help much to explain the dream.  I wonder if a bladder infection might explain more.

Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….

Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.kidney location

Oh, so repeated bladder infections can lead to kidney infections, although rarely.  Maybe we’d better take a look at the symptoms of bladder infections… just in case, you understand.

This was the point in my research that I once again appreciated how user friendly, yet detailed, the Mayo Clinic is. The following information may be found at http://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/basics/symptoms/con-20037892

Part of urinary tract affected      Signs and symptoms

Kidneys (acute pyelonephritis)   Upper back and side (flank) painurinary-tract-infection-uti-picture

High fever

Shaking and chills

Nausea

Vomiting

Bladder (cystitis)                            Pelvic pressure

Lower abdomen discomfort

Frequent, painful urination

Blood in urine

Urethra (urethritis)                        Burning with urination

Let’s change direction here and take a look at pyelonephritis since that involves the kidneys.

at http://www.niddk.nih.gov/health-information/health-topics/kidney-disease/pyelonephritis-kidney-infection/Pages/index.aspx has this information.

Pyelonephritis is caused by a bacterium or virus infecting the kidneys. Though many bacteria and viruses can cause pyelonephritis, the bacterium Escherichia coli is often the cause. Bacteria and viruses can move to the kidneys from the bladder or can be carried through the bloodstream from other parts of the body. A UTI in the bladder that does not move to the kidneys is called cystitis.

However, the site carefully explains that a bladder infection or a structural abnormality that causes urine to flow back into the kidneys are the two most usual causes.  So we’re back to looking at bladder infections after this little detour.

Location of KidneysFor information about what might cause a bladder infection, I shot over to Healthline at http://www.healthline.com/health/bladder-infection#Overview1

Bladder infections are caused by germs or bacteria that enter through the urethra and travel into the bladder. Normally, the body is able to remove the bacteria by clearing it out during urination. Sometimes, however, the bacteria attach to the walls of the bladder and multiply quickly, overwhelming the body’s ability to destroy them, resulting in a bladder infection.

Simple, direct, and to the point. Here we are knowing what a bladder infection is, what the symptoms are, and how we might have developed one.  But, what do we do about it?

UTI OTC testFirst of all, verify that you have UTI or urinary tract infection since the kidneys, the urethra, and the bladder are part of this system. OTC or over the counter test strips for this purpose are available, although I seem to remember they are not effective if you’ve passed menopause.  That was seven years ago when I had my first and last bladder infection, so things may have changed.  You can also make an appointment with your doctor to verify. Usually, a high white blood cell count will indicate you’re fighting some sort of infection.

All right, let’s say you home test and see you’re fighting an infection. Now what? Well, you can try the usual home remedies of cranberry juice and uber hydration, but you have CKD.  You have to act fast before a UTI becomes a bladder infection which may lead to a kidney infection.

My advice?  Call your doctor.  He or she may prescribe an antibiotic which will hopefully clear up the infection in just a few days.  A bladder infection does not have to lead to a kidney infection or be serious… unless you ignore it.

I have spent every day of the last eight years working diligently to protect my kidneys, slow down the progress of Chronic Kidney Disease, and raise GFRmy GFR when I can.  I, for one, am not willing to jeopardize my kidney function because I didn’t jump on what I thought might be a UTI.  Won’t you join me in taking immediate action should you have the symptoms?  Remember the connections between the urethra, the bladder, and the kidneys.

Until next week,

Keep living your life!