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!

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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!

The Three Musketeers

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

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

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

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

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

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

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

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

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

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

FullSizeRender (3)

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

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

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

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

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

“Vitamin D is responsible for:

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

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

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

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

“Calcium

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

Vitamin D

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

Phosphorusfish

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

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

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

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

Until next week,

Keep living your life!

 

Never Too Old to Learn

CoffeeCupPopCatalinStockLast week, we were delighted to have an overnight guest we hadn’t seen for a year or two. While we were all waking ourselves up the next morning, I asked him if he’d like some coffee.  Yep, he’s my family; that look of delight on his face when he thought of coffee confirmed it. Then I asked if he took milk in his coffee. Hmmm, more confirmation: he passed on the milk claiming lactose intolerance, another family trait. But when we got to the sugar question, he startled me. His response was something like no thanks, I have high cholesterol. After a moment of stunned silence, I asked why he connected cholesterol and sugar. He said his doctor told him to cut down on sugars to lower his cholesterol. Hmmm, very interesting.

This is the definition of cholesterol from What Is It and How Did I Get It? Early Stage Chronic Early Disease:FullSizeRender (2)

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. Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti, one of leading nephrologists in the U.S., explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

IMG_2982Good  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.

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL 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.FullSizeRender (3)

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.

As was suggested in this Everyday Health article (http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx) included in SlowItDownCKD 2015, exercise will help.

       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

statinsIf 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.

Finally, sugar. What did my cousin’s doctor mean about sugar’s role in lowering his cholesterol? This was news to me, so I researched. Sure enough, my cousin’s doctor was right.  According to Progressive Health at http://www.progressivehealth.com/sugar-may-be-the-cause-of-your-elevated-cholestero.htm:

Sugar is a good example of a carbohydrate with high glycemic index. It can, therefore, increase the amount of small, dense LDL particles in the blood.

Although, health experts used to advocate that we cut the amount of sugar we consume because high blood sugar can cause insulin resistance and increase the risk of diabetes, there is now another reason to cut down on our sugar consumption.sugar

A number of studies show that sugar can affect the kind and amount of cholesterol released into the blood.

So? According to the US National Library of Medicine National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297703/

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Is it CKD? Or Is It Arizona?

I’ve written about my dismay at thinning hair. By the way, I’ve come to terms with that rather than trying any product other than a new shampoo. What helped me come to that decision was a date day picture. My hair looked like straw in that picture and probably had for a while, although I hairhadn’t taken note of it.

It was dry, terribly dry. Well, I do live in Arizona. Our annual relative humidity index is about 31%. Thank you to Climatemps.com at http://www.phoenix.climatemps.com/humidity.php for this information.  For those of you (like me) who never thought about it before, I found the following excellent explanation of humidity at https://www.britannica.com/science/humidity.

“Care must be taken to distinguish between the relative humidity of the air and its moisture content or density, known as absolute humidity. The air masses above the tropical deserts such as the Sahara and Mexican deserts contain vast quantities of moisture as invisible water vapour. Because of the high temperatures, however, relative humidities are very low.”

sun-graphic1Hmmm, Mexican deserts…high temperatures… yep, that’s us. Wait a minute. My youngest and my step-daughters live here, too. They have beautiful, luxurious hair.  My delightful neighbor is a little older than my daughters, but her hair is always healthy looking and attractive. Okay, I’m older but I also have Chronic Kidney Disease.

Let’s take a look at what age can do to your hair first. (Saving the best for last, of course.) The Natural Society (I do occasionally check these sites.) at http://naturalsociety.com/2-factors-causing-thinning-hair-aging-not-one/ tells us:

“Low level of thyroid hormone can cause hair loss because it slows the metabolic rate throughout the body, a reason that low thyroid and weight gain often go hand in hand. This slowing extends to scalp follicles, resulting in premature release of the hair shaft and root, and a delay in producing replacement hairs. Early graying is another indication of low thyroid, as is the loss of hairs from the temporal edges of the eyebrows.”

Interesting, but it doesn’t talk about dryness, just hair loss… and my thyroid levels have always been fine.

Let’s try again. Prevention.com at http://www.prevention.com/beauty/anti-aging-care-thinning-brittle-hair  hit the nail on the head for me:

“But after you hit 40, the damage begins to go deeper, extending to the hair’s inner cuticle, known as the endocuticle.endocuticle

This type of damage is a result of the body’s reduced ability to repair itself, says Nicole Rogers, MD, assistant clinical professor of dermatology at Tulane University. In your 20s and 30s, the body (including your hair) bounces back from outside damage fairly quickly. But as you hit middle age, hair breaks down more quickly and the outer cuticle is repaired at a slower rate, leaving the inner cuticle vulnerable to the same outside attacks it once was shielded from.”

After you hit 40? That changed my entire outlook. At almost 70, I was actually lucky that I’d had so many years without dry hair. Amazing how information like this can reverse your thinking.

But I have CKD. Was this adding to the dry hair problem? I went to my old standby DaVita at https://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/4733 for help:

“… hair can become visibly abnormal when you develop a disease. Some people experience hair breakage or find that their hair falls out, or sometimes both.”

That tickled my memory. Oh, I remember writing this in What Is It and How Did I Get It? Early and Moderate Stage Chronic Kidney FullSizeRender (2)Disease.

“… oddly enough, my curly hair would become temporarily straight if I were incubating some illness or other…”

All right, that helps a bit, but – as usual – I wanted to know why. Another old favorite, WebMD at http://www.webmd.com/beauty/dry-hair-causes was helpful in a general, non-CKD, way:

“Your scalp isn’t making enough moisture. Hair has no natural lubrication. It relies on oils made in the hair root to keep your hair moisturized and looking lustrous.

Sometimes, hair doesn’t make enough oil, which leads to dry hair. (Likewise, roots in overdrive lead to oily and greasy hair.) As you age, your hair naturally makes less oil.”

Well, it looks like age, humidity, and disease – including Chronic Kidney Disease – all have something to do with dry hair. I sort of, kind of, remembered hydrating my hair with some home remedy when I was younger and had caused some damage by skiing in the sun or playing in a chlorinated swimming pool too much. Something about mayonnaise.  NaturallyCurley.com (How apt!) at http://www.naturallycurly.com/curlreading/products-ingredients/mayonnaise-hair-treatment-how-to/ explains:

“Mayonnaise does contain some hair healthy ingredients like lemon juice, vinegar and soybean oil which contain fatty acids and vitamins that can boost shine and act to seal in moisture.”

