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!

So That’s How It’s Decided

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Just Blend In

Well, if that doesn’t beat all! Here I thought I was juicing until a reader asked me if my nephrologist knew the difference between juicing and blending. There’s something called blending? Let’s get my doctor out of the equation right away. He may or may not know the difference between the two, but I certainly didn’t.

I heard juicing and just assumed (and we all know what happens when we assume) it meant tossing 80% vegetables – since this was prescribed for fast weight loss – and 20% fruits in the blender. Hmmm, the name of the machine I used should have tipped me off that there was a difference, but it went right over my head.

Let me tell you what I learned. Juice, according to Dictionary.com at http://www.dictionary.com/browse/juicing, is: “the natural fluid, fluid content or liquid part that can be extracted from a plant or one of its parts…” while juicing is “to extract juice from.” Uh-uh, I wasn’t doing that. There was no pulp left after the vegetables and fruits were processed in the blender. It all sort of mushed – oh, all right – blended together.

The same dictionary tells me blending is: “to mix smoothly and inseparably together.” Yep, that’s what I’ve been doing. By the way, for those of you who asked to be kept posted about any weight loss, I’ve lost five pounds in ten days. To be perfectly candid, there was one day of I’m-going-to-eat-anything-I –want! mixed in there.

Another CKD Awareness Advocate wondered just what I was doing to my electrolyte limits while on this blending (I do know that’s what it is now.) diet. I arbitrarily chose a recipe from a juicing book I got online before I realized I wasn’t juicing. The recipe called for:

2 beets (what a mess to peel and chop)

2 carrots (I used the equivalent in baby ones since my hands were already starting to hurt from dealing with the beets)

8 strawberries

7 leaves of kale – which I learned is also called Tuscan cabbage

I added a cup of water since I wasn’t taking any pulp out, so the mixture was really thick.

All the ingredients were on my renal diet. So far, so good. But the question was about my daily electrolyte limits. My limits are as follows (Yours may be different since the limits usually are based upon your most current labs.):

Calories – 2100

Potassium – 3000 mg.

Phosphorous – 800 mg.

Protein – 5 ounces (141,748 mg.)

Sodium – 2000 mg.

Nutritional Data at http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2348/2 tells me I drank this much of each of those electrolytes in the total of two drinks I had of this concoction… I mean blend. The measurement is milligrams and each drink replaces a meal.

 

 

Protein Phosphorus
Beets  1300   33
Carrots  2700   42
Kale  2200   38
Strawberries  1000   37
Totals  7200 150

 

 

 

Potassium

 

 

Sodium

Beets   267  1300
Carrots   359   2700
Kale   299  2200
Strawberries   233   1000
Totals  1158  7200

 

 Calories
Beets    33
Carrots    42
Kale    38
Strawberries    37
Totals   150

I had to backtrack a little to figure out that 8 baby carrots is the equivalent to 2/3 of a cup or a little over five oz. Thanks to http://www.fruitsandveggiesmorematters.org/how-much-do-i-need for the help there. They were also the source I used to verify that 8 large strawberries equal 1 cup or 8 oz.

The calculations were the hardest part of this blog for me. I rounded up whenever possible. Also, keep in mind that different sites or books may give you different approximations for the electrolytes in the different amounts of each different food you blend. I discovered that when I was researching and decided to stick with the simplest site for me to understand.

So, did I exceed my limits? I am permitted three different vegetables per day with a serving of half a cup per vegetable. There are only three vegetables in this recipe. I did go over ½ cup with the all of them, yet am under my limitations for each of the electrolytes. This is complicated. As for the fruit, I am also allowed three different ones with ½ cup limit on each. Or can I count the one cup of strawberries as two servings of today’s vegetables? Welcome to my daily conundrum.

Over all, I still have plenty of electrolytes available to me for my third meal today, which is to be a light meal of regular foods (provided they’re on my renal diet). I also have two cups of coffee a day which has its own numbers:

Protein  Phosphorus Potassium  Sodium   Calories

6000              14                232               9               4

Add those in and I still have plenty of food available to me with the electrolytes within the balance limits. The funny part is that I’m not hungry for hours after one of the blended drinks and, bam! all of a sudden I’m ravenous. I usually have the light meal mid-day so I’m not still digesting at bedtime. This is really important: on that I’m-going-to-eat-anything-I –want! day, I was hungier and hungier the more I ate and didn’t recognize when I was full.

The nice part about blending is that the fiber is still in the mixture. Fiber is necessary for a multitude of reasons when you’re a CKD patient. DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/fiber-in-the-kidney-diet/e/5320 lists those reasons for us:

Benefits of fiber

Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol

Our fourth anniversary is Thursday. We have had numerous health problems to deal with since that date, BUT we’ve also had numerous opportunities for fun…and we’ve taken each one. Did I ever tell you we had the ceremony at 4 p.m. in our backyard and the reception at 6 p.m. in order to help us remember the date? 4/6 = April 6th. Get it?

Anyway, any help offered to make the blending and a light meal work on Saturday when we’ll be celebrating by attending the Phoenix Film Festival (http://www.phoenixfilmfestival.com/) all day and night will be gratefully accepted. Bring your copy of one of my books. I’ll gladly sign it for you.

Until next week,

Keep living your life!

Getting Juiced

I have the gentlest nephrologist in the world! Well, I think so anyway. He has been cautioning me about my weight for years. Yes, there it is again: my weight. Here I was finally coming to terms with being a chubby since nothing I was doing seemed to work to lose the weight. That’s when he tossed out a bombshell.

We all know that increased weight can raise your blood pressure which, in turn, negatively affects your kidneys. I was so pleased with myself for having raised my GFR another three points on my last blood test that I didn’t understand how I could be leaking protein into my urine at the same time. Wasn’t protein in the urine simply an indication that you have Chronic Kidney Disease? Didn’t I already know that? So why was protein leaking into my urine to the tune of 252 mg. when the norm was between 15-220 mg?

I know, I know: back up a bit. Thanks for the reminder. GFR is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“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.”

Oh, and just in case you’ve forgotten, this excerpt from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is a good reminder about the stages of CKD.

“Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts. The higher the stage, the worse your kidney function.

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

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.

Many thanks to DaVita for refreshing my memory about each stage.”

Okay, back to the connection between spilling protein into your urine (called proteinuria) and CKD. This is from the recently published SlowItDownCKD 2016:

“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.’”

Let’s say you don’t have pre-diabetes, but do have CKD. Does proteinuria still make it worse? Damn! It does. This explanation is from SlowItDownCKD 2015:

“The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

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

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

I guess that explains why I magically developed a UTI after years of not having any.

I have gone so far afield from what I intended to write about on this last Monday of National Kidney Month. What was that, you ask? It was my nephrologist’s strong suggestions for immediate weight loss: juicing. I was so surprised.

After all that writing about eating the raw vegetables for roughage and sticking to only three specified amount servings of each daily, this expert in his field was telling me to ignore all that and throw myself into juicing for the immediate future. But you can bet I’ll try it; no way I’m throwing nine years of keeping my kidneys healthier and healthier out the window.

I can’t tell you if it works since I only started yesterday, but I can tell you it doesn’t taste bad. I’m learning how to use this fancy, dancy blender we got three years ago that had just been sitting on the shelf. Experimenting with the consistency has caused a mess here and there, but oh well.

My first juicing experience included kale, celery, lemons, cucumbers, and ginger. I definitely need to play with my combinations. I also think I made far too much. Luckily Bear was in the house and shouted out that the machine was making that noise because I didn’t add enough water. Water? You’re supposed to add water?

I’ll keep you posted on these experiments if you’ll get yourself tested for CKD. It’s just a blood and urine test. Fair deal?

Until next week,

Keep living your life!

Processed Foods: Yea or Nay?

Good morning, world! It’s still March which means it’s still National Kidney Month here in the USA and Women’s History Month. I’m going to take liberties with the ‘history’ part of Women’s History Month just as I did last month with Black History Month. Today we have a guest blog from a woman – Diana Mrozek, RDN – which deals with the kidneys.

You know you’re entitled to a free nutritional appointment yearly after two the first year if you have CKD. Here’s what I wrote about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Most people think of a nutritionist as a luxury even if they do have a chronic disease.  When I pulled out my checkbook to pay my renal dietitian [RD], I was told the government will pay for her services.  That made sense.  Especially in the current economic atmosphere and for older people, the government needs to help pay our medical bills.”

My nephrologist is part of a practice which rotates their nutritionists. It’s a pretty good idea since I get different points of view about my renal diet from dietitians who each have my records at hand. Your renal diet is tweaked according to your latest labs, so having your records in front of them is important to you and your nutritionist.

Notice I was writing about a RD and Diana is a RDN. The only difference between the two is that Registered Dieticians need not also be Nutritionists, but an RDN is both a Dietician and a Nutritionist.

Let’s take a look at Diana’s unique take on processed foods now.

Processed Food, Chronic Kidney Disease and Your Health

What foods come to mind when you hear the words “processed food”? Is it potato chips? Fast food? Margarine? Or maybe bread? Olive oil? Milk? Do you think artificial? Unhealthy? Safe? Convenient? Cheap?

If any of these words or foods came to mind, you are correct! Let’s clarify. Processed is a term that applies to a wide range of foods as by definition they are any food that has been altered from its natural state usually for either safety or convenience. Many foods need to be processed to make them suitable for eating, for example extracting oil from seeds and pasteurizing milk to make it safe to drink.

Processed foods can have many benefits like convenient and safe food storage as well as better retention of nutrient content. For example, flash frozen fruits and vegetables may have higher vitamin and mineral content than fresh or canned. They also provide more choice, less waste, less cost and can reduce food preparation and cooking time. Processed foods can be helpful for people who have difficulty cooking, like the elderly or disabled.

Over the past several years, many working in the nutrition industry have become very critical of processed foods, and their widespread use in our diet has been blamed for everything from obesity to cancer. However, other than fresh produce straight from the fields, you would have a hard time finding many unprocessed foods in your local grocery store. Most store-bought foods have been processed in some way including freezing, canning, baking, drying, irradiating and pasteurizing. Processed foods are here to stay, but making informed choices when grocery shopping will allow them to be part of a healthy, balanced diet.

The problem with some of today’s processed foods are the amounts of salt, sugar and fat that are often added to enhance taste, extend shelf life and retain moisture, texture, etc. Because we rely heavily on processed foods, we may be eating more salt, sugar and fat than we need. This is important for people with kidney disease who need to watch salt intake for blood pressure control. Kidney patients who also have diabetes need to limit sugar intake as well. Since both diabetes and kidney disease increase the risk of heart disease, fat intake is another concern.

So how do you select healthier processed foods?

In general, you want to choose products with less fat and sodium, more fiber and the least added sugar. The best way to do this is to read the Nutrition Facts Label and stick to eating one serving of packaged foods. Use the following guidelines when looking at different nutrients and ingredients on the nutrition labels to make better choices:

Trans Fats – Look for 0 grams. Trans fats are hidden in many fried and baked foods like biscuits, cookies, crackers as well as frozen foods. They increase levels of bad cholesterol (LDL) and decrease good cholesterol (HDL).  If you see shortening or partially hydrogenated oils in the ingredient list, it has trans fat. Remember…Trans fat? Put it back!

Saturated fat – For most people, intake of saturated fat should be around 13-18 grams per day.

Sodium – Sodium intake should be less than 2300 milligrams (mg) per day or 700-800 mg per meal. Look for “no salt added” canned items or items with preferably less than 200 mg per serving. Limit use of boxed side dishes with seasoning packets as well as high sodium condiments like soy sauce, barbeque sauce and bottled dressing and marinades.

Sugar – Sugars are a bit trickier. Instead of grams, check ingredient lists for sugars like corn sweetener and high fructose corn syrup, and words ending in -ose, like dextrose or maltose. If a sugar ingredient is one of the first three ingredients in the list or if there are more than 2-3 different types of sugars, it likely has a lot of added sugar.

Fiber – Look for at least 3 grams of fiber per serving for cereal, bread and crackers. Also, look for the word “whole” before grains, like whole wheat. If it says enriched, it’s likely had the fiber removed during processing.

By spending a few extra minutes of your shopping time taking a closer look at the groceries you are buying, you can limit less healthy additives and still enjoy all the benefits of processed foods!

While I agree with Diana now that she’s brought up processed foods, remember your labs will dictate your renal diet.

I almost forgot to tell you: in Honor of World Kidney Day. which was March 9th, SlowItDownCKD 2016 is now available in print on Amazon.com!!!!!

Until next week,

Keep living your life!

February is Black History Month

In honor of Black History Month, I thought I would write about Blacks who have contributed to the research and treatment of Chronic Kidney Disease. I’ll be highlighting a few people and then dealing with why CKD is treated differently for Blacks.

Ladies first: Dr. Bessie Young is a nephrologist… and more. This is from The University of Washington’s Department of Medicine at young-bessiehttps://medicine.uw.edu/news/dr-bessie-young.

“Dr. Young is a professor of medicine in the Division of Nephrology and holds adjunct titles in the Departments of Epidemiology and Health Services. She received her MD in 1987 and her MPH in 2001, both from the University of Washington.

Her research focuses on racial disparities and genetic factors predicting outcomes of patients with kidney disease, education regarding access to transplantation and dialysis for minorities, and access to kidney disease care in rural areas.”

While I have great admiration for both Drs. Young and Kountz (see below), I feel a connection with Dr. Vanessa Grubbs. We corresponded a bit when she first began her blog, which is both personal and professional. We all know I’m not a doctor and have never claimed to be one, but I’m convinced I can feel what a nephrologist feels when I read her blog.  This is from The California Health Care Foundation’s website at http://www.chcf.org/authors/vanessa-grubbs?article=%7BF610E00F-9FE7-4E95-AEBB-5781EE7E0F66%7D:

“Dr. Grubbs is an assistant professor of medicine in the Division of Nephrology at the University of California, San Francisco, Zuckerberg San Francisco General vanessa-grubbHospital, where she has maintained a clinical practice and clinical research program since 2009. Though most of her time is dedicated to research and patient care, her passion is creative nonfiction writing. She is working on her first book, and she blogs at thenephrologist.com.”

Her book, Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match will be available on Amazon.com this June. By the way, she donated a kidney to her husband when they were only dating.

Samuel L. Kountz, M.D was another innovative contributor to Nephrology from the Black Community. As Blackpast.org tells us:

“In 1961 Kountz and Roy Cohn, another leading surgeon, performed the first successful kidney transplant between two people who were close relatives but not twins.  Over the next decade Kountz researched the process of kidney transplants on dogs.  He discovered that monitoring blood flow into the new kidney and administering methylprednisolone to the patient after surgery allowed the body to accept the new organ.    samuel-kountz

In 1966 Kountz joined the faculty at Stanford University Hospital and Medical School and in 1967 he became the chief of the kidney transplant service at University of California at San Francisco (UCSF).  There he worked with Folker Belzer to create the Belzer kidney perfusion machine.  This innovation kept kidneys alive for 50 hours after being removed from the donor.  Through Kountz’s involvement at UCSF, the institution’s kidney transplant research center became one the best in the country.  Kountz also created the Center for Human Values at UCSF, to discuss ethical issues concerning transplants.”

It’s time for an explanation as to why I wrote “why CKD is treated differently for Blacks,” isn’t it?

This is from Jane E. Brody’s article Doctors sharpen message on kidney disease reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“There are four main risk factors for kidney disease:  diabetes, high blood pressure, age over 60 and a family history of the disease. Anyone with these risk factors should have a test of kidney function at least once a year, Vassalotti said.  (Me here: he was the National Kidney Foundation’s Chief Medical Officer at the time the article was written). Members of certain ethnic groups are also at higher than average risk: blacks, Hispanics, Pacific Islanders and Native Americans.”

This means physicians need to monitor blood pressure and diabetes more closely for blacks (as well as the other high risk groups).

Why, you ask.  This bit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will explain about the blood pressure.

“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.”IMG_2979

As for diabetes, I turned to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, for this tidbit:

“According to Diabetes.co.uk at http://www.diabetes.co.uk/how-does-diabetes-affect-the-body.html, ‘The kidneys are another organ that is at particular risk of damage as a result of diabetes and the risk is again increased by poorly controlled diabetes, high blood pressure and cholesterol’”

In addition, there is a gene more prevalent in Blacks that can exacerbate their CKD. “This discovery provides direct evidence that African-Americans with established CKD and the APOL1 risk gene variant experience a faster decline in kidney function compared to their white counterparts, irrespective in most cases of what caused their kidney disease.” Afshin Parsa, M.D., a nephrologist at the University of Maryland School of Medicine in Baltimore and a CRIC Study investigator.

parsaDr. Parsa was referring to the study on APOL1 which was published in The New England Journal of Medicine.

The following is from The National Kidney Foundation’s Fact Sheet on Blacks and CKD at https://www.kidney.org/news/newsroom/factsheets/African-Americans-and-CKD.

  • Blacks and African Americans suffer from kidney failure at a significantly higher rate than Caucasians – more than 3 times higher.
  • African Americans constitute more than 35% of all patients in the U.S. receiving dialysis for kidney failure, but only represent 13.2% of the overall U.S. population.
  • Diabetes is the leading cause of kidney failure in African Americans. African Americans are twice as likely to be diagnosed with diabetes as Caucasians. Approximately 4.9 million African Americans over 20 years of age are living with either diagnosed or undiagnosed diabetes.
  • The most common type of diabetes in African Americans is type 2 diabetes. The risk factors for this type of diabetes include: family history, impaired glucose tolerance, diabetes during pregnancy, hyperinsulinemia and insulin resistance, obesity and physical inactivity. African Americans with diabetes are more likely to develop complications of diabetes and to have greater disability from these complications than Caucasians. African Americans are also more likely to develop serious complications such as heart disease and strokes.
  • High blood pressure is the second leading cause of kidney failure among African Americans, and remains the leading cause of death due to its link with heart attacks and strokes.NKF-logo_Hori_OB

Today’s blog was a bit longer than usual to bring you this important information. We celebrate Black History Month AND need to make our Black family members, friends, and co-workers aware of their heightened risk so they can help prevent their own CKD.

Until next week,

Keep living your life!

At Last: Cuba

img_4287I’ve been saying for a couple of weeks now that I would write about Cuba, or rather The Republic of Cuba since that is the country’s official title. That’s where I spent my Groundhog’s Day 70th birthday in the company of my husband, brother, and sister-in-law. By the way, whenever we travel together, they are the best part of the trip no matter what we see or where we go.

But I digress; Cuba is a beautiful country with friendly people and colorful buildings painted in those colors the government approves … in addition to free education and free medical care. Considering Cuba is a country run by The Communist Party, maybe this universal medical and education isn’t as free as we might think.

Let’s take a look at the education first since you can’t have nephrologists without education. While there is free education, you need to be loyal to the government and perform community service as the ‘price’ of receiving it. I wasn’t clear about how you demonstrated “loyal to the government,” but the Cubanos (as the Cuban people refer to themselves) politely declined to discuss this.

The education includes six years of basics of reading, writing, and arithmetic – the same 3 Rs we study in grade school in the USA. After that, there are three years of img_4006middle school with traditional school subjects that are taught pretty much anywhere. But then things change. Cubanos can attend what we might consider a traditional high school for three years or a vocational school for three years.  This is also when marching in parades and community service begins.

Nephrologists would have chosen the traditional high school. After that, there’s another five to six years of university for their medical degree. Not everyone attends university; students need to pass certain exams in order to be allowed to attend… something we’re used to hearing. So now our doctor has become a doctor. What additional education is needed to become a nephrologist?

I tried to question the people I met in ports of call, but again they declined to answer in full. From the little bit I got from them and the even less I could garner from the internet: all medical students need to do a residency in General Medicine. If you want to go on to a specialty – like Nephrology – you need to do an additional residency in that field.

Well, what about the medicine itself? What do Cubano doctors know about nephrology?

According to Radio Angulo – Cuba’s information radio – on November 23 of last year,

img_4040“The positive development of this specialty began with the triumph of the Revolution in 1959, as Dr. Charles Magrans Buch, full professor and professor emeritus, told Granma International. Magrans began practicing his profession in 1958 in the Clinico de 26, today the Joaquin Albarran Clinical-Surgical Teaching Hospital, home to the Dr. Abelardo Buch Lopez Institute of Nephrology.”

Granma International describes itself as The Official Voice of the Communist Party of Cuba Central Committee.

As for the quality of the medical schools,

“…Cuba trains young physicians worldwide in its Latin American School of Medicine (ELAM). Since its inception in 1998, ELAM has graduated more than 20,000 doctors from over 123 countries. Currently, 11,000 young people from over 120 nations follow a career in medicine at the Cuban institution.”  You can read more about ELAM in Salim Lamrani’s blog in the 8/8/14 edition of The Huffington Post at http://www.huffingtonpost.com/salim-lamrani/cubas-health-care-system-_b_5649968.html

Yesterday, I stumbled upon this which is also from Granma: “The Cuban Institute of Nephrology is celebrating its 50th anniversary this December 1st, having provided more than 5,000 kidney transplants and 3,125 patients with dialysis.”

So, nephrology is not new to Cuba nor is there a dearth of opportunities to study this specialty. Keep in mind that this is government run health care. There aren’t img_4142any private clinics or hospitals in Cuba.

And how good is that health care system? This is from the 4/9/14 HavanaTimes.org:

“Boasting health statistics above all other countries in Latin America and the Caribbean (and even the United States), Cuba’s healthcare system has achieved world recognition and been endorsed by the World and Pan-American Health Organizations and the United Nations.”

HavanaTimes.org is not part of the government. Some of their writers have been blacklisted, while others have been questioned. Somehow, that makes me feel more secure that their information is not the party line but more truthful. I don’t mean to say the government is dishonest, but I prefer information from private sources in this case.

Before you get your passport in order and book a trip to Cuba for medical reasons, you should know  “…it is not legal for Americans to go to Cuba as medical tourists….” This information is from Cuba Medical Travel Adviser & Guide at http://www.doctorcuba.com/. What I found curious is that it is not illegal for Cuban doctors to treat American patients in Cuba. Do Americans disguise themselves as being from other countries to obtain the low cost, high quality medical treatment Cuba has to offer? How can they do that if a passport is needed to enter the country? Maybe I’m naïve.

img_4213Cuban medicine follows a different model than that of the USA. A general (family) doctor earns about $20 a month with free housing and food.  His or her mornings are spent at the clinic with the afternoons reserved for house calls. Doctors treat patients and/or research. Preventive medicine is the norm with shortages of medication and supplies a constant problem.

You have to remember that I have limited access to information about Cuba (as does the rest of the world), and am not so certain my even more limited Spanish – which is not even Cubano Spanish – and the limited English of the Cubanos I spoke with has allowed me to fully understand the answers I was given to the questions I asked.

It’s been fun sharing what I think I learned with you since it brought the feeling of being in Cuba right back. Can you hear the music?  I’ve got to get up to dance.

Until next week,

Keep living your life!IMG_2979

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!

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.

Starting the New Year with a Miracle

fireworksHappy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at newslowitdownckdfbcoverSlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written AKF logofor the lay person, not the medical community. By the way, the National Kidney Foundation also has information about NKF-logo_Hori_OBCKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.friends

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

kidneys5There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.hearing

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.IMG_2979

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

It’s a Miracle!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Medical Individuals

FullSizeRender (2)We all know I write about Chronic Kidney Disease, or CKD, but just what is that? When I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease six years ago, I defined CKD as “Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.” Although I’m not so sure about that “cannot be reversed” any more, this is simple, right?

Well, not exactly. Over the years, many readers have pointed out that they have another form of kidney disease. According to University Kidney Research Organization (UKRO) @ http://ukrocharity.org/kidney-disease/different-types-of-kidney-diseases/, these are all considered kidney disease:

Wait a minute. Chronic means of long duration. Then with the exception (hopefully) of kidney stones, these diseases can all be classified as CKD… but are they when it comes to treatment?

Dr. Joel Topf is a nephrologist who writes a blog of his own (Precious Bodily Fluids @pbfluids.com) and is a member of the eAJKD Advisory Board at American Journal of Kidney Disease. He must make great use of his time because he has helped develop teaching games for nephrology students and has written medical works. (Yeah, I’m impressed with him, too.)

He’s also a Twitter friend. He contacted me the other day about an article in the Clinical Journal of the American Society of Nephrology entitled “The CKD Classification System in the Precision Medicine Era,” which was written by Yoshio N. Hall and Jonathan Himmelfarb. You can read it for yourself on their site, but you’ll need to join it and get yourself a user name and password. I didn’t. Joel sent me the copy I needed.

cjasn

My first reaction to his request was, “Sure!” Then I read the article and wondered if I could handle all the medicalese in it. Several readings later, I see why he asked me to write about it.

I say I have CKD stage 3B. You understand what I mean. So does my nephrologist. That’s due to the KDOQI. As I explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, this is The National Kidney Foundation Kidney Disease Outcomes FullSizeRender (3)Quality Initiative which was not put into place until 1997 and then updated only five years later in 2002. It introduced stages and put CKD on the world medical map. By the way, the 2012 revised guidelines helped raised awareness of CKD according to the CJASN article: “…from 4.7% to 9.2% among persons with CKD stages 3 and 4 in the United States ….”

But something is missing. How can my stage 3 CKD be the same for someone who has, say, Nephrotic Syndrome? We may have the same GFR, but are our symptoms the same? Is the progression of our illnesses the same? What about our treatment? Our other test results?

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in 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 IMG_2980through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.”

I know, I know, I didn’t explain what “the Precision Medicine Era” is, either. According to the article, “The underlying concept behind the Precision Medicine Initiative is that disease prevention and treatment strategies must take individual variability into account.” Actually, President Obama first used the term in his State of the Union Address last year.

Alrighty now, back to why CKD staging is not necessarily precision medicine. It seems to center on one phrase – individual variability. I was diagnosed at age 60. I’m now almost 70. Where is the age adjustment in my treatment plan? Is there one? What about when I’m 80? 90? We know the body reacts differently to medications as we age. Is my nephrologist taking this into account? Is yours? I’m taking liberties with the definition of individual here; I don’t think the authors meant within the individual, but rather amongst individuals.

I check my husband’s blood test results for his GFR. FOR HIS AGE, he does not have CKD. But here’s another point I’ve been ranting about that’s brought up in this article. Many elders (Oh my! We’re in that category already.) are not being told if they have stage 1 or stage 2 CKD because their doctors age adjust and so don’t consider the results CKD. We’re getting a little esoteric here. Is CKD really CKD if you’ve age adjusted your GFR readings?

My brain is starting to hurt and I haven’t even written about the different diseases yet, although I did allude to them earlier. What impressed me most in this article is this (in discussing four different hypothetical patients): “Each would be classified as having stage 3 CKD with approximately the same eGFR, but it is patently obvious that virtually every aspect of clinical decision making … would greatly differ in caring for these four individuals.”

I have to agree in my layman way. I’m not a doctor, but I know that if you have Polycystic Kidney Disease and I don’t, although our GFR is the same, I cannot receive the same treatment you do and you cannot receive the same treatment I do. Yes, they’re both kidney diseases and both chronic, but they are not the same disease despite our having the same GFR.

stages of CKDThere is no one size fits all here. Nor does there yet seem to be precision. My CKD at 70 is not the same as it was at 60. If I had diabetes, my CKD treatment would be different, too.  I do have hypertension and that has already changed my CKD treatment.

This got me to thinking. How would every nephrologist find the time for this individualized treatment for each CKD patient? And what other tests will each patient need to determine treatment based on his/her UNIQUE form of CKD?IMG_2982

Thanks for the suggestion, Dr. Topf. This was worth writing about.

Until next week,

Keep living your life!

 

TED Doesn’t Talk to Me; But YouTube Does

After last week’s accolades for the blog about apps for kidney disease, I thought I would keep on the electronic trail and jump right over to one of the big boys: TED Talks. I was both excited and a bit apprehensive since this is new territory for me. I have heard some of my children talk about them, but never explored these talks for myself.

downloadWhat new information could I learn here? Would it be easier or harder to understand? And just what were T.E.D. Talks anyway?  Doing what I like to do best, I jumped in for a bit of research.

This is directly from the TED website at www.ted.com:

“TED is a nonpartisan nonprofit devoted to spreading ideas, usually in the form of short, powerful talks. TED began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 110 languages. Meanwhile, independently run TEDx events help share ideas in communities around the world.”

IMG_2982Considering what’s been going on with our insane politics this election, I thought I would check the meaning of nonpartisan just to make sure it had a meaning other than the one I’d been hearing bantered around. According to the Encarta Dictionary, it means “not belonging to, supporting, or biased in favor of a political party.” I wasn’t so sure that’s what it meant for TED, so I used the synonym function in Word; that made much more sense: impartial, unaligned, unbiased, unprejudiced, neutral, and so on.

Now that we know what TED is, let’s plunge right in and do some exploring. I searched Chronic Kidney Disease and got no hits. That’s all right; a synonym is renal disease. I’ll search that. All that came up was “Timothy Ihrig: What we can do to die well.” That’s not exactly what I was looking for.

I know, I’ll type in kidney failure. Hmmm, that didn’t work very well, either. I found two interesting talks, “Siddhartha Mukherjee: Soon we’ll cure diseases with a cell, not a pill” and “Anthony Atala: Printing a human kidney,” as well as two blogs that may have peripherally included CKD. No, these were not the talks about living with CKD that I’d hoped to find.

What other term could I search? I know, how about just-plain-kidney? I got three pages of hits which weren’t really hits at all if you were looking for living with Chronic Kidney Disease. While TED Talks cover a variety of interesting topics, I don’t think they’re CKD specific right now.  Maybe in the future…

I was a little crestfallen, but then I remembered that when I first decided to FullSizeRender (2)become a CKD Awareness Advocate and wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I made a couple of YouTubes as marketing devices. They were terrible, but did include some helpful information. You can see this for yourself at https://www.youtube.com/watch?v=8VcVYhhrixg and https://www.youtube.com/watch?v=nRsUNxv7ajA.

When you’ve picked yourself up from the floor after getting your belly laughs at my expense (cringe), start exploring YouTube for CKD information by looking at the side bar on each of my woebegone entries into the world of YouTube.  The list of videos continues and goes on and on. Yay!

FullSizeRender (3)

Of course, just as when you’re looking online – or choosing a book – or a blog to follow, you need to be careful to separate the wheat from the chaff. There are charlatans and scammers here, just as there are respected physicians and patients bravely sharing their stories.

But what is YouTube anyway? https://www.youtube.com/yt/about/tells us:

“Launched in May 2005, YouTube allows billions of people to discover, watch and share originally-created videos. YouTube provides a forum for people to youtubeconnect, inform, and inspire others across the globe and acts as a distribution platform for original content creators and advertisers large and small.

YouTube is a Google company.”

You’ll also find some YouTubes I posted that show friends, family, even me dancing either the Blues or East Coast Swing. My point? Anyone can post anything provided it does not include:

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

Copyright (Me, here, this refers to copyrighted material.)

Threats

You can read more about these community guidelines at https://www.youtube.com/yt/policyandsafety/communityguidelines.html.

I chose one or two posts to see the quality we can find here. (Very funny, no, this is not a case of I- wouldn’t-want-to-be-a-member-of-any-club- that-lets-me-in.) I noticed one of the physicians I’d had contact with as an advocate, Dr. Robert Provenzano, posted about the causes of CKD on 2/3/09 at https://www.youtube.com/watch?v=CjZCKBOoeQo which was highly informative… but getting close to seven years old.

I wanted something more recent and found it at https://www.youtube.com/watch?v=n1_srNUJkjE. This one by Danuta Trzebinska, MD, of US San Diego Health, deals with possible symptoms of CKD and was posted last year.

But then I found YouTube about a kidney cleanses which could be harmful to already damaged kidneys. Dr. Josh Axe at https://www.youtube.com/watch?v=3AqPE-j3Eq0 was not particularly targeting CKD patients, but as a new CKD patient, how could you know that? Some of the herbs he suggests are harmful to ALREADY COMPROMISED kidneys. You need to be careful about which videos are for those with CKD and which are for those without CKD. Of course, you’re IMG_2980checking everything you see with your nephrologist before you act on it. Right? You are, aren’t you? You’ve got to protect your kidneys, so please (Let’s make that pretty please.) do.

I’m wondering what other electronic helps I could explore. We’ve looked at apps, TED Talks, and YouTube. What other electronic aids do you know about that I don’t? I’ll be more than happy to explore them for myself which means I’ll be exploring them for you, too, since they’re going to end up being the next blog.

halloweenwitchvintageimagegraphicsfairyToday is Halloween. You know those treats? Why not treat yourself by not eating them? It’s hard, but it can be done.

Until next week,

Keep living your life!

Then Why Wait?

paul-peckIt’s that time of year again, ladies and gentlemen. Time for what, you ask. Well, yes, it is almost time for Halloween (and my fellow writer brother’s Halloween birthday) but it’s also time for your flu shot… or jab, depending upon which part of the world you’re in. I’ve written before about why it’s important to have this protection, especially if you’re getting older – like me. But I don’t think I’ve written about why it’s a good idea to wait.

“’If you’re over 65, don’t get the flu vaccine in September. Or August. It’s a marketing scheme,’ said Laura Haynes, an immunologist at the University of Connecticut Center on Aging,” in the same NPR article referred to later in this blog. Considering the information my own immunologist gave me, I have to agree. But, here we are back to what my cousin calls my probing question: why?

According to the CDC (Centers for Disease Control and Prevention) at http://www.cdc.gov/flu/about/season/flu-season-2016-2017.htm:

“Getting vaccinated before flu activity begins helps protect you once the flu season starts in your community. It takes about two weeks after vaccination for the body’s immune response to fully respond and for you to be protected so make plans to get vaccinated. CDC recommends that people get a flu vaccine by the end of October, if possible. However, getting vaccinated later can still be beneficial. CDC recommends ongoing flu vaccination as long as influenza viruses are circulating, even into January or later.”

Wait a minute. How do the private companies that produce the flu vaccine know what strains to include protection against? NPR (National Public the shotRadio) at http://www.npr.org/sections/health-shots/2016/09/15/493982110/yes-it-is-possible-to-get-your-flu-shot-too-soon has something to say about that:

“To develop vaccines, manufacturers and scientists study what’s circulating in the Southern Hemisphere during its winter flu season — June, July and August. Then, based on that evidence, they forecast what flu strains might be circulating in the U.S. the following November, December and January, and incorporate that information into flu vaccines that are generally ready by late July.”

Nope, still doesn’t answer my question.  I decided to turn to CNN at http://www.cnn.com/2016/09/26/health/wait-for-flu-shot/ :

“”… antibodies created by the vaccine decline in the months following vaccination “primarily affecting persons age 65 and older,” citing a study done during the 2011-2012 flu season. Still, while ‘delaying vaccination might permit greater immunity later in the season,’ the CDC notes that ‘deferral could result in missed opportunities to vaccinate.’”