My method was ridiculously simple:

  1. Work the mayonnaise into your hair (It’s fun.).
  2. Plop on a shower cap.
  3. Leave it alone for about half an hour.
  4. Rinse out the by now gooey mess.
  5. Work at washing it out of your hair with a gentle shampoo.

I tried this last night and am very happy with the results. Maybe – in this case – it is just that easy.

I want to remind you that each of the websites I mention will give you more information about the particular topic you’re interested in.

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I had a really nice surprise the other day and wanted to share it with you. A little background is necessary first. I was a high school English teacher in New York City for 34 years before I retired and moved to Arizona. As such, I joined my union – The United Federation of Teachers. Because I did, I’m also a member of the New York State United Teachers. They publish a newspaper which has a section entitled ‘Kudos,’ that applauds the accomplishments of their members. As a retired teacher, I glance through the paper each time it arrives. This is what I found in the Fall 2016 issue:

 

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Thank you, thank you, thank you. These are non-Chronic Kidney Disease people appreciating writings about Chronic Kidney Disease.

Until next time,

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!

How Sweet She Is

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

CKD Treatment Interruptus

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Hair Today, Gone Tomorrow (Heaven Forbid)

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

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

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

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

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

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

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

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

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

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

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

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

GFR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Good Enough 

Yesterday, I carefully applied my eye liner, examined myself in the magnifying mirror, nodded to myself and murmured, “Good enough.” I’ve been saying that an awful lot lately and finally realized – once a valued, constant reader asked about the connection between worsening vision and Chronic Kidney Disease – that it may be due to my CKD.

This, after I’ve spent years attributing “Good enough” to the slowest developing ever case of macular degeneration,  the age related need for reading glasses, and my impatience with makeup. Of course, then I remembered that I couldn’t read a darned thing without the reading glasses and, that without ample light, even they didn’t do the trick.eye liner

Back to the drawing board, ladies and gentlemen. Here’s what DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/eyes-and-chronic-kidney-disease/e/4732 has to say about CKD and vision.

Diabetes and high blood pressure aren’t only the leading causes of chronic kidney disease (CKD). They’re also the leading causes of eye disease and loss of vision. If your renal disease is a result of either condition your vision may be at risk.

Some of the most common eye problems that occur in CKD patients are retinopathy, cataracts and glaucoma.”

Here are some quickie reminders before we continue. The American Diabetes Association at http://www.diabetes.org/diabetes-basics/  tells us, “Diabetes is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin.”

Book CoverI turned to What Is It and How Did I Get It? Early Stage Chronic Kidney for a reminder about high blood pressure: “A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

However, the American Heart Association has changed this a bit as of Dec. 2013. “The American Heart Association maintains its recommendation of initiating treatment — starting with lifestyle changes and then medication if necessary — at 140/90 until age 80, then at 150/90.” Yet, The Journal of the American Medical Association maintains that people over 60 should not be considered hypertensive until they register 150/90.

While that’s not new information to me, I did wonder how hypertension could affect your sight. The American Academy of Ophthalmology at http://www.aao.org/eye-health/ask-eye-md-q/how-does-high-blood-pressure-affect-vision came to the rescue here.

“If the blood pressure is very high it can be called malignant hypertension and cause swelling of the macula and acute loss of vision. Otherwise hypertension can cause progressive constriction of the arterioles in the eye and other findings. Usually high blood pressure alone will not affect vision much, however hypertension is a known risk factor in the onset and/or progression of other eye disease such as glaucomadiabetic retinopathy, and macular degeneration as well as blocked veins and arteries in the retina or nerve of the eye that can severely affect vision.”

My first response to this information was, “What’s an arteriole? A small artery?”  Time to find out. I turned to my old friend MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2335 for the definition.arteriole in eye

“A small branch of an artery that leads to a capillary. The oxygenated hemoglobin (oxyhemoglobin) makes the blood in arterioles (and arteries) look bright red.”

That makes sense.  Do you remember what glaucoma and/or macular degeneration are?

Back to another trusted source for one of the definitions: The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glaucoma/basics/definition/con-20024042.

“Glaucoma is a group of eye conditions that damage the optic nerve, which is vital to good vision. This damage is often caused by an abnormally high pressure in your eye.”

I sort of, maybe, remembered writing about macular generation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.Digital Cover Part 2 redone - Copy Sure enough, I found it.

“An eye disease that progressively destroys the macula, the central portion of the retina, impairing central vision. Macular degeneration rarely causes total blindness because only the center of vision is affected.” (according to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=10027). Oh, MedicineNet again.  That’s a good source for easily understood medical definitions if you’re looking for one.

Let’s say you don’t have diabetes or hypertension.  Does CKD affect your vision then?  Interestingly enough, most sites I pulled up talked more about CKD being caught during an eye exam than CKD causing vision problems… except in diabetic End Stage Renal Disease.  This is when you need to have your eyes carefully checked and often.

PubMed, part of the US National Library of Medicine, National Institutes of Health, at http://www.ncbi.nlm.nih.gov/pubmed/21784818 puts a bit of a different spin on the vision/CKD exploration. “Retinal abnormalities are common in inherited and acquired renal disease.”

journal_logoWow! This is from an older study – 2011 – conducted by the well-respected Clinical Journal of the American Society of Nephrology.  I don’t know if my CKD is inherited or acquired, but it is renal disease and I do have vision problems… and so does my valued, constant reader.

By the way, blurred vision may be an indication that you are suffering from uremia. This reminder brought to you by the Renal Network’s Kidney Patient News at http://www.kidneypatientnews.org/ckd/index.php.

Of course, I can almost hear some of you asking what uremia is.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was DIGITAL_BOOK_THUMBNAILof help here: it’s “the buildup of waste in the blood due to kidney failure.”

I really enjoy learning from the research I do to answer your questions, so thank you for another opportunity to do that. Just keep in mind that I’m not a doctor and you need to ask these questions of your nephrologist who will answer them or refer you to another specialist if need be.

Another birthday approaches – which I consider another opportunity to give you gifts.  Keep your eye on P2P’s Chronic Illness Awareness Buy and Sell’s page on Facebook and SlowItDownCKD on Facebook, Twitter, and Instagram in addition to this blog for Book Give- Away announcements.happy birthday

Last but not least, The  17th Annual Southwest Nephrology Conference and 4th Annual Convention of Cardio Renal Society of America will be held right here in Arizona at the We-Ko-Pa Resort & Conference Center in Scottsdale. The dates are March 11-12. I’ll be attending part of the time. Why not meet me? Register at www.swnc.org or by calling 1 (877) 587-1357.