This is in keeping with what my own immunologist and my PCP (primary care physician) both warned me. Bear is 70. I’m close to it. We won’t be having our inoculations until later in October. Which brings us around to the question of why have the flu shot at all?

FullSizeRender (3)The England’s Department of Health chart included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  partially answers this question:

Even if you feel healthy, you should definitely consider having the free {In England, that is} seasonal flu vaccination if you have:

  • a heart problem
  • a chest complaint or breathing difficulties, including bronchitis or emphysema
  • a kidney disease  {I bolded and italicized this for obvious reasons.}
  • lowered immunity due to disease or treatment (such as steroid medication or cancer treatment)
  • a liver disease
  • had a stroke or a transient ischaemic attack (TIA)
  • diabetes
  • a neurological condition, for example multiple sclerosis (MS) or cerebral palsy
  • a problem with your spleen, for example sickle cell disease or you have had your spleen removed.

I found this little nugget that’s more emphatic about why Chronic Kidney Disease patients need to have the vaccine in SlowItDownCKD 2015:

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells IMG_2980us,

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

You’ve probably heard that there are different strains of the flu. I went to England’s National Health Services site at http://www.nhs.uk/Conditions/vaccinations/Pages/how-flu-vaccine-works.aspx to discover what they are:

“There are three types of flu viruses. They are:

  • type A flu virus – this is usually the more serious type. The virus is most likely to mutate into a new version that people are not resistant to. The H1N1 (swine flu) strain is a type A virus, and flu pandemics in the past were type A viruses.
  • type B flu virus – this generally causes a less severe illness and is responsible for smaller outbreaks. It mainly affects young children.
  • type C flu virus – this usually causes a mild illness similar to the common cold.

Most years, one or two strains of type A flu circulate as well as type B.”

A new site for me, but one I suspect I’ll be returning to in the future, Public Health at http://www.publichealth.org/public-awareness/understanding-vaccines/vaccines-work/ explains how a vaccine works:

virus“A vaccine works by training the immune system to recognize and combat pathogens, either viruses or bacteria. To do this, certain molecules from the pathogen must be introduced into the body to trigger an immune response.

These molecules are called antigens, and they are present on all viruses and bacteria. By injecting these antigens into the body, the immune system can safely learn to recognize them as hostile invaders, produce antibodies, and remember them for the future. If the bacteria or virus reappears, the immune system will recognize the antigens immediately and attack aggressively well before the pathogen can spread and cause sickness.”

I’ve already had something. I don’t know it was, but it felt like a little bit of a preview for the flu and it was awful. When I become ill, I can be down for anywhere from three to six weeks.  This time? Probably 10 days which, by the way, is the usual run for the common cold. Was it a cold? Strain C of the flu? I don’t know, but you can bet it reinforced that I’ll be getting that flu shot. Why go for more misery if I can help it?

Until next week,FullSizeRender (2)FullSizeRender (2)

Keep living your life!

Not Your New Age Crystals

Sometimes, a reader will ask a question and I’ll research the answer for him/her, always explaining first that I’m not a doctor, don’t claim to be one, and (s)he will need to check whatever information I offer with his/her nephrologist before acting on it. There was just such a comment this week: “Just wondering if you have any advice on Gout and it’s effect on Kidney disease? Mary.” Advice? No. Research? Yes.

What is itLet’s establish just what gout is first. This is how it’s defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease :

“gout: particularly painful form of inflammatory arthritis characterized by a build-up of urate crystals in the joints, causing pain and inflammation.”

Urate crystals? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=11853 defines these as: “… salt derived from uric acid. When the body cannot metabolize uric acid properly, urates can build up in body tissues or crystallize within the joints.”

Okay, what’s uric acid then? Thanks to the Merriam Webster Online Dictionary at http://www.merriam-webster.com/dictionary/uric%20acid for the 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.”

Whoops, looks like I missed a definition here: tophi simply means the deposit itself.

You may be wondering what that has to do with Chronic Kidney Disease.  This paragraph from The IMG_2982Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 explains:

“Researching that brought me to an English article from Arthritis Research UK which cited an American study.  I’m going to reproduce only one paragraph of the article here because it brought home exactly what gout with Chronic Kidney Disease can do to your body.

‘The findings were presented at Kidney Week 2011 by researcher Dr Erdal Sarac. He concluded: ‘This study reveals a high prevalence of gout in patients with CKD. Male sex, advanced age, CAD, hypertension, and hyperlipidemia were significantly associated with gout among CKD patients.’”

You may need some more definitions to fully understand that paragraph, so I’m reproducing these from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

CAD: coronary artery disease

hyperlipidemia: high cholesterol

hypertension: high blood pressure

Gout sounds bad. I’ll bet you’re wondering how you can help avoid gout… especially if you have CKD. Let’s go back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for a moment.

“One disease, CKD, can be implicated for three others if you also have gout.  … I didn’t know that gout is also somehow in the mix of being medically compromised.  I have hyperlipidemia and hypertension and CKD.  True, I’m not an older male but should I become more vigilant about any hints of gout? ….

bottled waterI would have to be careful about my food and beverage intake. Oh, wait, I’m already doing that by following the renal diet. In both, you are urged to cut back on alcohol and drink more water instead. Purines are a problem, too, but then again I am limited to five ounces of protein {A purine food source} per day. Hmmm, avoiding sugar-sweetened drinks may help. Say, with CKD, I have to watch my A1C {How the body handles glucose or sugar in a three month period} so that I don’t end up with diabetes.  That means I’m watching all my sugar intake already. I see fructose rich fruits can be a problem.  But I’m already restricted to only three servings of fruit a day!  Oh, here’s the biggie: lose weight.  Yep, been hearing that from my nephrologist for four (Me here: it’s more like nine years now.) years.  To sum up, by attending to my CKD on a daily basis, I’m also attempting to avoid or lessen the effects of gout.

This is getting very interesting.  I also take medication for both hypertension and hyperlipidemia.  Are they also helping me to avoid gout?  It seems to me that by treating one condition {Or two in my case}, I’m also treating my CKD and possibly preventing another.  It is all inter-related.”

By the way, based upon another reader’s question I mentioned cherries and gout in The Book of FullSizeRender (3)Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“From my reading, I’ve also garnered the information that cherries can help with iron deficiencies, lower blood pressure, improve sleep, help with gout, and lower the risk of heart disease.

Or can they? Remember that too much potassium can actually cause an irregular heartbeat or possibly stop your heart.”

So now, we need to watch purines and potassium, too. Aha! Following the renal diet already is helping to avoid potassium. What about purines? 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.”cherries

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”

Does this list sound familiar? It should if you’re following the renal diet. While not exactly the same, there’s quite a bit of overlap in the two diets.

Mary… and every other reader… I hope this was enough information for you to write a list of questions about CKD and gout to bring to your next nephrology appointment.

IMG_2980Until 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!

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!

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)

A Cautionary Tale

Last week, I found myself crushed for time: a friend was coming to visit from Florida, we had a Father’s Day brunch at our house, there were Ave Qtheater tickets, one of the kids needed immediate aid since she was in her own time crunch, the list goes on and on. Taking that into account and not wanting to add that old demon ‘stress’ to the list, I thought I’d do a quick, easy blog about acupuncture/acupressure and Chronic Kidney Disease.

But while researching I discovered a number of sites with online doctors and changed my topic immediately. The ones I clicked on were:

I’m sure there are more, but rather than be an alarmist, I want to be an explainer.

Explainer of what you ask. Not acupuncture or acupressure.  There’s a discussion of how acupressure works in the May 4th blog in SlowItDownCKD 2015 Book Cover (76x113)SlowItDownCKD 2015.  Acupuncture works on the same principle, but using very fine needles rather than pressure. I happily and confidently made use of both before my CKD diagnose and only ceased my treatments when the senior acupuncturist working on me told me these treatments would not help with the CKD. That was over nine years ago. He may have changed his opinion since then.

I want to explain why online doctors are not such a great idea. I can practically see some of you rolling your eyes at me while others are thinking, “Why not?” Okay, maybe they’re legal, but are they ethical? I found a fairly straight forward abstract on ResearchGate which states:

“…online medical consultations pose greater dangers to patients compared to traditional off-line consultations…. while new technologies may aid doctors in making better diagnoses at a distance, they often bring new concerns.”

You can read more about this yourself at https://www.researchgate.net/publication/228234723_Online_Medical_Consultations_Legal_Ethical_and_Social_Perspectives

arthritisI find myself struggling here. I am all in favor of online doctor summaries by your doctors, test reports from your labs, and general medication explanations from the internet. However, I simply cannot understand how someone who has never met you, someone who has not examined your body, someone who has never spoken with you can advise you on your health.

I’ve mentioned before that I have psoriasis, arthritis, neuropathy, sleep apnea, and probably a host of other as-yet-undiagnosed-inflammatory based diseases (This might be a good time to reread last week’s blog about inflammation caused disease. Connected) How can someone who’s never met me take all of this into account when dealing with my health?

A perfect example of what I’m talking about is from the IMPRESSIONS section of my rheumatologist’s recent report,

“This is a very complex patient that presents today with generalized myalgias and arthralgia….Her health history is complicated by carpal tunnel syndrome, neuropathy and chronic kidney disease, stage 3.”

She has not missed a trick. Myalgia, according to the Medical Dictionary at http://medical-dictionary.thefreedictionary.com/myalgia is muscular pain. The Mayo Clinic at http://www.mayoclinic.org/symptoms/joint-pain/basics/definition/sym-20050668 tells us arthralgia is joint pain.  So my muscles and joints hurt. Without seeing me, without testing my joints and muscles, without seeing if the joints are disfigured or the muscles flaccid (for example) how could she help me?

I’m not one to take pain killers, especially NSAIDS which are defined in the glossary of What Is It and How Did I Get It? What is itEarly Stage Chronic Kidney Disease.

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

So I have pain and I can tolerate it. I can’t help but wonder what an online doctor would diagnose. I decided to become a test case. I contacted an online doctor from one of the sites listed above. This is the transcript of that online chat, errors and all.

Welcome! This is a real online-doctor, not a robort. If you have any questions on kidney disease, feel free to type your questions, you will surely         get reply. No consultation fee.

If the online doctors are all busy and you can’t get response for a long time, you can contact us by phone or email. (Contact information                       followed.)

renal-onlinedoctor: Hello, I am renal-onlinedoctor, I am very glad to talk with you!

You: I have pain. What do I do about it?

renal-onlinedoctor: hello, your age and gender?

You: 69 female

renal-onlinedoctor:  ok, what is the current kidney function or creatinine level? do you knowonline doc

You: 50%

renal-onlinedoctor:  ok, Any symptoms? foamy urine, swelling, fatigue, back pain, anemia, itching,  etc

You: Just joint and muscle pain.

renal-onlinedoctor: i see. Do you have Diabetes, high blood pressure, or other problem?

You: HBP, neuropathy, arthritis, psoriasis

renal-onlinedoctor:  ok, What are the current medicines or treatment?

You:  Only hbp meds and arthritis meds.

renal-onlinedoctor: okay  i see. I’d like to send you related info and advice. What is your Email address?

At this point, I ended the chat since I thought I might be deluged with emails if I responded.  Have I proven anything? Only that the online portion of dealing with an online doctor is extremely general.

Where are the questions about my weight? As I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obviously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates, the treatment of, CKD.”IMG_1398

And what about exercise? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I included the following from the American Kidney Fund:

“Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.”

Yes, it is possible the online doctor may have included such information in the emails(s) he wanted to send me, but how specific to my unique, complex medical situation would they have been… or how specific to yours?

Until next week,

Keep living your life!

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

“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….”

SlowItDownCKD 2015 Book Cover (76x113)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

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

Why Not Here?

Having had no particular medical issue of my own this week – finally! – and none for anyone else in the family, I was casting about for something I’d like to write about when I found this in my files. It’s from SBS, which is self-described as, “…multilingual and multicultural radio and television services that inform, educate and entertain all Australians and, in doing so, reflect Australia’s multicultural society.” You can find this particular article at http://www.sbs.com.au/news/article/2014/05/28/doctors-hope-new-test-will-arrest-kidney-disease-deaths.

Australia“’The State of the Nation: Chronic Kidney Disease in Australia’ report by Kidney Health Australia shows while one in 10 adults have kidney disease, only one in 100 know they have it. But Kidney Health Australia medical director Tim Mathews said that could be about to change thanks to a new take-home test distributed by pharmacists.

‘Pharmacists have an opportunity to identify people at high risk of kidney trouble – those who present with a prescription for diabetes and for high blood pressure are the two groups we’re focusing on,’ Dr Mathews said. ‘So that’s an opportunity for them to have a dialogue with the patient and see if they’ve had their kidneys checked, and if not, offer them a urine test which the patient then buys and takes home to test in their own privacy. At the moment we know in General Practice, only 40 per cent of diabetics are having a urine test each year – we would hope to push that number up by this program. ‘”Urine_sample

Of course, I know that we’re not in Australia and that this is from almost two years ago, but think of it! Here we are desperate to spread Chronic Kidney Awareness so that people will know to be checked for the disease while the Australians are already doing something about people getting tested.

Why can’t we do that? Or are we already doing that? If we aren’t, why not? It just seemed such a simple aid to informing people they need to be tested.

What is it

 

SlowItDownCKD 2015 Book Cover (76x113)

 

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I’ve written four books about CKD and I know I haven’t covered this possibility in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2, or SlowItDownCKD 2015. Why not? Because the idea is just so simple, so obvious, that I never thought of it. Let’s see if anyone else in the U.S. has.

Hmmm, I did find this from EurekAlert at http://www.eurekalert.org/pub_releases/2016-01/cpa-pkt012616.php :

“Pharmacists who screened at-risk patients for chronic kidney disease (CKD) found previously unrecognized disease in 1 of every 6.4 patients tested, according to a study to be published in the January/February 2016 issue of the Canadian Pharmacists Journal.”

Sorry, wrong country – although we’re at least on the right continent now. I think I just found one… nope, that’s in England. Wait, there’s AJKDsomething in the American Journal of Kidney Disease… oh, it’s an editorial proposing pharmacists keep on the lookout for those at risk for CKD. Will you look at that! This was proposed in 2004, a dozen years ago. Canada, UK, Canada. No, nothing for the USA.

I know my pharmacist is very, very careful to check that the drugs I’m prescribed are those that will not harm my kidneys. You’ve probably already read several of my blogs about that. In the last one, I wrote about how a doctor covering for my primary care physician would not listen when I told him I had CKD and that my pharmacist told me point blank not to buy the drug he prescribed, then called him to make certain he understood why this drug was not one for CKD patients. He didn’t listen to me; she did… and then made him listen to her.

On a personal note, we had an extremely quiet third anniversary since I had the flu and Bear had a new diagnose of his own to deal with. I’m gladIMG_2394 we’d gotten to the symphony beforehand and we’ll just have re-arrange the dinner out with some of the kids. We’ve got that little vacation in Texas to look forward to next week. I’m sure we can find a way to celebrate there. Thank you for your warm wishes. I was surprised at how many people remembered.

I’m lucky. I have never felt alone, not even with the CKD diagnose. But some of my readers have let me know how very alone they feel with their illness even though family and friends are supportive. That’s why I want to let you know about The National Kidney Foundation’s Peers. The following is from their website at https://www.kidney.org/patients/peers.

“Do you need help adjusting to life with kidney disease? Or want to learn more about treatment options? NKF Peers is a FREE, telephone-based peer support  program from the National Kidney Foundation.   The program matches those in need of support with a peer mentor who has  been through a similar situation. You’ll connect with your mentor through a free, private phone system so you won’t have to disclose your personal phone number….

About NKF Peers

  • A national, telephone-based peer support program from the National Kidney Foundation
  • Connects people who want support with someone who has been there
  • Helps people adjust to living with chronic kidney disease, kidney failure, or a kidney transplant.

Also offers support to those considering living kidney donation or who have been have been living kidney donors.

NKF-logo_Hori_OB

 

 

How do participants interact with each other?

  • Participants are connected through a toll-free, automated telephone system. No one discloses personal phone numbers or incurs long-distance charges.
  • The automated telephone system allows participants to leave voicemail messages for their partners and block calls at certain hours.
  • Telephone services are provided free-of-charge by the NKF.

To learn more: Call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org”

Of course, you can always drop a question or a comment on SlowItDownCKD’s Facebook page and I’ll research whatever you’re asking about… with the provision that you understand I am not a doctor and that you need to speak with your nephrologist before taking any action on my advice.kidney.jpg If it’s private, you can email me at SlowItDownCKD@gmail.com …with the same provision. By the way, I’m available 24 hours a day, seven days a week.

Do take a look at the new book. I’m really proud of this baby.

Until next week,

Keep living your life!

Sex Sells… Well, It Keeps Us Interested Anyway

National Kidney MonthHappy Monday, blog writing day, my favorite day of the week.  You know, this is the third week of National Kidney Month which brings quite a bit of kidney disease awareness activity with it. For example, this past Friday and Saturday, The National Kidney Foundation of Arizona held its 17th annual conference in partnership with The CadioRenal Society of America.

I attended on Friday, renal day, since Saturday – cardio day – was a bit too over my head. I had the good luck to run right into Dr. James Ivie, Director of Patient Services, as soon as I entered the building. After I apologized for not having a book for him this year (SlowItDowCKD 2015 is available in digital, but the print version won’t be ready until later on this month.), he told me how very successful the conference was this year, easily surpassing the number of attendees from the year before.