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.

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!

What If…

Have you ever become anxious about the unknown, specifically the future? You are not alone.  Since you have Chronic Kidney Disease, you are so the opposite of not being alone. You have a progressive disease, one which affects two of the most important organs your body possesses.

thCAQ0P7T3Most days, I wonder if I’ll stay at Stage 3A for the rest of my life or – despite my best efforts – I’ll end up on dialysis and need a transplant anyway.  It’s one of those things I try really hard not to dwell upon.

Whoops!  I did it again.  Let’s backtrack a bit so we all know what I’m writing about. I went back to the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definition of Chronic Kidney Disease (CKD).Book Cover

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

According to DaVita.com, Stage 3A means:

A person with stage 3 chronic kidney disease (CKD) has moderate kidney damage. This stage is broken up into two: a decrease in glomerular filtration rate (GFR) for Stage 3A is 45-59 mL/min and a decrease in GFR for Stage 3B is 30-44 mL/min.

There’s a wealth of Stage 3 information at http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-3-of-chronic-kidney-disease/e/4749.

As usual, one definition leads to the need for another, in this case GFR.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through Glomerulus-Nephron 300 dpi jpgthe glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

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

Uh-oh, now we need to define both dialysis and transplant. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo

Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs.

There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.

As for transplant, WebMD at http://www.webmd.com/a-to-z-guides/kidney-transplant-20666 tells us

kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney.

I should mention that while there are transplants from both living and cadaver donors, both will require lifelong drugs to prevent rejection.faq_kidney_transplantation

All right, now that our background is in place, let’s deal with that anxiety.  Why worry (ouch!) if you have anxiety and you have CKD?

I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for help here.

Digital Cover Part 1In the August 16, 2012 post, I included this.

Poor mental health linked to reduced life expectancy

There  is  a  possibility  that  mental  health  problems  may  be  associated with  biological  changes  in  the  body  that  increase  the  risk  of  diseases such as heart disease.

In  this  study,  approximately  a  quarter  of  people  suffered  from  minor symptoms  of  anxiety  and  depression,  however,  these  patients  do  not usually come to the attention of mental health services. The authors say that  their  findings  could  have  implications  for  the  way  minor  mental health problems are treated.

The information was originally published on PyschCentral.com at http://psychcentral.com/news/2012/08/01/even-mild-mental-health-problems-linked-to-reduced-life-expectancy/42487.html

Not to be too morbid, but our life expectancy may already be reduced due to our Chronic Kidney Disease. Now we’re reducing it even further with our anxiety… even though we certainly may have cause to be anxious?

Time to deal with that anxiety.  But first, what exactly is anxiety?

The Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Anxiety is fairly explicit about what it is.

Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient’s personal history and memory, and the social situation…. a large portion of human anxiety is produced by anticipation of future events.

Nothing I want any part of! So how to I reduce my anxiety about my CKD so that I don’t further reduce my life expectancy?

I was so taken with Barton Goldsmith, Ph.’s advice that I wanted to post it all, but that would make this week’s blog far too long.  You can read what I omitted at https://www.psychologytoday.com/blog/emotional-fitness/201205/top-10-tips-reduce-anxiety

  1. If you are prone to anxiety you have two choices .Give in to it or learn to live with it.support
  2. When you wake up tomorrow start doing something right away, and keep busy all day. Taking action by doing something, almost anything, will help you work through your anxiety.
  3. Focus your attention on where the feeling of anxiousness is in your body and keep your attention there until the feeling moves or dissolves.
  4. Anxiety will grow if it’s not directed into some positive action.Find someone who needs you and lend him or her a helping hand.
  5. Talking to someone is one of the best ways to overcome your anxiety.
  6. Exercise is another good way to keep from letting your fears overwhelm you.
  7. Start a gratitude journal; write down three to five things that you are grateful for. Do this every night, it works and it’s very easy.
  8. The opposite of fear is faith.When you are anxious, a great way to get out of it is to find some faith. Believing that things will get better is sometimes all it takes to make it better.
  9. If watching the news fills you with anxiety – turn off the TV!
  10. Courage is not the absence of fear, but taking action in spite of fear.

Now it makes sense to me that Bear and I have a gratitude jar into which we drop a slip of paper containing one thing that made each of us happy each day. Now it makes sense to me that I look for ways to help others.  I think I’ve been warding off my own anxiety without knowing it.

Talking about not knowing, have you seen P2P’s Chronic Illness Awareness Buy and Sell page on Facebook?Part 2

Until next week,

Keep living your life!

Do I or Don’t I?

cruiseThree weeks ago, Bear and I embarked on my very first cruise.  For years, he’s been asking me to take a cruise.  For years, he’s been asking me to go to Alaska.  For years, he’s been asking me to ride on the Alaska Railroad. This is my second anniversary gift to him.

What makes it even better is that friends and family came together to take care of the wondrous cancer-free Bella in our home for the whole time we were away. There were people in and out at all times of the day and night to be with her.IMAG0269 (1)

Which brings us to today’s topic. Months ago, I wrote about a test my nutritional counselor suggested I take in order to take care of myself. I was warned it would be six weeks or more before I received the results of this blood draw. They’re finally arrived.

The test is Genova Diagnostics’ NutrEval for FMV amino acids. What was tested were antioxidants, B vitamins, minerals, essential fatty acids, digestive support, other vitamins, and amino acids. Pretty comprehensive, huh?

GenovaSince I need to research how Chronic Kidney Disease interplays with what supplements were recommended for me, I thought I’d share the ‘high need’ ones with you. First on our hit parade is in the antioxidant category. I’m glad I don’t need CoQ10 since that was in the normal range. Now I know why I ignore those tablets in the pharmacy. Vitamin A/Carotenoids, Vitamin C (Uh-oh, must have gone overboard avoiding this after the kidney stones), Vitamin E/Tocopherols were all in the borderline range, where I’ll let them stay for now.

a-Lipoic Acid, which is the same as alpha lipoic acid, however was in the high need range… as in a suggested dosage of 200 mg. Apparently the main food sources of this are:

organ meats which are high in phosphorouscpy broccoli.2

spinach which is one of the highest potassium foods

broccoli which I eat like it’s going out of style.

Lesser food sources are tomatoes, peas, Brussels sprouts and brewer’s yeast.

Davita.com has this to say about phosphorous. You can read more about it at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/high-phosphorus?-investigate-the-cause-when-you-have-kidney-disease/e/8003

Phosphorus is the second most common mineral in the body after calcium and is needed for good health. However, people with chronic kidney disease (CKD) have difficulty eliminating extra phosphorus from their bodies.

I’ve only got three servings of vegetables a day on the renal diet so I don’t want to waste them on high potassium choices or vegetables I don’t care for.  As for organ meats, I rarely eat red meat and don’t like the taste of these (Funny how I can remember how they tasted when I’ve lost so many other memories, isn’t it?). I can understand the deficiency.

Now this is peculiar. In researching this, I came across http://www.AlphaLipoicAcid.com which clearly states:

thiaminIf you’re deficient in thiamine (vitamin B1), a condition often associated with alcoholism, you shouldn’t take alpha lipoic acid.

The latest sources listed on their site are from 2007. That’s too long ago.

While I don’t drink, the NutrEval also showed I was deficient in and had a high need for Thiamin – or B1 – to the tune of 50 mg. I’d have to find another source to see if I can take this supplement.

I went to WebMD which is usually helpful to me. Hmmm, their latest source is 2012 but the site warns about taking this supplement with diabetic medication. It’s never easy, is it?

I seem to be going in circles here, so I’ll try this another way. According to my NutrEval Interpretation,

a-Lipoic Acid plays an important role in energy production, antioxidant activity (including the regeneration of vitamin C and glutathione), insulin signaling, cell signaling and the catabolism of a-keto acids and amino acids.

Mind you, this was taken from the Interpretation At-A-Glance for the patient.  The physician’s is even more detailed. I just looked at seven differentIMG_1229 sites, some selling this supplement, and read parts of three different books. Each one declares that a-Lipoic Acid should not be taken if you have a thiamine deficiency.

So do I take the supplement or not? Since I’m still worried about taking it when it’s suggested I not take it while being B1 deficient, I will send the physician report to my nephrologist.

Let’s flip this baby and see if I get anywhere researching thiamin deficiency.

Oh, my goodness!!!! I went to the Mayo Clinic at http://www.mayoclinic.org/drugs-supplements/thiamine/interactions/hrb-20060129 only to discover that thiamin and Metformin – which I take for pre-diabetes – don’t mix.

Caution is advised when using medications that lower blood sugar. People taking drugs for diabetes by mouth or insulin should be monitored closely by a qualified healthcare professional, including a pharmacist. Medication adjustments may be necessary.

Furthermore, there’s a caution on the site that supplements are not approved nor regulated by the FDA. All that’s offered are approximate dosages by age and length of duration that are LIKELY acceptable.  I’m becoming very uncomfortable with this.

So I am deficient in a-Lipoic Acid – whose supplementation may also affect my blood glucose – but am urged not to take it if I have a thiamin deficiency. Then I am urged not to take thiamin supplementation since it may interfere with the Metformin.  Or is this a hearty suggestion to stop the Metformin?  Sorry, folks, this is something for my nephrologist to help with.  I guess we’ll just have to wait until I can contact him.

It’s not life threatening and we were in Vancouver for five days before boarding the ship which gave me a lot of time to ruminate. I’m wondering if this test is the deciding point between alternative medicine and my nephrologist’s kind of medicine.

VancouverShould push come to shove, I’m not ready to leave my nephrologist and rely on alternative medicine. I’ve done well at keeping my CKD at stage 3A for the last eight years… with the help of my nephrologists. I’m not saying that you should do as I do, simply that this would not be my choice and I’d urge you to think carefully if it’s your choice.

I’m going back to looking at our pictures of Alaska’s Inside Passage.

Until next week,

Keep living your life.Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

The CKD/Diabetes Dance

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

Book Cover

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

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

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

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

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

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

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

Right away, your cells may be starved for energy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Paint on My Nails

I am happy to say that we have had quite a few celebrations lately.  Abby successfully changed careers from insurance to municipal funding.  Lara was promoted to the first female Krav Maga head instructor in Phoenix. Nima started her New York tour company (Spellbound… give her a call.). firworksOne of my son-in-laws changed careers, too, and is now the CEO of an established firm.  Oh, and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was published.

Having four grown daughters now and in the throes of Macular Degeneration which is now at the point of I-can’t-see-my-nails-clearly-enough-to-do-them-myself (Why, oh why, couldn’t it be I-can’t-see-the-dishes-clearly-enough-to-do-them-myself instead?), I caved.  I don’t really like anyone fussing with any part of my body, but I wanted to look really nifty for each of these celebrations.  So I went for a manicure/pedicure again…and again…and again… and then I got to thinking.

Indeed, there is a relationship between Chronic Kidney Disease and nail polish, but it isn’t exactly what I expected.  I scurried right over to DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/  and found the following.

Nitrogen waste products build up in people with CKD, which can lead to damaged fingernails and toenails. Show your doctor if you have any abnormal change in your nails such as:

  • Yellow or opaque coloring
  • Brittle nails
  • Pitted nails (can easily break off or fall off)painted nails
  • Linear depressions across the fingernail (called Beau’s lines)
  • Ridge-shaped nails
  • Raised ridges, thin and concave shaped (called koilonychia)
  • White streaks, spots on the nails (called leukonychia)

It’s clear you can’t see these damage indicators if you can’t see your nails.  All right then, maybe I could have my nails done for the occasions, then take off the polish or the gel tips after.  Would that work for me, I wondered?

The concern over the chemicals found in nail polishes—and gel manicures—are {sic} not new, but the link to cancer, however, is. In a recent article published in the  Journal of the American Academy of Dermatology, Chris Adigun, M.D., an assistant professor of dermatology at NYU School of Medicine, emphasized the dangers of frequent use of gel manicures.  ”The essential UV light required during the application of the gel is a risk factor for skin cancer,” wrote Dr. Adigun.  “[And] in general, any manicure left in place for an extended period of time is not a good idea Journal of American Dermatologybecause you are a not seeing what is going on underneath the nail polish,” he says.

Frequent gel manicures can lead to nail thinning, brittleness, peeling, and cracking. Or worse, gel polish can hide nail discolorations that can signal various lung, heart, kidney {my italics} and liver diseases, as well as diabetes and anemia.

VidaVibrante.com at http://www.vidavibrante.com/2013/08/19/gel-manicures-when-too-much-of-a-good-thing-is-bad-for-your-health/  is not a site for CKD patients specifically, nor is it a medical site.  Yet, that’s where I found the above medical cautions. This is not looking good.

I was surprised to find that WebMD at http://www.webmd.com/beauty/nails/20120411/is-your-nail-polish-toxic had this information.