He was so right. I could see for myself that the place was crowded and people were talking. More than one vendor was more interested in my CKD writing than in selling me their product. I was surprised, but delighted. Then I started attending the sessions and found the same with other attendees and, again, was delighted.Kidney Arizona

But what delighted me most was how much I understood.  You see, the more I understood, the more I could bring back to you. As usual, presenter styles varied from the one who simply read the statistics on her slideshow graphs for us to the one who told anecdotes, asked for audience participation, and had us both laughing and highly interested.

Her topic?  Enhancing Intimacy and Sexuality. Her name? Robin Siegel. She is a licensed clinical social worker. Learn.org at http://learn.org/articles/What_Does_LCSW_Stand_For.html tells us “An LCSW, or licensed clinical social worker, is a professional who provides counseling and psychosocial services to clients in clinical settings.”

Ms. Siegel was actually presenting about how nephrology staff can be helpful in these areas, but quite a bit of her information was also useful for Chronic Kidney Disease patients themselves… or those that write about CKD.

Hmmm, her ideas sounded familiar to me. Sure enough, it seems I had been thinking along the same lines when I wrote the following in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

Book Cover“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…..

The 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. …

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

Ms. Siegel added to this by talking about possible medical intervention traumas, cultural values, and gender issues. What Is It and How Did I Get It? Early Stage Chronic Kidney Disease was written in 2010, although it was published in 2011. Transgender was hardly, if ever, mentioned in the news – medical or otherwise. It was almost the same for homosexuality. It’s a different world in 2016. We talk openly about sexuality. Well, let’s say many of us do. I really liked the way this presenter made it clear that these are simply part of some patients’ lives and must be treated respectfully, especially when dealing specifically with their sexuality.IMG_2867

We agreed about intimacy, too. More from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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….  The best advice I received in this area was make love even if you don’t want to.  Magic.”

Those last thoughts are purely mine, but Ms. Siegel did talk about the snuggling and hugging from a patient point of view: allowing, giving, getting.

Something else she introduced was the different cultural values in our present day society. That’s another thing that wasn’t as publicly prevalent as it is today. For example, certain cultures will not permit a male doctor if the patient is female. If you belong to one of these cultures, you can simply ask for a female nephrologist in the practice or for a referral to another practice with female nephrologists if yours doesn’t have any. (What???  In this day and age!!!!) According to one of my Muslim friends, there is a list of female doctors, including specialists, available in her community.

Other cultures will not allow eye contact. This is important for you to let your nephrologist know about so that he or she will not think you are avoiding topics if this is part of your culture. Sometimes written material such as handouts and pamphlets can allow you access to the same information you would have been told, too.

It seemed to me that Robin Siegel was making clear that there is no problem that can’t be attended to by your nephrologist or his/her staff – even sex and intimacy – with just a bit of adapting to whatever the patient’s (Oh, that means you and me.) sexuality and culture.

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I have been receiving all kinds of laudatory comments about The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since SlowItDownCKD 2015 was published in digital last week. I like how that works: publish a new book and there’s renewed interest in your others. Feel free to write reviews on any and all of my four CKD books.

Until next week,

Keep living your life!

Will You Take a Look at That!

Here we are again. Another Monday, another blog. Even bloggers passionate about their subjects can suffer the Monday blues, although in this case I’ll bet it has to do with my CKD reduced energy level. I’d just mentioned to Bear that all I want to do is sit in the easy chair he got me last year and read the book Abby got me for Christmas while drinking coffee… well, my remaining eight ounces for the day anyway.CoffeeCupPopCatalinStock

So I decided we’d do something a little different today. Back on March 5, 2012, I blogged about doctors being taught to be mindful. The blog was basically a New York Times article about just that at http://well.blogs.nytimes.com/2011/10/27/teaching-doctors-to-be-mindful/?smid=tw-nytimeshealth&seid=auto.

I’ve noticed your comments about your doctors missing this or that which made me realize – yet again – that the usual 15 minutes allotted to each patient simply may not be enough time to really observe what’s going on with you, the patient. But what could be done about that?

I was having brunch with a friend visiting from Dallas and her family when the subject arose. I wouldn’t be surprised if I were the one who brought it up. But what did surprise me was that as a research assistant at the Edith O’Donnell Institute for Art History, she was involved in this program. I 10341870_10103713883125341_1961496384992168845_nwas flabbergasted and knew I had to share this with you. (That’s my daughter, Abby, on the left with the author as they celebrated their Paris trip).

The Art of Observation: Art Museums Partner with Medical Schools to Teach Doctors How to Look

By Katrina Saunders

To all who have felt the healing power from a visit to your local museum, the benefits of the art of looking are currently being explored on a much larger scale by museum educational departments.  Partnering with their local medical schools, art museums across the country (and even Australia, Canada and the UK) have developed curricula to further the observational skills of medical students by looking at art.

The number of museums with these type of programs is fast growing with dedicated museum staff and medical school instructors collaborating on courses such as “Art of Observation”, which concentrates on close-looking at works of art in museum galleries, “Art of Form”, artist-perspective led learning and making of art, and “Art of Evaluation”, round-table discussions in which students describe their experiences.MOMA

The activity of looking is often, pardon the pun, over-looked when it comes to a medical student’s jam-packed education.  Yet the benefits of training a new generation of doctors to use their eyes in the means art demands is beneficial to all parties involved.  Through structured viewing exercises led by expert museum staff, medical students gain visual acumen, interpretative reasoning, and communication skills that can be applied to patient care.  Museums, in turn, can offer services that have the potential to save lives.

This type of programming began to surface in the past decade as exercises to increase visual literacy amongst medical students.  Physical examination is such a large part of clinical diagnosis so medical students must learn to observe quickly, accurately and without bias.  This especially becomes essential as technology and rush increasingly limit human-to-human interactions.

Dartmouth has a vibrant exchange taught between its Geisel School of Medicine and Hood Museum of Art.  During “The Art of Clinical Observation” workshops, the class is divided up and museum staff host four students at a time.  A cluster begins by studying one work of art for ten minutes, then each student describes it in detail to the rest of group only in terms of what is seen – without analysis or interpretation.  The process repeats through the day with different works of art and ends with a discussion on how slow, careful description can be applied to diagnosing images of patients.

HarvardIn 2008, Harvard published a groundbreaking study which showed that students who completed their innovative course “Training the Eye: Improving the Art of Physical Diagnosis” did in fact observe more than students who had not taken the course.  The implications of greater observational skills all point to positive: better diagnoses leads to better patient care, extends to more efficient medical spending, and essentially makes for better doctors.

Additionally, being part of these team-building, interdisciplinary conversations helps medical students embrace new types of thinking, ways of conversing and appreciation for different cultures.  In other words, in learning to appreciate all types of art, doctors can appreciate all types of people.

Foremost in the advancement of this knowledge is an invitational forum: The Art of Examination: Art Museums with Medical School Partnerships which will take place in June 2016 at the Museum of Modern Art in New York.  The forum is being spearheaded by Bonnie Pitman, Distinguished Scholar in Residence at the University of Texas at Dallas and Wendy Woon, The Edward John Noble Foundation Deputy Director for Education at MoMA.  The event will for the first time bring together art museum and medical professionals from all over the world to share information about their programs in a collaborative stage against the stunning backdrops of MoMA, the Metropolitan Museum of Art, the Frick Collections’ galleries.

Based on the desire for a deeper understanding of how programs can be improved to enhance clinical practice, results of the Forum will be broadcast on the University of Texas at Dallas Edith O’Donnell Institute of Art History website at https://www.utdallas.edu/arthistory.ut

Research continues to demonstrate the value of these programs, which have expanded to include a variety of topics such as empathy – how to respect and have difficult conversations with patients.  Evaluative methods are still being developed that will further outline the need for medical students to slow down and hone their looking skills.  The next time you visit an art museum, think of all the ways art plays a part in helping others, and be aware of how looking plays a big part of your health.

More fun reading:

http://news.yale.edu/2009/04/10/class-helping-future-doctors-learn-art-observation

https://news.wgbh.org/post/learning-medicine-looking-art

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2517949/

https://med.stanford.edu/news/all-news/2015/03/honing-the-art-of-observation-and-observing-art.html

Rather than make any cuts to Katrina’s article, I chose to defer all book and event news until the next blog. What is it

Until next week,IMG_1398

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!

Running, but Getting Nowhere

First things first, as usual: Happy Kwanzaa to those who celebrate this week long holiday. For those of you unaware of this particular holiday, Dictionary.com tells us it is

“a harvest festival celebrated from Dec. 26th until Jan. 1st in some African-American communities.”

AudreI was introduced to it by the wondrous Audre Lorde, my neighbor, best friend, and the poet laureate of NYS back on Staten Island in the ‘80s. While I miss her terribly since her death, what’s she’s taught me is part of who I am today.  Thank you, Audre.

Let’s run up to the end of 2015 and restless leg syndrome. (Well, that was an awkward transition, wasn’t it?) I have a new reader who is confounded by it, but can’t get a doctor’s appointment soon enough for some immediate answers at this time of year so let’s see what we can find out for him.

According to The National Institute of Neurological Disorders and Stroke (Don’t let that title scare you; this is just where I went for information) at http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them.”

While that makes sense, it doesn’t explain why a Chronic Kidney Disease patient might develop RLS. I went to Medscape.com at http://www.medscape.org/viewarticle/707972_4 for some sort of explanation.

“A disturbance of dopaminergic transmission has been postulated to underlie the development of idiopathic RLS, but the increased incidence in CKD might reflect hyperphosphatemia or iron deficiency.”

Whoa, Nellie (as my father used to say)! Let’s slow this down a bit.  I can see that “hyper” means over, and “phosphate” has to do with phosphorous, but how do you put it all together? MedicineNet.com did that for me.

dairy“An elevated level of phosphate in the blood. Higher-than-normal levels can be caused by ingestion of phosphate-rich foods, such as dairy products, or by kidney failure.”

Notice that kidney failure is not the only cause. So does that mean my new reader is eating too much high phosphorous food?  I don’t know. Dwayne, are you?

Being a newbie to all this, he may need a list of high phosphorous foods. Luckily, there is one in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages

ale                                                     beer

chocolate drinks                            cocoa

drinks made with milk                 dark colas

canned iced teas

 

Dairy Products

cheese cottage cheese                  custard

ice cream                                        milk

pudding                                          cream

soups                                               yogurt

 

Protein

carp                                                  crayfish

beef liver                                         chicken liver

fish roe                                            organ meats

oysters                                             sardines

 

Vegetables

dried beans and peas                   baked beans

black beans                                    chick peas

garbanzo beans                             kidney beans

lentils                                              lima northern beans

pork ’ n beans                                split peas

soy beans

 

Other foods

bran cereals                                   brewer’s yeast

caramels                                         nuts

seeds                                               wheat germ

whole grain products

Does this help any, Dwayne? Let us know.

Next question: What’s so bad about having high phosphorous levels in the blood when you have CKD?

Back What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the answer to that one.

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

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

The other possible cause of RLS in CKD (alphabet soup, isn’t it?) is iron deficiency. I wrote about that a bit in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf 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.’

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney

‘…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension.’

Digital Cover Part 2 redone - CopyThat was thought to be true when I researched for the book over three  [now almost four] years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.”

Be certain to make that appointment with your new nephrologist, Dwayne.  After reading today’s blog, write a list of questions for the doctor and have someone with you during your appointment to be sure you ask all your questions and understand the answers. Keep us posted.

Mini-contest. I have one lonely copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 hanging around my office all by itself, just looking for a new home.  Be the first to comment on today’s blog and you’ll have yourself a new book.

Wow! Only three days left in 2015.

Until next year,

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!

Are you kidding????? Again??????

MenorahGuess what I have.  No, it’s not a Chanukah gift from Bear (although I’ve already gotten one of those). Hang on, I’ll give you a hint: I got it even though I took my annual flu shot.

Yep, this is yet another year I’ve come down with the flu despite having been vaccinated.  I realize that the vaccine only covers the anticipated strains of the flu for a particular season, but how is it I manage to get that strain… the unanticipated one… so often?

This week is the beginning of Chanukah. For those of you who celebrate, I wish you the joyous glow of the season all year round. But wait, it’s also National Influenza Vaccination Week.

According to the U.S. government’s Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm,the shot

“National Influenza Vaccination Week (NIVW) is a national observance that was established to highlight the importance of continuing influenza vaccination…. The timing of flu is very unpredictable and can vary in different parts of the country and from season to season. Most seasonal flu activity typically occurs between October and May. Flu activity most commonly peaks in the United States between December and February.”

We’re deep into it now. Well, then, why do I need to keep taking this vaccine that seems to be the wrong one for me each year?

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells us,

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

This tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc. was even more direct.

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

fit the fluIt’s here now. So what do I do about it? I was truly surprised at the OTC (over the counter) medications my former nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken ten Tylenol in the last eight years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  (Not the one with the ‘d’ on the label; that could raise your blood pressure.) Then there was the Benedryl that came with a caution not to take it until I was going to sleep. It would knock me out. Oh, and the Mucinex.

The one recommendation I got a kick from was hot tea with lemon and honey (I actually asked him if he knew my mother, but I don’t think he heard me.) laced with whiskey. This for someone who doesn’t drink?

It occurred to me (I do forget this and need to remind myself repeatedly) that when the media refers to the elderly in their public service announcements about the flu, they mean people over 65.  That means me.  I had not been paying attention to any health warnings for the elderly because they didn’t apply to me, or so I thought.  Hah!  Reality smacks me in the face again.

Let’s say you’re one of the lucky ones who has not yet gotten the flu and want to keep it that way. According to Healthfinder.gov, Office of Disease Prevention and Health Promotion, you can protect yourself by doing the following, in addition – of course – to being vaccinated:the flu ends with you

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

Note: There is a technical error on their page right now, so you won’t be able to click through.

Knowing me, you’ve probably figured out I just couldn’t watch movies and read while I was sick. Nope, I needed to work. So I did. The print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 now has an index. This new, improved version (Sorry, no crackerjack prize in the box. Uhhhh, you won’t get that joke unless you’re a bit older.) should be available on both Amazon.com and www.BarnesandNoble.com this week.

That is in plenty of time for Chanukah. Remember, there are eight days that the holiday is celebrated. And I’m working on the index for print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, so it will be available before Christmas.

IMG_1398

I like giving you gifts. If you already bought the print copy without the index, email me at SlowItDownCKD@gmail.com and I’ll be very happy to send you the index.

And let’s not forget about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Consider that an easy introduction for the newly diagnosed and their friends and family.

Book CoverI think I feel another The Book of Blogs: Moderate Stage Chronic Kidney Disease book coming on. Eeeek! Let’s wait until after the New Year to deal with a title for that one.

I wanted to remind you to use the search function if you have the digital version of any of the books. If you need a little reminder or tutorial as to how to use that, email me. I’ll be glad to help.

This year is flying by. The months flew by. Even today flew by.  Is it that I’m older and everything takes longer?  Or is it that I’ve learned to make the most of the hours in the day…month…years. Whatever it is, thank you for letting me share some of your time each Monday.

Until next week,

Keep living your life.

Tempus Fugit Iterum or Time Flies When You’re Having Fun, Part 2

Who would have thought there was so much information to share about colonoscopies? And who thought it would actually be interesting? Not me. But acting like a grown up and taking care of my health is both informative (We all know I research everything. It seems to be a compulsion.) and interesting. One site brings me to another.

colonoscopySince last week, I’ve gotten a few questions about the topic. One is how often should this be done? As we learned last week, most people – those without any risk factors – start at the age of 50. I started a bit later than that and had normal results, so was told I wouldn’t need one for another ten years. Yay!

That’s when things changed: sometime during the second decade after the first colonoscopy. This was almost five years ago.  The change was that several colon polyps were removed this time; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma).

Apparently, bleeding colon polyps are troublesome because they can be the source of your fatigue if you already have low levels of iron as most CKDers do. At least, that’s what my former nephrologist said. Although they were bleeding, removing them did not stop the fatigue.  Maybe it was the sleep apnea…or maybe it was just plain being a Chronic Kidney Disease patient.Bleeding

Now, about that adenoma. AboutHealth at http://coloncancer.about.com/od/glossary/g/Adenoma.htm defines an adenoma in the following way.

An adenoma is a pre-cancerous (benign) growth that may occur in the colon. Adenomas arise from or resemble glands and can lead to colon cancer. This means that if left untreated, some adenomas eventually will develop into colon cancer. If an adenoma becomes cancerous, it is called an adenocarcinoma. Fortunately, adenomas typically are easy to find and to remove before they become cancerous, during routine colon cancer screening tests, such as adenomaa colonoscopy or a flexible sigmoidoscopy.

The American Cancer Society at http://www.cancer.org/cancer/news/specialcoverage/7thingstoknow has an easily understood, easy to read explanation of the whole process of colonoscopy and explains more than I have here.

While it sounds like an awful procedure, more often than not, you’re anesthetized first, both to make sure you don’t move (which might cause a perforation) and for your own comfort.

You are a medically comprised patient.  I’ll repeat that – you are a medically comprised patient.  As such, you need to be treated differently as far as anesthesia. Two things are very clear about anesthesia for us.

  1. The dosage of the anesthesia may have to be modified and
  2. You must let your doctor know on your first visit that you have Chronic Kidney Disease.

I was both disgusted and fascinated by the photos my gastroenterologist sent me after the procedure.  I saw the colon polyps.  I saw the inside of my colon. I simultaneously wanted to get as far away from those revolting pictures as I could AND examine them carefully to see just what was going on inside me.

I keep using the term colon polyp, but haven’t explained it yet. MedicineNet at http://www.medicinenet.com/colon_polyps/article.htm#what_are_colon_polyps will help us out here.