In recent years, some nail product makers have removed these chemicals {This refers to dibutyl phthalate, toluene, and formaldehyde.} from their products, then labeled them as non-toxic.

“What we found out is that in many of the cases the label was inaccurate,” Lang tells WebMD. “And that’s really what our message is. We don’t know if our samples are representative of the industry.”

Some products that did not carry a toxic-free label actually had none of the chemicals in them, the researchers also found.

Encarta Dictionary tells us toluene istoulene

a colorless liquid aromatic hydrocarbon resembling benzene, but less flammable. Use: solvent, high-octane fuel, organic synthesis.

And we put that on our nails?  Willingly?  I think that’s the end of thinking about gel tips for me, but does it mean I have to give up this new practice of having my nails done entirely?  Even for special occasions?  Oh, okay, lots of special occasions.

Ummm, so what – if any – brands are safe? I jumped over to EcoWatch at http://ecowatch.com/2014/02/19/7-nontoxic-nail-polish-brands/ for some brands. Zoya, Piggypaint, Suncoat, Honeybee Gardens, RGB, Sheswai, and LVX are the brands they named.

I don’t know very much about cosmetics – including nail polish – but I’m certainly willing to give these brands a try. Allow me to join the rank of those who misquote the Bard’s line from Macbeth: Vanity {It’s really “frailty.”}, thy name is woman.Kidney Arizona

But I’m not misquoting this. The Phoenix Kidney Walk is April 19th and we have a team!  SlowItDown is the umbrella group (not really sure that’s the right word) for all the books and the blog.  Remember asking me to come out from behind the typewriter?  This is it!  Use the walk as an excuse to introduce yourself to me or, better yet, join the team.  Just in case you don’t remember how:

Go to Kidneywalk.kintera.org. You’ll see “Register Here” in blue on the top left. Click it. Then you’ll need to sign an agreement, click join a team, choose SlowItDown from the dropdown. Hit continue and it will ask you to create a sign on with the usual basic questions asked.

If you’d prefer not to walk, but do want to donate, please do that in Team SlowItDown’s name.  Thanks, all.

Big news!  Every third order for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 will be FREE from now until the end of the month.  We already had an order-it-free day on my birthday and now Amazon has come up with this deal.  Yay, Amazon.  I urge you to The_Book_of_Blogs-_M_Cover_for_Kindletake advantage of this. To make certain there’s a free book in the deal for you, ask two friends to order the book at the same time.

Keep an eye out for Part 2, also.  I’m working really hard to have that out by the end of this shortened month. Funny story about why there’s a Part 1 and a Part 2.  No matter how I edited, cut, shortened the original version of the book, it came out to over 600 pages.  I could barely hold it!

Until next week,

Keep living your life!

Another Infection? 

I noticed I often develop an infection at the site of a simple cut, one I treated with antibiotic when I first received it. You know I’m a writer, but did you know I like to write long hand sometimes?  I think those yellow legal pads have extra thin paper made purposely for paper cuts.

There are times I am hopeless in the kitchen, too.  That’s usually when I have my mind on my writing or the Victorian murder mystery I’m reading.  firworksWell, lately I’ve had my mind on my daughter’s new career, my step-daughter’s promotion to first female head instructor for Krav Maga here in Phoenix, the publication of my new book and getting the third one ready for print, my almost son-in-law’s new career {another new career!}, or our trip to Meteor Crater.

I digress.  Back to infections. This made no sense… until I remembered that my immune system was already compromised by my Chronic Kidney Disease.  OMG!  As if we didn’t have enough to deal with concentrating on diet, exercise, sleep, rest, inoculations, creatinine and GFR monitoring. Might as well take a deep breath and explore this one, too.

So, just what is an infection anyway?  According to the Free Dictionary (Medical) at http://medical-dictionary.thefreedictionary.com/, it’s

 invasion and multiplication of microorganisms in body tissues, especially that causing local cellular injury due to competitive metabolism, toxins, intracellular replication, or antigen-antibody response.

downloadUhhh, this definition may have exacerbated our confusion so we’ll need a few more definitions. I’d say we all know that toxins are poisons, and microorganisms are those teeny, weeny little living things you can’t see with the naked eye.

As for intra – Hunter College Latin and Greek roots class a million years ago to the rescue – that means within. Add cellular and you have within the cells. Add replication and you end up with bacteria making copies {replication} of itself within the cells to the best of my knowledge.

Undergoing immunology treatments myself, I remember the phlebotomist in the office telling me that the layman’s term for antigen-antibody reaction is allergic reaction.

And now?  Oh right.  What do frequent infections have to do with our already compromised immune system.

This is what I found on DaVita’s site at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/infections-and-chronic-kidney-disease/e/4734

People with kidney disease  can be more prone to infection because of related conditions such as diabetesinadequate calorie and protein intake, and the access site can be vulnerable to infection.

Now, we all know I’ve been successfully fighting to stay pre-diabetic for years, so I’m not a diabetic.  And we all know I’m at stage 3A, so I have no access site.  That’s something you encounter when you start dialysis at stage 5.

Ahhhh, but I am restricted to five ounces of protein a day and 1200 calories. Neither of these is inadequate for a woman my age and weight.  Or are they?ham

I didn’t know, really. But a site with the unlikely name of Breaking Muscle seemed to.  I found them at http://breakingmuscle.com/nutrition/how-much-protein-do-you-need-science-weighs. Their answer? .36 grams/pound/day.

Apparently, you just multiply what you weight by .36.  Let’s say I weighed 125 pounds {Will you please get up off the floor and stop laughing?}. I’d need to eat a minimum of 45 grams of protein. That’s less than two ounces.

What about the days I just don’t feel like eating any protein?  It’s surprising how you can lose your taste for it.  Or maybe I’m just not bothering to consume enough calories each day.  Considering that I’m not underweight {hah!}, these are both hypothetic situations.

Kidney Service China at http://www.kidneyservicechina.com/ckd-basics/1546.html explained the connection between CKD and infection this way.

Besides {proteinuria}, damaged kidney can cause lots of toxins and wastes’ accumulation in blood, while these substances will be transplanted to everywhere of our body. Many of them are harmful to the organs and tissues of our body, and they can cause damage to our immunity. For example, marrow is a major organ of our immune system, while some toxins can inhibit its function of producing cells.Blood Oxygen Cycle Picture 400dpi jpg

This makes sense to me. I visualize it as bacteria streaming into your cut from the outside, while the already overloaded blood is doing its darnedest to keep them out… and not succeeding in its sluggish, polluted state.  Hope that’s not too violent an image for you.