Colon polyps are growths that occur on the inner lining of the large intestine (colon) and usually protrude into the colon. Polyps form when the genetic material within the cells lining the colon changes and becomes abnormal (mutates). Normally, the immature cells lining the colon are programmed to divide (multiply), mature, and then die in a very consistent and timely fashion. However, the genetic changes that occur in the lining cells prevents (sic) the cells from maturing, and the cells do not die. This leads to an accumulation of immature, genetically abnormal cells, which eventually results in the formation of polyps. The mutations may occur as a sporadic event after birth or they may be present from before birth.

I’ve got to be honest. I don’t care how I got mine. I.simply.want.them.gone. It’s come home to me lately that I am closer to 70 than 60. It’s also come home to me lately that I love my life and want to keep it as long as I can.IMG_2867

Last week, I touched on the prep having to be tailored for your CKD, too. Here’s a warning from The National Kidney Foundation at https://www.kidney.org/atoz/content/oralsodium

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy.

The warning relates to the use of bowel cleansing agents, called sodium phosphate (OSP) products as laxatives or in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. These products can cause phosphate nephropathy.

On the other hand, The National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678056/  has suggestions, although the parentheses are mine.Miralax

For early chronic kidney disease, PEG (4 L polyethylene glycol) or SPMC (2 L sodium picosulphate plus magnesium citrate) are acceptable. Cases with late chronic kidney disease without dialysis should be prescribed with PEG or PEGA (2 L PEG plus ascorbic acid). SPMC have a risk of hypermagnesemia in patients with kidney disease without dialysis.

Obviously, that’s something to discuss with your nephrologist. By the way, one polyethylene glycol product is Miralax, an over the counter medication. The picture above does not indicate an endorsement of the product.

What is itHere I am in NYC, not spending all that much time thinking about CKD except for the sleep, diet, exercise, and lack of stress (nothing else, though) and having a grand old time with my daughter. In other words, I haven’t paid any attention to the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. That’s the book Geo was reading in last week’s blog. Do let me know if you’re one of the winners so we can celebrate you.

Oh, and don’t forget about that book’s twin younger siblings.IMG_1398

Until next week,

Keep living your life!

Time Flies When You’re Having Fun

IMG_1625Last week, Bear and I were in Las Vegas for a mini-family reunion. It was my mother’s nephew’s… let’s just say it was a combination of blood relatives and those we consider relatives without the blood connection.

What with the complimentary hotel room at the absolutely gorgeous SLS (which we understand was formerly the Sahara) and the gift of tickets to the outrageous show ‘Diva’ (male impersonators of female celebrities), an edifying tour of The Neon Boneyard, a family Las Vegas style buffet at Red Rock Casino, and a leisurely stroll down the overly-stimulating Fremont Street, we had a wonderful time.

I even got in my usual 20 minutes of gambling. I don’t really have tolerance or a liking for it, but it seemed the right thing to do since that was why the hotel gave us the two nights gratis. I won.IMG_1638

But in another way, I lost. My cousin Amy wasn’t there. She was part of this family. Her husband was there. Her uncle was there. Her mother and brothers were, but she wasn’t.  Three years ago she died of cancer.

She died within one week of my dearest, closest buddy on earth who also died of cancer. My buddy died of colorectal cancer. She’d refused any contact with the medical community for the last decade of her life and she paid the ultimate price for it.  A colonoscopy could have saved her life.

Almost five years ago, I had a colonoscopy… and now it’s time to have one again.  While this is not my favorite activity, I am willing to do so since cancer runs in my family and I’ve already had a bleeding polyp. These are not issues I usually share and, yes, it’s a bit awkward for me but if I can convince even one person who’s presently nauseated just thinking about colonoscopy to have one, it’s worth my personal discomfort.

While the term is becoming common, not everyone knows what a colonoscopy is. WebMd at http://www.webmd.com/colorectal-cancer/colonoscopy-16695 explains.

colonoscopy Colonoscopy is a test that allows your doctor to look at the inner lining of yoularge intestine (rectum and colon). He or she uses a thin, flexible tube called a colonoscope to look at the colon. A colonoscopy helps find ulcerscolon polyps, tumors, and areas of inflammation or bleeding. During a colonoscopy, tissue samples can be collected (biopsy) and abnormal growths can be taken out. Colonoscopy can also be used as a screening test to check for cancer or precancerous growths in the colon or rectum (polyps).

The colonoscope is a thin, flexible tube that ranges from 48 in. (122 cm) to 72 in. (183 cm) long. A small video camera is attached to the colonoscope so that your doctor can take pictures or video of the large intestine (colon). The colonoscope can be used to look at the whole colon and the lower part of the small intestine. A test called sigmoidoscopy shows only the rectum and the lower part of the colon.

Before this test, you will need to clean out your colon (colon prep). Colon prep takes 1 to 2 days, depending on which type of prep your doctor recommends. Some preps may be taken the evening before the test. For many people, the prep for a colonoscopy is more trying than the actual test. Plan to stay home during your prep time since you will need to use the bathroom often. The colon prep causes loose, frequent stools and diarrhea so that your colon will be empty for the test. The colon Normalprep may be uncomfortable and you may feel hungry on the clear liquid diet. If you need to drink a special solution as part of your prep, be sure to have clear fruit juices or soft drinks to drink after the prep because the solution tastes salty.

You have CKD; this is not the prep you will be using.

The National Institute of Health at https://www.nlm.nih.gov/medlineplus/colonoscopy.html suggests you have a colonoscopy for the following reasons.

  • To look for early signs of cancer in the colon and rectum. It may be part of a routine screening, which usually starts at age 50.
  • To look for causes of unexplained changes in bowel habits
  • To evaluate symptoms like abdominal pain, rectal bleeding, and weight loss

Let’s talk about prep a bit more. You cannot take the usually prescribed Fleet enemas or anything with oral sodium phosphate. Get it?  Sodium?  Phosphate?  Both bad news for CKDers.  One possible alternative is a polyethylene glycol (PEG) solution such as Miralax.  As usual, check with your nephrologist.

DucolaxDucolax is also often prescribed as prep for the procedure, but everydayhealth.com at http://www.everydayhealth.com/drugs/dulcolax-laxative makes clear it’s not automatically safe for CKD patients. (Bisacodyl is the compound name; Ducolax is the brand name.)  Take note of the first item on the list.

If you have any of these other conditions, you may need a dose adjustment or special tests to safely use bisacodyl:

  • kidney disease;
  • trouble swallowing;
  • a history of bowel obstruction, diverticulitis, ulcerative colitis, or other intestinal disorder; or
  • if you are taking a diuretic (“water pill”).

This is decidedly turning into a two part blog.  More on the curiously challenging concept of colonoscopy next week.

We’re not the only ones who took a vacation. Here’s a picture of the man behind the title of Loyal Reader, Geo De Angelo, on his vacation:

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Meanwhile, back at the ranch (better known as my office), I wonder if you’re one of the winners in the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseWhat is it. You know, the GiveAway in which I paid for ten of each eighth book bought. If you are, please announce yourself either here in the comments section, on the Facebook page – https://www.facebook.com/WhatHowearlyCKD – or on Twitter @SlowItDownCKD so we can publicly congratulate you. If you haven’t seen the GiveAway yet, you can at http://www.amazon.com/What-How-Did-Get-Chronic/dp/1457502143/ref=sr_1_1?ie=UTF8&qid=1445197041&sr=8-1&keywords=What+Is+It+and+How+Did+i+gET+IT%3F+Early+stage+chronic+kidney+disease.

If you missed it, no worries.  I’m presently working on a different sort of GiveAway with a certain Facebook Kidney Disease Support Group.  More on that next week when I have all the details. Oh, and let’s not forget about the twins (presently being indexed) …IMG_1398

Until next week,

Keep living your life!

Clogged Up?

That’s a good question and one I received from a reader just recently. Only this time, it doesn’t have to do with your nose or chest during a cold or the flu, but rather with cholesterol in your blood vessels.

For some of us, this is basic information, but for others… well, let’s just say we never bothered to find out about our cholesterol. After all, our doctors were managing this for us, weren’t they?

Ehhh, not my way. I like to be fully informed about what’s happening inside my body where I can’t see it. Let’s make that ‘especially where I can’t see it.’

What is itLet’s start with the basics from What Is It and How Did I Get It? Early Stage Chronic Early Disease.  This is the definition of cholesterol offered there:

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of Dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good.  So? Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti of The National Kidney Foundation explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

Digital Cover Part 2 redone - Copy HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol.  VDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.  Last week’s blog may help with that.

Exercise will help, too. This is from Everyday Health at http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx   and will give you an idea of how to start… just in case exercise is not in your vocabulary at this time.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

water walkingPlay around with the list. For example, I am not a water person and simply will not swim, although I’ve been known to water walk at the drop of a hat.  I love to walk and do as much as I can whenever I can.  Of course this is not a complete list.  Consider it a nudge to get started.

If life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as

 any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition. Is the risk of kidney failure or heart attack so great that you need the drug?  You might want to consider it then. But if it is being prescribed because “That’s protocol,” I would urge a serious heart to heart (good choice of words here) with the prescribing doctor or maybe even a second opinion.

4wedding

I hope you’ve enjoyed your cholesterol primer while I’m on my second attempt at a delayed honeymoon and busily avoiding all those goodies that are just plain bad for my cholesterol levels.

Until next week,

Enjoy your life!

Aha! It is Possible.

What is itI’ve written periodically about the difficulties I was having combining the renal diet and the prediabetes diet. My usual renal dietician was unavailable for this year’s second (Thank you, Medicare.) appointment, so I saw someone else… and am I glad I did!

My first renal dietician introduced me to weights, measures, and what to eat in the first place.  Needless to say, this was all new to me and I wasn’t so happy with all these numbers, but she calmly, patiently kept explaining until I understood.  By the way, she’s quoted in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

This is the renal diet she devised for me as a brand new Chronic Kidney Disease patient. It’s based on The Northern Arizona Council on Renal Nutrition’s diet.

Scan0003

(Seems I see things off kilter. Scan0002

Just tilt your head a bit, if you will.)

As you can see, it was very exacting… just what I needed when I was so confused with all this new information and having to completely change the way I ate.

But then it became clear I also suffered from pre-diabetes, so my PCP sent me for diabetic counseling. Yes, I did know quite a bit already, but I did not know everything about diabetes…specifically, how to combine the two diets.  This is something my first renal dietician, good as she was, couldn’t answer. Well, maybe the diabetes counselor could.

Remember, this time we were not dealing with keeping sodium, potassium, and phosphorous under control to spare the kidneys. This time we were concerned with blood sugar.

I got some useful suggestions about herbs and spices I could use instead of salt.  This was not helpful for me since I’d already done some successful experiences with herbs and spices and discontinued the use of salt eight years ago when I was first diagnosed with CKD.

I was warned against hypertension and urged to keep it under 140/80, something I’d already been doing since my CKD diagnose. I was urged to avoid stress and work on weight management.  Again, been doing that for years.  Then I was educated about the value of sleep… again, nothing new here. But what about combining the two diets?

Scan0001Well, we did get to a meal plan. But it was unacceptable with the CKD. I was on a 1200 calorie diet to lose weight. Here I was urged to eat 1500 calories to lose weight and 1843 to maintain. But what really dissuaded me from adopting this meal plan was that it called for over four servings of fruit and four of vegetables when the renal diet limited me to three of each. I wasn’t willing to ingest that much phosphorous/potassium. In addition, it called for six fats a day, whereas the renal diet calls for five.

*sigh* So that wasn’t the way to combine the renal and pre-diabetes diets.

But then I went to the second renal nutritionist just last week and started to understand how to combine the two diets. Finally! She dealt solely with carbohydrates without specifying whether they be fruit, vegetable or grain. She explained that 15 gms. is a carbohydrate portion or choice. She explained that they should be paired with protein or fact to control my blood sugar. Now that was news to me.

While the diabetes counselor offered the same information about eating three meals with two snacks in between, it didn’t work for me because of the amount of food – most with potassium and phosphorous counts that were too high for the CKD – but here I was eating what I could with specific carbohydrate distributions for each meal or snack.

black breadIt was the same portions as the CKD diet, only with the gram count added.  For example, a slice of bread, 1/3 cup cooked pasta, 1/2 cup cooked cereal, or 3 cups of popcorn (no salt) are each one portion of my grain allotment daily just as they are on the prediabetes diet. The three allotments of fruit and vegetable, too. While I don’t care for dairy, I could still have the same amount of milk – if I drank milk, that is.  I had three carb choices at breakfast and lunch, but two at dinner.  There was also a carb unit for each snack.

There were no carb units assigned to meats or fats because they don’t affect blood sugar, but I still needed to pay attention to them for the CKD.  Well, that could be done just as I’d done it since my diagnosis: little or no red meat and keep it to five or six ounces. As for the fats, same cautions as with the CKD diet: avoid saturated fats and eliminate trans fat.

The hardest part about combining the two diets for me is consistency.  For the pre-diabetes, eating at the same time each day is preferable. I was used to eating whenVictorian clock I got hungry… before I saw the diabetes counselor. Then after taking her advice, right after I woke up and no longer than six hours – at the most – between meals or meals and snacks.

While that’s certainly feasible, I’m a writer.  I don’t like to leave the computer when I’m popping.  But now I do.  If I want to keep on being a writer, if I want to keep on being alive (okay, so that’s a bit dramatic), I have to take care of myself. So now I eat more often, try to be consistent about when I eat and sometimes even set an alarm on my phone to remind me to get up and go eat something. I’ll live. Well, that is the point: to live.

By the way, I’m having such fun devising the index for both The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 that I wonder if maybe, just maybe, I’m taking a little more time than I need to.  It’s okay to think that’s weird, you know. I’ve heard it before.

IMG_1398

Until next week,

Keep living your life!

 

They’re Not Two Separate Things

I know someone who is mentally ill.  You do, too, although you may not be aware of it. PTSD, bipolar, personality disorder, poor impulse control, schizophrenia, braindepression, anxiety disorders, obsessive-compulsion, even eating disorders. I could go on and on with diagnoses we know nothing about when we meet the person. (Well, maybe we would with an eating disorder.) And why should we?

With medication, this person can function in the world… and function well. For those of you who are successfully treating your psychiatric illness holistically, whatever it is you are taking or doing that works for you will be included in the category of medication for the purposes of this blog.

But what if the person is not taking the medication necessary? What if they’re not and they have CKD? What if they are and have CKD? How does that affect their kidneys?

I came across a 2002 grant proposal on the National Institutes of Health site at http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-02-009.html which made clear that there is a correlation.

“There is substantial evidence that severe chronic illness may be associated with and exacerbated by co-existent mental disorders such as depression, anxiety NIHdisorders, schizophrenia, and eating disorders.  Nonetheless, few studies have addressed the natural history and consequences of co-existent mental disorders on chronic diseases of interest to the NIDDK, such as diabetes mellitus, chronic renal disease and obesity and eating disorders.”

The person I know has two parents with CKD. That means he has to be extra vigilant about preventing CKD. But can he with the impulsive, irrational thinking he occasionally experiences?

One of the many complications of Chronic Kidney Disease according to The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/complications/con-20026778 is

“Damage to your central nervous system, which can cause difficulty concentrating, personality changes or seizures”

Difficulty concentrating.  Personality changes. Just as in mental illness.

Let me talk about that term a bit. By mental illness, I mean a psychiatric condition rather than a physical one, but one that requires daily treatment, just as diabetes or CKD does. You watch your diet, don’t you? And try to stay away from stress? There’s another kind of daily attention psychiatric patients need to adhere to.

And here’s where it gets muddled. Just as CKD, a physical condition, can cause mental problems, a psychiatric condition can cause physical conditions.  The two are wrapped up in each other. You can’t divorce the physical from the mental or vice-versa. You are one person with all these interrelated parts.

Mental illness is far more prevalent than you think… and that’s with its being ‘out of the closet,’ so to speak, in recent years. The Centers for Disease Control’s Fact Sheet about mental health surveillance at http://www.cdc.gov/mentalhealthsurveillance/fact_sheet.html  contains the following statement.CDC

“According to the World Health Organization, mental illness results in more disability in developed countries than any other group of illnesses, including cancer and heart disease. Other published studies report that about 25% of all U.S. adults have a mental illness and that nearly 50% of U.S. adults will develop at least one mental illness during their lifetime.”

Let me make it worse.  This was in 2002, 13 years ago.

In 2012, the CDC had this to say about mental illness and chronic disease:

“One common finding is that people who suffer from a chronic disease are more likely to also suffer from depression. Scientists have yet to determine if having a chronic disease increases the prevalence of depression or depression increases the risk of obtaining a chronic disease.”

This is from a study about chronic disease and mental health in the workplace. You can read more about that at http://www.cdc.gov/nationalhealthyworksite/docs/Issue-Brief-No-2-Mental-Health-and-Chronic-Disease.pdf

I know little about medications for mental illness except for those prescribed for my friend.  As an example of how drugs for psychiatric conditions may or may not interact with your physical ailments, let’s talk a bit about his drugs.

zyprexaWhen my bipolar friend has a manic episode, an anti-psychotic – Zyprexa (generic name Olanzapine) – is prescribed. WebMD at http://www.webmd.com/drugs/2/drug-1699/zyprexa-oral/details# tells us

“This medication can help to decrease hallucinations and help you to think more clearly and positively about yourself, feel less agitated, and take a more active part in everyday life.”