Most of the other information I was able to dig up had to do with ESRD {end state renal disease} and the inflammatory state of your body at this stage.  I did find it interesting, but we’re not quite there yet – thank goodness.

The_Book_of_Blogs-_M_Cover_for_KindleChanging the subject: the digital version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is free today.  That’s right; the digital version of the book is free today. Why?  As a reward for reading the entire blog instead of just the first few paragraphs.  Got you!  It’s because today is my birthday and I wanted to give you a present.  Also because I couldn’t think of a better way to get the word about moderate stage chronic kidney disease out there.  Thank you for celebrating with me.

Oh, the print copy of the book is being released today, too.  Now that’s a present for me.  Both are available on Amazon.com.  Do let me know what you think of the cover.

And, please, write a review after you’ve read the book. I’ve had some of my 17, 000 readers in 109 countries tell me they aren’t writing a review because they don’t want their name in plain view for the entire world to see.  Guess what? You can sign as anonymous, or use your nickname,  or make up an alter ego name and use that.

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“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.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”glomerulus

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

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

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  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.stages chart

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.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

Keep living your life!

Sleepus Interruptus

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

I finally decided to write about my first choice.  This is yet another indication that our hunches are right.  My hunch after a night of waking up just about every hour was to write about CKD and interrupted sleep.  I should have listened to myself and saved all that time.baby-shots-5

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

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

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

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

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

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

‘We think there may be a causative factor here; that sleep apnea may be causing directGlomerulus-Nephron 300 dpi jpg

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

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

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

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

This particular study was conducted in 2005.

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

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

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

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

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

This is from a 2010 study.

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

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

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

WebMD at http://www.webmd.com/sleep-disorders/guide/sleep-101 tells us,

Victorian clock“During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds

bone and muscle, and appears to strengthen the immune system. As you get older, you

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

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

   with age.”

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

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

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

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

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

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

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

to be eliminated.”

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

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

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

Until next week,

Keep living your life!

From Deficiency to Support

happy birthdayI was invited to their joint birthday celebration at The Hotel Valley Ho in downtown Scottsdale by one of my daughters and her good friend. That’s a place I’ve wanted to see since it has some historical value. It was nice, but what was nicer was sitting next to a young friend who happens to be a ball player. baseball player

We both ordered vegetarian dishes. (Their asparagus with lemon zest was very tasty.) He knows I have Chronic Kidney Disease and started talking about my renal diet… and the limitation of five ounces of protein per day. “Don’t you worry about protein deficiency?” he asked with alarm.

And that got me to thinking. According to The Centers for Disease Control and Prevention at http://www.cdc.gov/nutrition/everyone/basics/protein.html, as a woman above the age of 19 and all the way up to beyond the age of 70, I need 46 grams of protein a day.

Well, how many grams are in an ounce? I went directly to AskNumbers.com at http://www.asknumbers.com/OuncesToGramsConversion.aspx for the answer.  While I’m not innumerate (lacking mathematical ability), I don’t have the patience for long, involved mathematical formulations. That’s where I found both a convenient ounce to gram conversion calculator and a conversion chart.

According to the site,

“5 Ounces = 141.7476155 Grams.”

That’s way more than the 46 grams of protein required by a woman my age. So what was my friend concerned about?

Men in the same age range need 56 grams of protein as I saw on the CDC site mentioned above. That’s still only 1.9753418664 Ounces. This wasn’t making any sense to me.

Book Cover

I went right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of protein:

      “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”

proteinI decided it wasn’t as important to know what they were as it was to know what they do.

I found the definition for hormones in my book:

                               “Gland produced chemicals that trigger tissues to do whatever their particular job is.”

Got it!  Sort of like a catalyst to get those tissues working.

I went to Dictionary.com at http://dictionary.reference.com/browse/enzyme for the medical definition of enzyme:

“Any of numerous proteins or conjugated proteins produced by living organisms and functioning as specialized catalysts for biochemical reactions.”

There’s that word ‘catalyst’ again.

Well, what about antibodies?  Using the same source, I found this:

                                                “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. “

Lots of definitions here, but the important part is that they all explain how important protein intake is. I think my friend’s error was not in worrying about protein deficiency, but in getting the math confused.  I thank him for his concern nonetheless.

I think that’s as far as we can go with my friend’s concern, but I think I’ll address vegetarian protein sources before I leave the topic since we’re all pretty much aware of meat protein sources (although a few of those are on this chart, too). Check with your doctor to see if these are on your renal diet.

protein sources

 

Moving right along…some readers have asked for online support groups that are not on Facebook since they – these particular readers – aren’t. I’ve also included telephone and face to face support groups since I know some of you receive the blog when someone with a computer prints it out to give to you. Please remember these are not recommendations.  Some I know and are comfortable with, others are new to me.

My first suggestion – always my first suggestion – is DaVita.com at http://forums.davita.com/activity.php.  This is the same wonderful group that has brought CKD education into the community via SlowItDown and also offers CKD classes at their facilities throughout the world.

Lori Hartwell’s Renal Support Network offers periodic patient meetings (Go to http://www.rsnhope.org/meetingssupport-group/ to check availability and to register.) and online support at all times at http://www.kidneyspace.com/

American Association of Kidney Patients (AAKP) offers a listing of support groups by state at https://www.aakp.org/community/support-groups.html. Not all states are listed, including Arizona. These are in person meetings.

The National Kidney Foundation (NKF) has peer matching telephone support. You will need to be interviewed first.  You can find more information at http://www.kidney.org/patients/peers. You can also call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org to participate.peerslogo

WebMD has the Kidney Disorders Community at http://exchanges.webmd.com/kidney-disorders-exchange.

Drugs.com at http://www.drugs.com/answers/support-group/chronic-kidney-disease/ offers a forum type support group in which you ask a question and answers are offered.  This is not real time, but may prove valuable.

For my Australian readers, you can join a Kidney Club by emailing matty.hempstalk@kidney.org.au or calling 0404 177 748.  There’s more information at http://www.kidney.org.au/ForPatients/KidneyClubs/tabid/615/Default.aspx

There are even Meetup Groups for CKD patients.  Take a look at http://chronic-kidney-disease-ckd.meetup.com/.  Presently, there are two in the United States and one in Australia, but they are open to starting more.  Rephrase: Meetup is open to you starting one in your area.