Okay, sometimes my friend needs that, but there are also things he doesn’t need.

glucose“This drug may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Tell your doctor immediately if you develop symptoms of high blood sugar, such as increased thirst and urination. If you already have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication, exercise program, or diet.

This drug may also cause significant weight gain and a rise in your blood cholesterol (or triglyceride) levels…. These effects, along with diabetes, may increase your risk for developing heart disease. “

Not so great for someone that has two parents with CKD, one with CKD caused by diabetes. As for the cholesterol or triglyceride levels,  we could be getting pretty close to heart disease here, as mentioned above. Nothing about the kidneys, yet diabetes is the leading cause of CKD.

What else was he recently prescribed? Oh, yes, lithium.  He’s been taking that off and on since he was 14 and first diagnosed with bipolar disorder. Drugs.com at http://www.drugs.com/sfx/lithium-side-effects.html made me weep – not that this was going to help anything. I keep reminding myself that this is not usual when taking the drug, but my mind keeps placing the image of his two CKD parents before me.

“Moderate reversible increases in blood urea nitrogen and serum creatinine as well as proteinuria have been observed in patients with lithium toxicity. Rarely the decreases in glomerular filtration have been persistent. A variety of renal effects have been reported and include glomerular sclerosis, interstitial fibrosis, chronic interstitial nephritis, nephrotic syndrome, renal tubular acidosis and tubular atrophy.”Glomerulus-Nephron 300 dpi jpg

Sometimes you need to take a risk to save your life. I’m sure that’s what my friend’s doctors are doing here. I’ve known him all his life. I hope they’re doing the right thing.

On a more positive note, Amazon tells me all three books are now available in the Japanese market as well as being available in Europe and other areas.  Nothing like getting the word about CKD Awareness out to the entire world.IMG_1398What is it

Today is Labor Day. Thank you to all those union organizers that were jailed repeatedly- like Benjamin Binenbaum, my maternal grandfather – for the advantages they won for us.

Until next week,

Keep living your life!labor day

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!

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!

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

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!

 

A Cautionary Tale 

Memorial DayToday is Memorial Day here in the U.S. It’s a celebration of our fallen warriors, the ones who fought for us so we wouldn’t have to fight for ourselves… and it began as a celebration of freed slaves honoring those who fought for their freedom way back in 1865. As Time.com at http://time.com/3894406/who-invented-memorial-day/ phrases it:

On May 1, 1865, freed slaves gathered in Charleston, South Carolina to commemorate the death of Union soldiers and the end of the American Civil War. Three years later, General John Logan issued a special order that May 30, 1868 be observed as Decoration Day, the first Memorial Day.

I married a retired military man. Memorial Day has had more meaning for me in the last eight years than ever before in my life.  It’s been a revelation, as our wedding invitation stated:

The Retired Lieutenant Colonel

Paul Arthur Garwood

and

The Former Wannabe Hippie4wedding

Gail Rae

Invite you to our wedding reception

Thank you again to all those who gave their lives so I wouldn’t have to.

Being a bit dramatic here, I also sort of saved my own life last week by saving my kidneys from further damage.  I know, I know. There’s no comparison, but it sure is a good way to get into today’s topic.

I wrote about dreaming about my bladder last week.  Well, I decided I needed to take that dream a bit more seriously. Off I went to my local pharmacy for an over the counter (OTC) urinary tract infection (UTI) kit.

I chose the Azo Brand because it is

the same urinary tract infection test used in many doctor’s offices, to determine if the bacteria that cause a UTI are present. {The description continues.} Then call your doctor with the results. The most reliable, over-the-counter UTI home test available, AZO Test Strips offer two UTI tests in one – including both Leukocyte (white blood cells) and Nitrite tests – which makes them more reliable than nitrite-only tests. (Doctors look for Leukocytes as well as Nitrites in diagnosing UTIs.)

test-strips-right_3Leukocytes are higher when you are fighting an infection. Unfortunately, that’s any infection. So what about nitrites?

When the urinary tract is infected by harmful bacteria then it leads to the development of nitrites as a byproduct. The kidneys are responsible for filtering the blood and for the elimination of unwanted waste materials from the body. However, they are incapable of filtering out the nitrites. The nitrites can however travel from the kidneys into the bladder and get stored there. They are then passed out along with the urine. Therefore the presence of nitrites in urine is generally an indication of the presence of a urinary tract infection.

Thank you for that information, Diseases List at http://diseaseslist.org/nitrites-in-urine/  Notice our kidneys are NOT at fault for once.

So far, so good.  I mean bad.  You take the test by urinating on a dipstick.  First you urinate for a second or two, then hold the dipstick under the urine stream, and then sort of mop up the excess urine.  Pay attention when you do this or it can get messy.

There were three test strips with accompanying color charts in the box.  I took all three. (Did I ever tell you about a family member who took the same OTC pregnancy test a dozen times just to be sure?  This doubt must run in the family.) You guessed it. All three were not just positive for UTI, but highly positive.

As you know, doctors don’t prescribe medication over the phone so I tried to make an appointment with my primary care doctor.  She is much sought after and had no openings that week, much less that day. She is part of a practice so I took an appointment with another doctor in the practice, one I had seen a time or two before under the same circumstances.

He had my chart in front of him.  I was wearing a medical alert bracelet. I told him three times I had Chronic Kidney Disease. In addition to ordering ciprofloxacin 250 mg. – which is safe for certain stages of CKD for certain periods of time at certain dosages – he ordered phenazopyridine 200 mg. for the pain. He kept talking about not being alarmed when it changed the color of my urine.

I didn’t feel like he’d heard a word I said.  I wasn’t too worried, because I always check with the pharmacist before taking any new medication.  She was alarmed, told me not to buy this medication, and that she would be contacting this doctor to tell him prescribing phenazopyridine for anyone with CKD was inappropriate.  This is the second time this has happened since I was diagnosed with CKD.

The National Institutes of Health warn that you tell your doctor if you’ve had kidney problems should he/she prescribe this drug.  I did… a NIHminimum of three times. This is what Drugs.com at http://www.drugs.com/mtm/phenazopyridine.html had to say about this pain reliever.

What is the most important information I should know about phenazopyridine?

You should not use phenazopyridine if you have kidney disease.

Okay, beating a dead horse here (I’m just so damned annoyed!), so let’s see if we can figure out why CKD patients should not be using this drug. Uh-oh, MedicineNet at http://www.medicinenet.com/phenazopyridine-oral/article.htm tells us

Although the exact mechanism of action is unknown, phenazopyridine is thought to provide relief of symptoms of UTIs by acting as a local anesthetic on the lining of the urinary tract.

All right, let’s try this another way then.  Why shouldn’t CKD patients take this drug? After looking at Wikipedia – even taking into account that anyone can edit these entries – I’m wondering why anyone would take it at all. It’s a form of Azo dye.

Less frequently it can cause a pigment change in the skin or eyes, to a noticeable yellowish color. This is due to a depressed excretion via the kidneys causing a buildup of the drug in the skin, and normally indicates a need to discontinue usage.

kidney functionWhat! Exits via the kidneys? Excretion can be depressed?  Nope, not for me, not for you either. Take a look at http://en.wikipedia.org/wiki/Phenazopyridine

Here’s the caution: sure we trust our doctors and those doctors they trust, but check with your pharmacist, too.

Hey, where are the weirdest places to read my CKD books entries?  We got some really weird ones, but we want to see yours.  The contest runs until the end of the month.  That’s plenty of time to snap a picture and post it. Not on FB?  Include it as a comment on the blog or email it.  You can even post it on Twitter.Digital Cover Part 2 redone - Copy

Book Cover

Until next week,

Keep living your life!DIGITAL_BOOK_THUMBNAIL

Sailing, Naturally

Wow!  I just spent the past three days at a Landmark Wisdom Unlimited course and discovered that my already terrific life is even more than terrific than I thought. The theme was loosely, “What do you like about your life?” I was one of those that just kept going and growing my list again and again. Sharing Chronic Kidney Disease awareness was high on that list.

Talking about sharing, I casually mentioned to my daughter Nima – researcher par excellence – that I was looking for information about natural Nimapreventatives and/or cures for sea sickness.  Most of today’s research came from her immediately jumping on my comment.  Then I casually mentioned to her that she might consider a job as a writer’s research assistant.  She’s a talented person in many areas (I guarantee you this is not just mother pride), and this is one of them.

Bear and I are still about six weeks out from my very first cruise.  I’ve managed all the business, such as the tickets, the land excursions, the hotels for before and after, etc. What I’m still working on is the cautions about motion sickness made by my sister-in-law – Judy Peck. Last week I wrote about over the counter medical solutions and their relationship to CKD.  This week, we go the natural path.IMG_0959 (1)

That said (written), I must caution you in my turn.  Natural aids have neither been tested nor approved by the Federal Drug Administration.  Even if you’re not in favor of the FDA, remember that dosages and timing of natural aids have not been tested either.  Also, see page 87 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

In other words, if anything in today’s blog catches your interest, please check with your nephrologist before you even think of taking whatever the product is.  I am not a doctor, have never claimed to be one, and want you to understand that you and your nephrologist are the final arbitrators of what is safe for your kidneys and what is not.

Ready?  Here we go. First off, we have WebMD at http://www.webmd.com/a-to-z-guides/acupressure-bands-for-motion-sickness-topic-overview. This is the one that caught my eye right away.

These bands use pressure, electricity, or both to stimulate the P6 acupuncture point. This point is located about two finger-widths from the crease on the underside of the wrist. The elastic bands usually have a raised surface that applies pressure on the wrist. Practitioners of acupuncture and acupressure believe stimulation of this point may stop nausea and vomiting.Adult Pack

Reminder: this is not an endorsement of this particular brand, simply a representation of what the band looks like and how it’s used.

Neither side effects nor effectiveness have been proven, so I’m wondering how I can test this before we cruise.  In New York, I would have jumped on the Staten Island ferry.  Wait, I never got seasick on the ferry, so that wouldn’t work.  Hmmm, I didn’t get seasick on the cruises around Manhattan Island either.

Maybe I’m one of those people who just doesn’t get seasick. But just in case you are, I’ll write about what else Nima found for us.

Many thanks to both my daughter for finding this and the HerbalShop.com at http://herbalshop.com/Acupressure/Acupressure_12.html for these

charts showing the acupressure points that can help.

Again, I don’t see how this can harm the kidneys, but I do urge you to talk with your nephrologist beforehand.  I found an equal number of articles in favor of and opposed to acupressure in the treatment of CKD, but none about using it for seasickness if you have CKD.  Interesting.

Now I’m wondering if this is my favorite natural seasickness aid. Of course, you can use a mixture of methods.  By the way, you don’t need to massage all these pressure points.  One or two may do the trick.

Nima also found an interesting (I think) article on yoga for seasickness on The Art of Living site at http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-motion-sickness. However, I have to admit my ignorance.  I understood very little of it since it mentioned positions a non-yogi – like me – would have to research and probably, more realistically, learn from a teacher – say as in a class.

The article didn’t mention CKD so I attempted to research yoga + chronic kidney disease + seasickness.  That didn’t work, so I kept rearranging the order of the search terms and still got no hits. I don’t see how yoga can hurt, other than sprains and strains if it’s all new to you, but I hesitate to say this is okay when I’m not your nephrologist.

Then there was this on Ask Dr. Mao at http://www.askdrmao.com/questions-and-answers/ginger-for-nausea/

Ginger has been used as food and medicine for millennia. Ginger’s modern use dates back to the early 1980s, when a scientist named D. Mowrey noticed that ginger-filled capsules reduced his nausea during an episode of flu. Subsequent research ultimately led to approve ginger being used as a treatment for indigestion and motion sickness.

Cup of Tea in MorningGinger is typically not as effective as standard drugs for motion sickness, but it has the advantage of not causing drowsiness. Some physicians recommend ginger over other motion sickness drugs for older individuals who are unusually sensitive to drowsiness or loss of balance.

However, the National Kidney Foundation does caution that ginger could interfere with your prescription medication.  While not specially aimed at the CKD population, this is the first I noticed any mention of “motion sickness drugs” and “loss of balance” in the same sentence. Odd that a medication aimed at relieving such symptoms can actually be a cause of one.

I have no intention of becoming seasick on our two cruises (the second in the Caribbean in September to celebrate said sister-in-law’s birthday and the 48th anniversary she will be sharing with my brother, Paul), but you know I’ll be bringing the acupressure chart and one of the seasickness bands with me… should my nephrologist concur.

Book Cover

I have a favor to ask: if you have read either of The Book of Blogs: Moderate Stage Chronic Kidney Disease, please write a review onDigital Cover Part 1 Amazon.com.  This is what one reader had to say in his review,

If you have kidney disease, like I do, you can relate to what Gail Rae-Garwood has written here… very useful…

Until next week,Part 2

Keep living your life!

Never Heard of It

Before I write about what I never heard of, let me tell you what I have heard of: The National Kidney Foundation of Arizona Kidney Walk this Kidney Arizonacoming Sunday. Our t-shirts are ready, the banner is on the way, and all we need is you!  Pre-register for Team SlowItDownCKD at kidneywalk.kintera.org or just show up at Chase Stadium to register at 8:00 a.m.  Religious?  No problem; services will be held at the walk if you’d like to attend them.

So what have I never heard of?  The NutrEval (FMV Amino Acids) with Nutrient & Toxic Elements. This is a test my pre-diabetes counselor ordered for me. It consists of a blood drawer and a first void urine sample.

That in itself is interesting.  If you remember, when you have a 24 hour urine test for Chronic Kidney Disease, the first void is not used since this urine has been accumulating in your bladder the whole time you’ve been sleeping.  Apparently, this same accumulated urine is important for this urine containertesting.

You and I are exploring this together today. I hadn’t seen the blood drawer orders yet when I was walked into the lab directly from the counselor’s office.  Luckily, Jody Navarro, the tech on duty that day at this Sonora Quest Lab., pointed out that lipids were being tested  – which meant fasting.  I’d already eaten breakfast and lunch.

With a little mental rearranging, I saw I could just come back the next day.  Then Jody emphasized that I needed to bring the first urine void with me. Surprising, I thought.

The next day, back to the lab I went – although I knew the specimens would be sent out to Genova Diagnostics for the actual testing – with my refrigerated urine sample.  I tend to get up early and knew I wasn’t going to eat within half an hour of waking since this was a fasting test, so I wasn’t hurrying anywhere. Hence, the refrigeration.

Both Jody and Abigail Grimwade, who made the actual blood draw practically painlessly, greeted me and gave me copies of everything I asked for, which was everything.  I’m serious about understanding my health.

Okay, let’s backtrack a bit here. According to Genova Diagnostics’ website at https://www.gdx.net/product/nutreval-fm-nutritional-test-blood-urine, this is what the tests cover:

Metabolic Analysis assessment provides information on 45 key organic acids. These biomarkers are grouped into easy-to-understand categories, and provide insight for functional support in the areas of: malabsorption & dysbiosis; cellular energy & mitochondrial metabolism; neurotransmitter metabolism; vitamin deficiencies; and toxin exposure & detoxification need.protein

Amino Acids analysis features either plasma (37 total) or urine (41 total) amino acids. This assesses nutritionally essential and non-essential amino acids, as well as intermediary metabolites that augment an understanding of B vitamin need, and need for support of protein digestion & absorption.

Essential and Metabolic Fatty Acids Analysis provides a high level overview of the balance of various families of fatty acids in relation to each other: Omega 3, 6 and 9 Fatty Acids; Saturated Fatty Acids; and Monounsaturated Omega 7 and Trans Fats. It also provides key ratios for understanding cardiovascular risk, including the Omega 3 Index.

Elemental Profiles provide information in two categories: Nutrient Elements which evaluates intracellular nutrient status, and Toxic Elements which evaluate short-term toxic element exposure.

Oxidative Stress biomarkers highlight the body’s current state of oxidative stress and reserve capacity. Markers of oxidative injury assess cell membrane (lipid peroxides) and DNA (8-hydroxydeguanosine/8-OHdG) damage, while direct measurement of glutathione and CoQ10 provide insight into antioxidant reserve available to counter free-radical impact. Additional markers are available in our Oxidative Stress 2.0 profile.

Why did we need to know all this? Well, it seems that chronic disease – as in Chronic Kidney Disease – can be caused by nutritional deficiencies… and these tests could find them.  I know my pre-diabetes counselor’s eyes were lit up like the statue of Liberty at night when NYCshe realized she could order this testing for me.

Some of my readers have mentioned that this is state of the art testing that isn’t readily available and that they didn’t know Medicare would pay for this.  Looks like I lucked into this by simply choosing the counselor I did.

I would urge anyone with pre-diabetes to get this kind of nutritional counseling if your insurance covers it.  I have a far better understanding of how my blood glucose works now and what I can do to control it… and then there’s this testing to see what can be done about my chronic health problems.

What I found especially interesting is that the Creatinine, Urine (a CKD marker and stager) is present in this testing. I also noticed Potassium on the list of what’s tested for both deficiencies and toxicities. I am eager to receive my results and have them explained in detail, but that could take up to 14 days total, which means I need to wait for possibly 10 days.

Every time I research the test, I’m directed to Genova Diagnostics or a lab that sends the specimens to them.  While this test formerly cost thousands, the price seems to have come to the high hundreds in recent times. In attempting to plot the history of the test, I drew blank after blank.  This is considered pioneer bio testing.Genova

Maybe the best thing to do here is wait for my results and then explain them to you, so you may see if they have any relevance to your own health.

I was curious about first void urine being tested and speculated that it might be more concentrated. Medical Technology Avenue at http://medicaltechnologyavenue.blogspot.com/2008/12/first-morning-specimen.html confirmed my speculations.