The more I researched, the more I realized that each state, and even each city, in the U.S. has their own groups.  I gather it’s the same in other countries.  If none of these is what you’re looking for, I’d suggest an online search for CKD support groups in your area.support

There are also blogs about CKD… and you thought mine was the only one.  Again, I’m not recommending any of these, simply informing you they exist:

From Mexico – http://mychronickidneydisease.blogspot.com/

Well this is surprising.  Despite researching several times, I couldn’t find any other blogs from a patient’s perspective that are still in existence.  I have not included the blogs on the support groups I listed above. Perhaps you know of some others?

It’s been a heck of a week.  Thank you for your good wishes for my dog.  Sweet Ms. Bella has her stitches removed and then sees the oncologist on Wednesday. She is a delicious being!IMAG0093

Now we also need to deal with other being’s physical conditions.  It seems I’m the healthiest one I know, even with the CKD. Hmmm, wonder if it has to do with our age group.

Until next week,

Keep living your life!

 

 

 

 

 

I Can Hear The Blood Rushing in My Ears

July 4thHope you had a wonderful Independence Day weekend. Ours was filled with water walking thanks to the Vlasitys, Olsens, and Artecs who all offered their pools for Bear’s physical therapy, board games after we discovered our neighbors – Linda and Mike Olsen – played our favorite domino game, a movie (Train Your Dragon, Two… oh yes!), plus dinner out at Macaroni Grill, a restaurant where I actually have choices that fit in the renal diet. We even got to the only remaining bookstore on our side of The Valley of The Sun. Quiet, fun activities.

During that time, my blog was in the back of my mind. It’s always in the back of my mind. Which is why I can’t stop writing it, by the way. This weekend, I kept thinking about the subtle connection between hearing and Chronic Kidney Disease.

The topic came about in the usual way: I complained of hearing poorly and my ever vigilant primary care doctor, Dr. Zhao of Deer Valley Family Practice right around the Arizona style corner (three and a half miles), suggested I might want to have my hearing tested by an audiologist. This was right after I passed the Medicare Annual Wellness Visit hearing test with flying colors despite my complaints.

Off I went to Dr. Kristin Wells of North Valley Audiology… for the third time in five years. Her assessment was that my hearing was just fine. Go figure, but she did applaud me for telling her I had CKD (and sleep apnea, but that’s another story…uh, blog).test

Why did I do that you ask? Well, as I wrote on my March 15th, 2011, blog during National Kidney Month:

“Research shows that hearing loss is common in people with moderate chronic kidney disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate chronic kidney disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

You can enter hearing in the topic search to the right of this blog read the rest of that blog.

earHow moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found at http://www.hear-it.org/More-than-half-with-Chronic-Kidney-Disease-have-hearing-loss – which has an online hearing test – and not most, but all of the other sites I searched. This comes from the same study I used in my 2011 blog. That study was completed in 2010… four years ago.

“University of Sydney, said:
The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”cochlear tissue

I couldn’t visual this inner ear tissue, so I started looking for images. You can see them all over this page.

Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary at http://www.etymonline.com/index.php?term=toxic tells us the word toxic is derived directly from Late Latin toxicus “poisoned.”

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

ear tissueAccording to WebMD at http://www.webmd.com/a-to-z-guides/hearing-loss-causes-symptoms-treatment “Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.” Of course!

I went right to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to figure out how. On page 97 (you know the drill: digital readers use the search function), blood pressure 300dpi jpgthere is a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes.

This is the sentence that clarified the issue for me (page 99): “Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.” That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.

I had been hoping for more recent research, but sometimes you just have to deal with what you get.

Talking about getting, Dr. Nick Held of ASU sent a long involved comment. Basically it is full of opportunities to study about Chronic Kidney Disease. While most of it is a bit too medical for me, you may be looking for just this opportunity, so here’s the address: http://www.nejm.org/toc/nejm/medical-journal. You’re looking for Vol. 371, No. 1. Many thanks, Nick, and thank you for the accolades, too.

Things are quiet here this summer. No word yet from either the radio show or the article in Medicare’s publication about when they’re going to happen. No word on SlowItDown either. I’ll bet people are going directly to DaVita.com for their Chronic Kidney Disease education. You are, aren’t you? Hey, get that CKD education any way you can.

The book lives! I do believe there may be another book about CKD fairly soon: The Book of Blogs. This blog was born when an Indian nephrologist contacted me to explain that he Book Coverthought What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was just what his new patients needed, but they were too poor to even pay bus fare to keep their appointments.

I was very new to social media, but figured if I wrote a blog, he translated it and then printed it, his patients who could keep their appointments could read it and bring it back to their villages with them for other CKD patients to read.

Now I’m looking at it the other way: I have more than a few readers who are not comfortable with anything electronic. They need a book in print. I’m seeing what I can do about that, folks.

Until next week,
Keep living your life!

Life Is Just A Bowl Of Cherries

Here I was all ready to write about sulfur drugs and CKD or hearing and CKD when I received an email from  Cindy Bruggner who’d just bought some good looking bing cherries but wasn’t sure whether to eat them or not.  We all know that cherries simply don’t last that long, so – Cindy – this one’s for you.

cherries

The big issue about eating cherries when you have Chronic Kidney Disease is their potassium content. I went straight to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to see what I’d written about this. In the Glossary (on page 134) I found this definition:

“One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

While that’s true, we’re going to need more to help Cindy out. So I turned to Chapter 8: The Renal Diet (page 75).

“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….

Book Cover…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 ….”

I checked with the National Kidney Foundation http://www.kidney.org/atoz/content/potassium.cfm about those levels just to be sure they hadn’t changed since the book was published.  They haven’t.

That got me to wondering why cherries are considered good for the general population, but not CKD patients. So, of course, I did a little research.  Green and Healthy at http://www.greenandhealthy.info/kidneydisease.html#ckd suggests those without kidney disease eat cherries for the following reason:

“According to research from Michigan State University tart cherries contain anthocyanins [Thought you might like to know this means natural pain relieving and anti-inflammatory properties], bioflavonoids, which inhibit the enzymes Cyclooxygenase-1 and -2, and prevent inflammation in the body. These compounds have similar activity as aspirin, naproxen and ibuprofen.”

Sounds good to me since we can’t take some of those pain relievers, but cherries have the same effect.  Something was nagging at me though.  Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. As I read page 3, I realized why:

“The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.”kidney location

Well, healthy kidneys do, but just how effective are your compromised kidneys at doing this job? I went to DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/lifestyle/top-15-healthy-foods-for-people-with-kidney-disease/e/5347, but in addition to the usual warnings about potassium levels, I found this:

“1/2 cup serving fresh sweet cherries = 0 mg sodium, 160 mg potassium, 15 mg phosphorus

Cherries have been shown to reduce inflammation when eaten daily. They are also packed with antioxidants and phytochemicals that protect the heart.”