The first morning urine is the ideal screening specimen because it is more concentrated than the random specimen.Part 2Book CoverDigital Cover Part 1

You’ll definitely see another blog about this once I review my test results.  Meanwhile, read my books!  Buy them on Amazon, borrow them, ask your library to order them if you don’t know anyone who has them (What!) and don’t have the money to buy them, but read them… and then write reviews.  The idea is to spread this info.  We all know I’m not going to get rich here, but I would like to see the information out there.

Until next week,

Keep living your life!

Is It Really So Bad?

Lately I’ve been experiencing what is commonly referred as interrupted sleep pattern.  According to Wikipedia – which is open to the general public for editing – this is the definition:

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

I know, I know.  You’re thinking “Well, of course you are with all the excitement that goes along with the publication of The Book of Blogs: Moderate Stage Chronic Kidney Dsleepisease this past week and all the celebrations that go along with the holidays.”  You’re right, it is exciting, but that’s not the cause of my interrupted sleep.

No, it’s not worry about my sweet dog’s cancer problems, either.  She has had three operations and is recovering so well that she doesn’t realize she still has an open wound at one of the surgery sites.

Well, yes, it is true I have sleep apnea. According to WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/sleep-apnea:

Sleep apnea is a serious sleep disorder that occurs when a person’s breathing is interrupted during sleep. People with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times. This means the brain — and the rest of the body — may not get enough oxygen.  . 

But I also have a Mandibular Advancement Device that treats the problem.  This is how the device works as explained at http://www.mandibularadvancementsplint.com/mad

Mandibular advancement is a simple technique for opening the airway, keeping the palate taught and helping your breath to flow during sleep – thereby preventing snoring and relieving mild to moderate OSA. Mandibular advancers work, as the term implies, by advancing the lower mandible forward. This is often done using a malleable mouthpiece that is worn between your upper and lower teeth when sleeping.

While I am not specifically endorsing their product, their explanation is clear.

Restless leg syndrome?  No, I don’t have that.  But here’s what MedicineNet at http://www.medicinenet.com/restless_leg_syndrome/article.htm has to say about it anyway:

Restless leg syndrome (RLS, restless legs syndrome) is a common cause of painful legs. The leg pain of restless leg syndrome typically eases with motion of the legs and becomes more noticeable at rest. Restless leg syndrome also features worsening of symptoms and leg pain during the early evening or later at night.CoffeeCupPopCatalinStock

Hmmm, I’m pretty careful about sleep hygiene.  Let’s go to http://sleepfoundation.org/ask-the-expert/sleep-hygiene for an explanation of just what that is.

  • The most important sleep hygiene measure is to maintain a regular wake and sleep pattern seven days a week.
  • Avoid napping during the day. It can disturb the normal pattern of sleep and wakefulness.
  • Avoid stimulants such as caffeine, nicotine, and alcohol too close to bedtime. 
  • Exercise can promote good sleep. 
  • Food can be disruptive right before sleep.  
  • Ensure adequate exposure to natural light
  • Establish a regular relaxing bedtime routine.  Associate your bed with sleep. 
  • Make sure that the sleep environment is pleasant and relaxing

So what is the problem?  Surprise, well it was a surprise to me.  Chronic Kidney Disease, even “milder degrees of kidney disease” could be the cause.

bluesThis was the headline for a June, 2013, MedScape article about a (then) recent study:

Sleep Problems Common in Chronic Kidney Disease

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

You can read the entire article at http://www.medscape.com/viewarticle/805342

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep.  I took a comment from one study, a sentence from another, and unilaterally decided this was the reason.  I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion.  It’s a good thing I’ll be seeing my nephrologist next month because I have loads of questions about whether there is any scientific proof behind my thinking and, if so, what that is.

Oddly enough, while I’m concerned about segmented sleeping, there seems to be a movement espousing it as the healthiest way to sleep. This quote from National Post at http://life.nationalpost.com/2012/07/16/rest-assured-theres-nothing-wrong-with-segmented-sleep/     hit the nail on the head for me:

So my curiosity was piqued when a recent BBC online story, “The myth of the eight-hour sleep,” shone a light on a growing body of research suggesting that “segmented sleep” is perfectly normal. It appears that in centuries past, and in pre-industrial societies, bedtime has meant falling asleep once, then waking for awhile, and then going back to bed for a “second sleep.”     

So now I can drive myself nuts wondering whether this segmented sleep is a good thing for a CKD patient or simply wait to speak to Dr. Atalla since my usual researching is not helping here.  I vote to lay the issue aside until I speak with him.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsOh, but I do want to speak with you.  To celebrate the publication of my second CKD book, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Amazon.com has been kind enough to allow me to offer the digital copy for 99 cents tomorrow and Wednesday.  Get it?  Two books, two days. Unfortunately, there wasn’t any way to work out offering What Is It and How Did I Get It? Early Stage Chronic Kidney new blog shotDisease for 99 cents for the same two days.  Wouldn’t that have been perfect!

Amazon has been terrific about offering free samples of the book, arranging for the Look Inside feature, and including the book in both Kindle Unlimited and Kindle Owners’ Lending Library. If you belong to those programs, you can borrow the book for free.

Until next week,

Keep living your life!

Renal Arterial Stenosis, Huh?

I recently attended a social function at which someone I respect tapped me on the shoulder and said, “Make sure you speak with our mutual friend before you leave.”  So I did … and was mystified when she conducted some small talk with me.  This is what he wanted me to hear?

Later I received a message from our mutual friend and all became clear.  She’d been diagnosed with renal arterial stenosis and her doctor wanted her to have surgery.  Could I help?  At that point, I couldn’t, but I could research for her and I did.

Then I got to thinking about how many of us with Chronic Kidney Disease don’t know what this is or what it might have to do with us, other than it starts with renal – which is from the Latin for kidneys. The Greek root is ‘neph’ as in nephrology.

I turned to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {Page 129} for the definition of arteries.

Vessels that carry blood from the heart.

Blood Oxygen Cycle Picture 400dpi jpgSo, we’re looking at vessels attached to the kidneys that bring in blood from the heart.  And why do we need that I wondered?  Oh wait.  I remember: the kidneys filter this blood and then send it back to your heart via the veins.

That’s where stenosis comes in.  According to the medical dictionary at http://medical-dictionary.thefreedictionary.com/stenosis, this is

a constriction or narrowing of a duct or passage; a stricture.

That same dictionary gave us a precise definition of renal artery stenosis.

narrowing of one or both renal arteries, so that renal function is impaired,

resulting in renal hypertension and, if stenosis is bilateral, chronic renal failure

So what we’re looking at here is a narrowing of the artery that brings blood from the heart to the kidneys for cleaning by the nephrons.

Now hold on there.  Let’s not panic, folks.  This does not mean automatic chronic renal failure and dialysis or transplant.

Let’s take a look at what might cause renal artery stenosis or RAS. I went directly to a trusted site, U.S. Department Of Health And Human Services, National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at http://kidney.niddk.nih.gov/kudiseases/pubs/RenalArteryStenosis/#cause.

About 90 percent of RAS is caused by atherosclerosis—clogging, narrowing, and hardening of the renal arteries. In these cases, RAS develops when plaque—a sticky substance made up of fat, cholesterol, calcium, and other material found in the blood—builds up on the inner wall of one or both renal arteries. Plaque buildup is what makes the artery wall hard and narrow.

Most other cases of RAS are caused by fibromuscular dysplasia (FMD)—the abnormal development or growth of cells on the renal artery walls—which can cause blood vessels to narrow. Rarely, RAS is caused by other conditions.

Our mutual friend had been making herself out to be a terrible person to herself, one who caused her own RAS.  Well, maybe she did… and maybe she didn’t. It could have been FMD or some other unknown condition.  If it wasn’t, I still can’t see her blaming herself if she didn’t know about preventing atherosclerosis.  The point is she does now and needs to deal with the RAS.

MedicineNet at http://www.medicinenet.com/renal_artery_stenosis/page2.htm#what_are_the_symptoms_of_renal_artery_stenosis tells us that symptoms aren’t that common.

In general, renal artery stenosis is not associated with any obvious or specific symptoms. Suspicious signs for renal artery stenosis include:

  • high blood pressure that responds poorly to treatment;
  • severe high blood pressure that develops prior to age 30 or greater than age 50;
  • an incidental finding (discovered through routine tests or tests performed for another condition) of one small kidney compared to a normal sized one on the other side.

Typically, unilateral (one-sided) renal artery stenosis may be related to high blood pressure whereas bilateral (two-sided) renal artery stenosis is more often related to diminished kidney function.

What about that surgery our mutual friend’s doctor wanted her to have? Is it really necessary?ras

Sometimes a regiment of several hypertension {High blood pressure} drugs, along with hyperlipidemia {High cholesterol} drugs, and perhaps aspirin can alleviate the problem. Then there’s angioplasty – a procedure in which a catheter is placed in the artery via a blood vessel, a balloon is then opened in the artery and stented to keep the renal artery open. Or, bypass surgery may be performed to avoid the blocked area of the renal artery.  Thank you to WebMD for this information which I paraphrased from http://www.webmd.com/hypertension-high-blood-pressure/guide/renal-artery-stenosis-symptoms-treatments?page=2.

My advice when surgery is suggested?  A second opinion.  Any doctor worth his salt will welcome this request and understand that it in no way casts aspersion on his/her value as a doctor. A second opinion from a nephrologist would be the way that I would go and I urged our mutual to seek one.

Here’s to our mutual friend and all of us who ever wondered what RAS is and what it has to do with CKD.

On another note entirely, here’s a bit of happiness I wanted to share with you.  These are reviews for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease I hadn’t seen on Amazon.com… and all five stars!

One of the best on the subject not so much for the info but the way it was presented. Almost like a novel. Makes you forget your kidney is not behaving the way it should.

It is written for a patient like us, mean that the language it is simple and easy to understand, good sense of humor and a positive aptitude with this silent killer, another book that deserve a place on your personal library. Very informative , excellent book.

A book that is very helpful to CKD3 patients. It gives the facts and figures needed most to those with this condition!new blog shot

I’ve had this book in paperback for a while and when Amazon offered me the option to buy the digital version at a discounted price since I had purchased the paperback from them, I jumped at it. I’m a sucker for loaning out hard copy and this way if I find a fellow kidney disease sufferer, I can let them have my paperback and I will always have my digital backup for reference. This is a great book by a fellow kidney disease patient who also publishes a very good blog. There are so many details to track with this disease and she talks about the daily life of it. Very helpful and answers so many questions. She’s a born researcher, so all her information has backup links to let you know this is authentic medical advice to get some of those questions answered between doctor’s visits.

Until next week,

Keep living your life!

Flanked by the Pain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

54603_4833997811387_1521243709_oWant to hear about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? Of course, you do (she decided unilaterally). I was delighted to have new blog readers inform me that they’ve ordered multiple copies of the book for friends and family since these same new readers are also newly diagnosed CKD patients.  Hurray!  Some people are taking my advice.

Until next week,

Keep living your life.

Laboring on Labor Day

labor dayToday is Labor Day.  We celebrate it every year.  But what is it? This holiday, first celebrated in New York City in 1885 (my favorite year) or even 1882, was founded to celebrate workers and their contributions to society. In other words, we’re celebrating – just as the name suggests – labor.

We, as Chronic Kidney Disease patients, also labor… every day of the year, every year of our lives.  We cannot contribute to society unless we labor to save ourselves.  Just keep that in the back of your mind as you bar-b-que, watch a parade, or go to a picnic today. Maybe it’ll help you stick to your renal diet, if nothing else.

Our community, our families, and our doctors labor for us, too.  So do researchers.  You may remember Dr. N. Hild’s comment back in July about the New England Journal of Medicine.  One of the review articles in the journal concerned Acute Kidney Injury (AKI) and Chronic Kidney Disease (CKD).

On the very first page of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote, “…chronic is not acute.  It means long term, whereas acute usually means quick onset and short duration.”  All those years of teaching English in high school and college paid off for me right there in that sentence.Book Cover

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too.  But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others: “— chronic kidney disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of chronic kidney disease, and both acute kidney injury and chronic kidney disease are risk factors for cardiovascular disease.”  You can read the article for yourself at: http://blogs.nejm.org/now/index.php/acute-kidney-injury-and-chronic-kidney-disease/2014/07/04/

New England Journal of MedicineI keep wondering why this article was published on Independence Day, but maybe I’m trying to make too much of that. You know, independence from ignorance about new findings concerning our disease, that sort of thing.

Not surprisingly, the risk factors for AKI are the same as those for CKD… except for one peculiar circumstance.  Having CKD itself can raise the risk of AKI 10 times. Whoa!  If you’re Black, of an advanced age (Hey!), or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it.  Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times.  I’m getting a little nervous here.

Someone I grew up with just had AKI which temporarily shut his kidneys down.  This was a month ago.  While his kidneys are fully functioning now, because he had this episode, he’s at risk for CKD and Cardiovascular Disease (CVD, as long as we’re making a little no sodium alphabet soup here).

It makes sense, as researchers and doctors are beginning to see, that these are all connected.  I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk?  Let’s think of it this way.  You’ve had AKI.  That period of weakness in the kidneys opens them up to CKD (Forgive, the super simplistic and totally devoid of other factors explanation here).  We already know there’s a connection between CKD and CVD.  Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before.AKI

Let’s not go off the deep end here.  If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic (kidney poisoning) medications such as NSAIDS – just wrote about those in last week’s blog – , contrast dyes, and radioactive substances.

This is just so circular!  It was nephrotoxic medication that caused AKI in the first place for the person I know.

As with CKD, your hypertension and diabetes (if you have them) need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.

Has your primary care doctor (PCP) recommended a daily low dose aspirin with your nephrologist’s approval?  This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.  You can find an article about this at: http://articles.mercola.com/sites/articles/archive/2014/08/04/daily-aspirin-side-effects.aspx.depression-cause-heart-attack-1

Keep in mind that I am not endorsing Dr. Mercola or his products. I’m not familiar enough with either to endorse or warn against them.  This was simply the most reader friendly article about the subject I could find.  Another reminder that sometimes you need to just sit down and have a heart to heart, or more realistically leave a message with your concerns, with your PCP and talk it out.

On a personal note, congratulations to my baby who turned 30 this week, my husband who turned 68 this week, and one of my almost sons-in-law who turned 40 something this week.  This is the most trying week of the year for me as far as the renal diet and one of the happiest since I am able to celebrate with all these people I love.

This week, I’ve learned that cake from a mix doesn’t always turn out as you’d thought it would, there’s never enough frosting for the whole cake in one can, and I’m not missing anything by not eating these.happy birthday

This week, I’ve learned that we can bar-b-q food prepared so that I can eat it, I don’t have to eat red meat, and corn on the cob is delicious without any sugar in the water you boil to cook it.

This week, I’ve also reaffirmed for myself that it’s not the food, but the company, that makes a party… and a family… and me happy.

Until next week,

Keep living your life!

It’s the Long Promised Sulfa Blog!

Since I mentioned sulfa drugs in a blog a few weeks ago, I’ve been asked some questions, including one wanting to know if these drugs could have caused a particular reader’s CKD.  Although I used the British spelling, I also wrote about my experience with sulfa drugs in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (page 90):

I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a Book Coverweek and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

All right, let’s go back to basics, first.  The Medical Dictionary at http://medicaldictionary.thefreedictionary.com/sulfa+drug defines sulfur drug as

“Any sulfur-based antibiotic, in particular sulfonamides.”

sulfaGreat. Now we just need to know what sulfonamides are.  The same dictionary tells us these are

“medicines that prevent the growth of bacteria in the body”

and that they are frequently used with urinary tract infections. Yet, there’s also a warning that people with kidney disease should be sure to warn their doctors about their kidney disease should one of these drugs be prescribed.

Well, why do you need to avoid such medications with CKD? As you already know, compromised kidneys don’t do the job they were meant to do as well as they did before we had CKD when it comes to eliminating drugs from our bodies.  The kidneys are the organs that clear this particular drug from the body, not the liver (which is another organ that can clear drugs from your body). That means the drug may build up… and cause problems.

Here’s one of those problems from MedicineNet.com at http://www.medicinenet.com/sulfonamides-oral/article.htm#what_are_the_side_effects_of_sulfonamides,

“Other rare side effects include liver damage, low white blood cell count (leucopenia), low platelet count (thrombocytopenia), and anemia. Formation of urinary crystals which may damage the kidney and may cause blood in the urine. Adequate hydration is needed to prevent the formation of urinary crystals.”

We are already prone to anemia since we’re not producing as many red blood cells as we could (another job our kidneys have). Sure, adequate hydration may prevent these crystals, but just how much is adequate.  After all, as CKD patients, we do have fluid restrictions.

As for actually causing kidney damage, yes, sulfa drugs can do that. As The National Kidney Foundation phrases it at http://www.kidney.org/atoz/content/kidneysnottowork.cfm:NKF-logo_Hori_OB

“Other things that can damage the kidneys include kidney stones, urinary tract infections, and medications or drugs.”

 An allergic reaction to sulfa drugs can also cause kidney damage.  Allergies.About.Com at http://allergies.about.com/od/medicationallergies/a/sulfa.htm reports:

“People with sulfa allergy may also develop a type of hepatitis, and kidney failure, as a result of sulfa medications.”

However, they are careful to point out that this is an uncommon reaction, occurring in less than 3% of users.

The antibiotics Bactrim and Septra are two of the most common sulfa drugs prescribed today.  Most often, they’ll be prescribed for a urinary tract or bladder infection.  What makes it harder to pinpoint which drugs are sulfa drugs is that they don’t always have ‘sul’ in their name.

That’s also what makes it so important for you to impress upon your physician that you

the medical alert plate1. do have CKD and

2. will not be taking any sulfa drugs

Wearing a medical alert bracelet might help you remember to be downright insistent that you will NOT be taking any sulfa drugs.

The emergency room doctor did try to speak with my nephrologist before prescribing the drug for me, but couldn’t get through… a situation we’re all familiar with.  He was not a specialist and made a judgment call that sulfa drugs would be all right for me.

Yet, when I finally got a response to my own calls to the nephrologist, he was horrified.  This guy was not an emotional man so this really put me into a panic, especially since CKD was so new to me and I didn’t really know the rules yet.

Some blogs just flow and some are hard to write.  This was one of the hard ones.  I spent more time trying to tease information from the internet and my source books than writing.  I gather this is neither a popular topic nor one that is usually visited.  That makes me even more hopeful that I’ve answered your questions about CKD and sulfa drugs.NYC

I left NY in 2002, but we’re going back for a visit soon.  Nima, my NY daughter, will be taking me to High Line and The Urban Museum.  Are there any other new places you think we should visit?  While I lived there, the city was our playground… but it’s been a dozen years.

Until next week,

Keep living your life!

And Now for Something a Little Different

Have you ever taken one of those silly little Facebook quizzes?  I usually don’t, but I did yesterday… and discovered that my mental age is 28.  Well, that explains a lot. The truth of the matter is that I will be 67 on Sunday.

As a younger woman, I lost my birthday to the beginning of the new term in whatever high school I was teaching: five new classes for my birthday. Now I lose it to Super Bowl Sunday.  Although this year, I find I’m losing it to something else too, and I don’t mind that at all.

wsjAfter last week’s Wall Street Journal article (Oh, you haven’t read it yet?  It’s included in last week’s blog), I received a bunch of requests to include information in the blog.  Some were for profit.  Those I immediately discarded.

Some were for public relationships coverage.  I replied I would consider a trade if they would publicize SlowItDown, my project to bring free CKD education by trained educators to any community that needs it. Never heard from them again.

And then there was this one from Cameron Von St. James about LungLeavin’ Day. I thought and thought about it since the .com threw me, but finally decided that there was a reason LungLeavin’ Day is the same day as my birthday and I just happen to write a medically associated blog.  Thank you, Cameron, for sharing this:

http://www.mesothelioma.com/heather/lungleavindaylung

Unfortunately, it was beyond my computer capabilities to reproduce or even copy the contents of the site to the blog.  Do click on it.  It is worth your while.

Of course, you’re probably wondering what this has to do with Chronic Kidney Disease.  Let me explain.

Just as with CKD, early detection of mesothelioma certainly helps in treating it.  Screening the at risk population- those who have been exposed to asbestos – is an important part of detecting the disease, just as with CKD. However, there are reasons to be extra careful about diagnosing mesothelioma in kidney patients.Book Cover

According to PubMed, part of the US National Library of Medicine of The National Institutes of Health,

“Serum mesothelin concentration is elevated in individuals with renal impairment. Renal function should therefore be taken into account during interpretation of this assay.”

You can read more about the September, 2011 study which resulted in this conclusion at: http://www.ncbi.nlm.nih.gov/pubmed/21333373

I wasn’t clear about serum mesothelin so I researched it. MedicineNet.com tells us that mesothelin is “A protein attached to the cell surface that is thought to have a role in cell-adhesion and possibly in cell-to-cell recognition and signalling. Mesothelin is so named because it is made by mesothelial cells. A monoclonal antibody, which recognises mesothelin, binds to the surface of cells from mesotheliomas and some other tumors but not to healthy tissues except for mesothelium.” You can find more, but it is definitely written in medicalese, at: http://www.medterms.com/script/main/art.asp?articlekey=25335.

So serum mesothelin is measured during a blood test.  This tells your physician if you have mesothelioma and, if you do, how far it has progressed.  BUT, if you have kidney disease, your readings for serum mesothelin may be elevated.  What a Catch 22!

A little more on this.  Serum means “The clear yellowish fluid obtained upon separating whole blood into its solid and liquid components after it has been allowed to clot.”  This definition is from The Free Dictionary, which you can find at: http://www.thefreedictionary.com/serum.

mesoYou probably didn’t need that defined, but I wanted you to see where in the blood you would find this indicator of mesothelioma.  Notice that your creatinine measurement is also taken from the serum.

Years ago, seemingly in another lifetime – when I worked in McKee Vocational – Technical High School in Staten Island – one of my colleagues died of kidney failure.  Rumor had it that the asbestos in the building was the cause.  I hadn’t been diagnosed yet and didn’t really understand any of this.  Now I can understand the possible origin of the rumor, but the result is the same:  we lost a wonderful person, Ms. Alice Schmedes.

Let’s get a bit more on the positive side here.  Here’s a blog by Dr. Robert Provenzano from Accountable Kidney Care Collaborative that resulted from the Wall Street Journal Article.

Educating Patients Means Empowering Patients

The Wall Street Journal recently published an article about patients doing more to control chronic conditions. After finishing the article, my immediate thought was I’d like to see more patients like author Gail Rae-Garwood, who is profiled in the article, feel empowered to take charge of their health. Undoubtedly, patients need to muster a great deal of courage to step up and take the lead in managing their chronic kidney disease. And education is the best way for physicians to facilitate that kind of courage.

Educated patients make better clinical choices and are better prepared when treatment is necessary. This is a well-known fact, yet many patients need reinforcement to better understand how to live a longer, healthier, happier life—and that reinforcement can come from you, one of their most trusted resources.

DaVita’s Kidney Smart® program is a great resource for your patients. Through instructor-led classes, Kidney Smart gives people with chronic kidney disease (CKD) who have not yet started dialysis the information they need to make healthy choices and slow the progression of their disease—all at no cost to them. Encourage your patients to enroll in a no-cost Kidney Smart class today.

You can also refer your patients to communities like myDaVita.com. This 133,000-member online community helps CKD patients understand and manage their kidney disease, featuring more than 1,000 kidney-friendly recipes, forum discussions, group support and more.Provenazo

Together, we can be a valuable front-line resource for people living with CKD.

Take a moment to read more of the Wall Street Journal article on patients’ role in managing chronic conditions, and figure out the best way you can support your patients.

An open message to Dr. Provenzano, the Accountable Kidney Care Collaborative, my readers, any member of the medical field, and those who know and love people with CKD:

I invite you to contact me at ckded@cox.net to bring SlowItDown to any and all communities that need it.Kidney Book Cover

Until next week (when I’ll be 67!),

Keep living your life!

Down in the Mouth

With all that’s going on here, I managed to add insult to injury… all by myself.  While trying to open the new jar of honey so I could sweeten Bear’s tea, I broke my tooth.  Don’t ask how; it’s too embarrassing to explain.  At any rate, I was sleep deprived, still recovering from that terrible bronchitis and all I could think was, “Why didn’t that hurt?  I’m standing here with a piece my tooth in my hand and it doesn’t hurt.”

It took a few minutes for me to focus. That’s when I realized it was a not my real tooth; it was the plastic replacement for one of my two front teeth.  I don’t know if you can describe breaking your tooth as lucky, but this one was for me – no pain.  I contemplated not having it fixed since it didn’t look that bad. Ah, but I could hear the lisp when I spoke.  I’d spent quite a bit of time in speech therapy when I was a youngster to lose the lisp and I didn’t want it back again.

Hmmmm, I’ve been trying to figure out how to whiten my teeth.  I was fine with my tooth color until whitening became possible.  People looked wonderful and really healthy with white teeth.  I wanted white teeth, too, until I heard how much that would cost me.  For vanity?  No way, but now that it’s a necessity….dentist

I asked my dentist, Dr. William C. Kaus of Bellaire Smiles here in Glendale, Arizona, if I could get a lighter replacement bridge. I figured that since the bridge covered six of my top front teeth, the ones you see when someone smiles, it might be worth a shot.  He agreed, so we’ll go for the brightest available for the temporary bridge and see if the permanent bridge needs to be a darker hue.  I find myself excited about this.

Here’s what it has to do with Chronic Kidney Disease.  I always urge you to speak to your doctor, every kind of doctor you have.  That includes your dentist.  I told him about my fear of pain in my mouth, the fear I’ve had since I opened a car door into my mouth at age 19.

That’s what caused the need for the root canals in my two front teeth and the need to file them down, way down.  I’d forgotten how very long they had been.  I was warned the teeth might darken and flake in 20 years or so, but 20 years is a long time to a 19 year old.

They lasted longer than 20 years, but did eventually fall apart.  That’s when they were extracted and the bridge with the two new front teeth and anchors for two teeth on either side was inserted.  That’s probably a quarter of your mouth.  Let’s see you have 32 teeth and I had four wisdom teeth extracted which means 28 minus the one that… well, you get the point.

I asked for nitrous oxide, even though replacing a bridge is not a painful procedure. According to Medscape at: http://emedicine.medscape.com/article/1413427-overview, nitrous oxide – commonly called laughing gas or sleeping gas – goes nowhere near the kidneys.  I remember researching when I first was diagnosed with CKD and calling my nephrologist to make certain it’s safe.  (Confession: I am a dental coward since that car accident.)  It is inhaled, goes into the lungs, and then is exhaled via respiration (breathing).  It doesn’t go anywhere near the kidneys.laughing gas

Dr. Kaus recognized that my fear was very real for me, assured me that nitrous oxide – which is combined with oxygen before you inhale it, by the way – would not be a problem and very gently asked me if I’d like something a bit stronger, say, valium.

Everyone’s heard of valium, but I didn’t know much about it and preferred not to take it.  When I was in the throes of bronchitis (was that only last week?), the ER doctor wanted me to take cough syrup with codeine in it, but I’m really, really sensitive to drugs and knew that was going to knock me out.  I didn’t see the point and politely declined that, too.  I’m not good with drugs.

So, valium.  Can and do CKD patients use this drug?    I found this warning at http://www.pdrhealth.com/drugs/valium  (Physicians’ Desk Reference):

“Use Valium with caution if you have any type of kidney or liver problems.”

There was nothing about WHY you need to be cautious in your use of valium.  I spent an hour or so more researching, but all I can find were admonition after admonition to tell your doctor if you have kidney disease and repeated mention that the dosage of the drug valiumhas to be accommodated to your degree of kidney function.  But that’s true of any drug you take.  The lack of specific information for non-medical people about valium only re-enforced my decision not to take the drug.

I am thrilled to remind you that, just in time for Chanukah, Amazon.com has included What Is It And How Did I Get It? Early Stage Chronic Kidney Disease in their Kindle MatchBook  program. That allows you to buy the Kindle edition of the book for $2.99 instead Book Coverof its regular price of $9.95 if you have EVER bought the print copy of the book from Amazon.  Happy Chanukah.

I am actively looking for ways to make the book an affordable gift for Kwanza and Christmas, but think this program is going to be it.  I like how much more accessible it makes the book to those who may need it but weren’t in a position to pay the regular price.

I spent the weekend at a Landmark class where I usually meet the most interesting people.  This weekend was no exception. I discovered that one of my classmates has a nonprofit to offer help to chronic disease sufferers and another is a Doctor of Oriental Medicine.  Both now have copies of the book to share with their patients back in Denver.

Until next week,

Keep living your life!

Bronchitis and Bone Fusions on Veterans’ Day

July 4thIt’s Veterans’ Day.  I’ve been perusing Facebook all day and seeing all the Happy Veterans’ Day posts.  I seem to be having trouble with the happy part.  Why just on Veterans’ Day?  I couldn’t quite figure this one out.

Then I saw how veterans could be happy every day.  Our lovely friend and neighbor Amy (she who brings the milk and cookies when a feverish Bear wants them and a recuperating Gail can’t go to the store) Vlasity wished Bear a Happy Veterans’ Day.  This was his response:GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

“I always get a warm glow in my heart when family, friends, and total strangers acknowledge my 25+ years of combined reserve and active duty military service. Knowing that my service assured Olivia’s, Willie’s, Adam’s, and their generation’s opportunities for schooling, choice of worship, and pursuit of happiness gives me great satisfaction of my career’s journey from stateside, Panama, Vietnam, Korea, Europe, and elsewhere. The next generations carry on our American Traditions and I proudly salute these young people for their commitment, time, and hard work!”

Any questions about why I married the man?

The bone fusion part of the title is Bear’s.  The stitches from the three of those and the tendon repair come out tomorrow.  Meanwhile, he is still in a non-weight bearing cast from toes to knee that permits him very little mobility.  He has a wonderful little knee scooter, but is hampered using that due to the leg bone injuries he sustained in a fall we suspect was caused by the eroded joints in his foot about six weeks ago.  He even tried a wheelchair, but cannot elevate his leg high enough in one of those.Bear's foot

The result?  An already over-extended Gail with her Chronic Kidney Disease impaired immune system developed bronchitis… again.  I noticed I’ve not blogged about this.  It’s time.  By the way, I’ve also irrationally wondered if I keep getting sick so I’ll have something to blog about.  That’s ridiculous.  (Isn’t it?)

I went directly to the Mayo Clinic at http://www.mayoclinic.com/health/bronchitis/DS00031 for a definition of bronchitis.

“Bronchitis is an inflammation of the lining of your bronchial tubes, which carry air to and from your lungs. Bronchitis may be either acute or chronic.

Often developing from a cold or other respiratory infection, acute bronchitis is very common. Chronic bronchitis, a more serious condition, is a constant irritation or inflammation of the lining of the bronchial tubes, often due to smoking.

Acute bronchitis usually improves within a few days without lasting effects, although you may continue to cough for weeks. However, if you have repeated bouts of bronchitis, you may have chronic bronchitis, which requires medical attention. Chronic bronchitis is one of the conditions included in chronic obstructive pulmonary disease (COPD).

Treatment for bronchitis focuses on relieving your symptoms and easing your breathing. “

That scared me.  I did have bronchitis about six months ago, too, and both this time and last it hit hard.  Yet I know that chronic is considered constant for at least three months and means “long lasting, the opposite of acute.”  Maybe this is just a case of two unrelated bouts of acute bronchitis.  I did have a head cold just before the bronchitis. In lieu of an image, I’m including a link to MedicineNet.com’s slide show on bronchitis: http://www.medicinenet.com/bronchitis_pictures_slideshow/article.htm. I found it more informative than a single picture could be.

Alright then, if this is acute, or “extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic,” why am I still having trouble breathing after three days?  By the way, both of these definitions are from the glossary in What Is It and How Did I Get It? Chronic Kidney Disease. I’m glad I have a follow up appointment with my family doctor on Wednesday, although I would have preferred one today.

WebMD at http://www.webmd.com/lung/understanding-bronchitis-symptoms tells us:

The symptoms of acute bronchitis may include:

  • Hacking cough that persists for 5 days or more
  • Clear, yellow, white, or green phlegmflu
  • Absence of fever, although a low grade fever may occasionally be present
  • Soreness in the chest

Okay, the disgusting green phlegm thing was there and the sore chest, but basically, I was having so much trouble breathing that I couldn’t speak.  This was not the scary asthmatic kind of couldn’t catch my breath, but rather a having to work very hard to breathe.

So what brought me to the emergency room? My PCP (Primary Care Physician) is not in on the weekends and the Urgent Care Centers out here in Arizona made it clear they couldn’t treat me because, as a CKD patient, I would need blood tests before any work could be done one me.

Although, they ignored the blood tests at the emergency room long enough to give me a breathing treatment for which I am eternally grateful.  I was still feeling miserable after it, but I could breathe a bit more easily. Ms.-I-Don’t-Want-Medication did not even fight the need to use a nebulizer while I recovered.  Let’s just say I saw the value of breathing.

I’m also on an antibiotic since the cause (in my case) was deemed most likely bacterial and I do have CKD.  Although the attending doctor said something odd, “Your creatinine is 1.2.  We don’t even consider that CKD.”  Why not?  It’s stage three.

I’ve heard this before.  Apparently it goes back to that controversy about not diagnosing patients until they’re end stage so they aren’t living a label. Just in case you’re interested, I think that’s nonsense.  If I’d been diagnosed earlier, maybe I could have maintained at stage 1 or 2, as I am at stage 3.

Whoops!  Almost forgot.  I also had a lung x-ray to rule out pneumonia… which it did.

Book CoverMore news about this Kindle Match book deal: if you EVER bought a print copy of the book from Amazon.com, you are eligible to order the digital copy for $2.99.  Many, many thanks to Amazon for their zest in finding new ways to make sure the information about Chronic Kidney Disease you need or want to share with others is more and more available to  you.

While I’m thanking, I don’t know where to start with our children so I’ll just jump in.  Yesterday, Nima walked in The NYC Kidney Walk in my honor.  This weekend, Abby was in the emergency room with me and picked up both Bear and my medications, as well as did our marketing.  Lara and her love are very often here doing whatever needs to be done and lifting our spirits.  Sean runs, takes, does making sure there’s time for what we need between his jobs. Now I ask you, can any mother, step-mother, almost mother-in-law be luckier?

Until next week,

Keep living your life!

Testing…One…Two…Three…

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

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

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

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

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

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

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

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

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

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

He was referring to both the approximately $60 billion dollars the government spends on treating CKD annually and the need for those over 60 to be routinely tested.  The address for this particular blog of his is http://www.huffingtonpost.com/leslie-spry-md-facp/kidney-disease_b_3860079.htmlGlomerulus-Nephron 300 dpi jpg

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

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

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

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

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

Until next week,

Keep living your life!