Does that mean they’re good for CKD patients?

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.

Oh Cindy, I’m sure I’ve only added to your confusion.  Watch your potassium levels.  Look them up on your last blood test.  Why not give your nephrologist a call, too, just to be sure.  Do you have a renal nutritionist? He or she would know far better than I since this question of whether to eat the cherries or not is so individualized.

Then we have stages.  I am stage 3, which I used to think was early stage (hence the book’s title) but now realize is moderate damage.  I don’t know what stage Cindy is, but I do know the dietary rules change when you reach end stage and I’m going to guess they’re even different for those on different kinds of dialysis and those who are transplants.stages chart

So Cindy’s question is sort of asking me which sexual position is best for her.  I’m purposely being provocative here so that you’ll see just how individualized the renal diet is. What’s best for you depends on your needs.  Call the nutritionist!

Knowing End Stage Renal Disease is not my area of expertise, I took a peek at National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH), at http://kidney.niddk.nih.gov/KUDiseases/pubs/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.  Apparently, potassium could be a problem here, too. This is what I found:

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

Okay, cherries can be a problem.  Then I started wondering if it mattered what type of cherries they were. I found at least 18 different kinds, but none of the websites discussed potassium.

I learned more about cherries and potassium than I thought I wanted to.  I’m sure you did, too, but I offer you the same advice I offered Cindy: check with your renal nutritionist or nephrologist – always.  I am not a doctor, but rather someone who researches CKD on a layman’s level.  Cindy, thanks for asking.

Holy cow!  July 4th weekend is sneaking up on us!  I’m looking forward to as much water walking as we can get in since two, not one, but two neighbors have offered us the use of their backyard pools – one actually a lap pool – and we have discovered our neighborhood pool which charges only $20 per person a season.  We may not have the ocean out here, but we’ve got lots of pools.  Here’s hoping you enjoy your holiday weekend.

Kidney Book CoverWhoops!  Almost forgot to include that SlowItDown will now be sharing the book’s Facebook page, twitter account, website (http.gail-rae.com), email address (myckdexperience@gmail.com) and telephone number (602-509-4965).  I was getting run down trying to run the two separately in addition to my personal one!

Until next week,

Keep living your life!

Baby, It’s Hot Outside

I just caught up to the fact that it’s June.  No, it wasn’t the calendar that told me, but the temperature.  We live in Arizona and its hot, dry heat or not.  That means cooling off any way you can. IMG_0584

This weekend, we finally took the three hour round trip drive to visit my friend and her family.  Her five year old daughter proudly showed off the family’s new addition since I’d been there last – a wonderful, cooling swimming pool.  I was tempted, but the 105% temperature kept me inside with the air conditioning.

That’s when I was offered some filtered water.  Did I want ice? I was asked.  I immediately shook my head.  “CKD, no ice, please.”

My friend cocked her head.  Her father had had a kidney transplant so she was well aware of the renal diet.  True, her father was treated in Korea, so there might have been some differences in treatment, but ice?

She asked me why and I immediately knew what I was going to blog about today.

For years, I’ve misunderstood something my nephrologist said.  I heard, “Don’t use ice.”  What he really said was something like, “If you use ice, you need to count the cubes in your fluid intake.”

I’ve spent time since Saturday researching the ice question and found nothing about avoiding ice.  I did find one warning about cold beverages from DaVita at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894 : “Be careful of very cold beverages, which can cause stomach cramps.”

The lesson I learned from this misunderstanding of what I thought I heard is to recheck what you think you know every once in a while.  After all, I thought I had the diet down pat.

Hah!  I forgot that I was terrified when I was first diagnosed and thinking I was going to die imminently. I adhered strictly to what I heard and, apparently, adhered just as strictly to what I thought I’d heard.

sun-graphic1Wait a minute… maybe I need not have avoided the heat, either.  I researched that, too.  Just as with ice, I found a general warning about the elderly, but nothing specific to CKD.

““With the elderly, the heat accumulates in their bodies over hours to days. If you have a long heat spell, the elderly person accumulates heat through each of those days because they can’t really eliminate or dissipate the heat,” explains Dr. Crocker. “Sometimes it’s because of a medication, sometimes it’s a lack of mobility, or in some cases the older you get, the less active your sweat glands are, so it becomes harder and harder for you to eliminate heat.”

This is from The Austin Diagnostic Clinic at http://www.adclinic.com/2012/08/hot-summer-days-challenging-dangerous/#.U5X-ZKROUY0.

By the way, National Public Radio (NPR) has a fascinating blog about the term ‘elderly’ at http://www.npr.org/2013/03/12/174124992/an-age-old-problem-who-is-elderly.  While 65 was the accepted age for elderly here in the USA for quite some time, this is now under debate.  I, however, still envision an elderly person as frail and delicate… something I’m not.

But, again, there was nothing specific to CKDers in the quote above.  In thinking about it, I began to wonder if the risk of dehydration from the summer heat is the problem for us.

According to The National Kidney Fund at http://www.kidney.org/atoz/content/kidneysnottowork.cfm

“Kidneys can become damaged if they are not getting good blood flow. This can happen if you become dehydrated or seriously ill.”

Aha!  This was starting to make sense.  WebMD at http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview explains this for us.

“Usually your body can reabsorb fluid from your blood and other body tissues. But by the time you become severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.”ice water

Okay, so we know we need to drink fluids, especially in hot water. Our kidneys are already having a hard time cleaning our blood effectively and we are reabsorbing ineffectively cleaned blood prior to this point of dehydration.

But how do we know if we’re becoming dehydrated? What are the symptoms? I turned to my standby, the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/dehydration/basics/symptoms/CON-20030056 for the symptoms of mild dehydration:

  • Dry, sticky mouth
  • Sleepiness or tiredness — children are likely to be less active than usual
  • Thirst
  • Decreased urine output
  • No wet diapers for three hours for infants
  • Few or no tears when crying
  • Dry skin
  • Headache
  • Constipation
  • Dizziness or lightheadedness

And then I laughed.  I experience one or more of those symptoms at one time or another.  The clinic does make the extremely helpful point that the color of your urine is a good indicator of dehydration. If it’s clear or light in color, you’re fine.  If it’s dark, start drinking!  Interestingly enough, having CKD is already a risk factor for dehydration so let’s not make it worse for ourselves.

So how do we prevent dehydration?  What can we do if we can see if starting?

Obviously, drinking more fluids will help. I’m limited to 64 ounces in a day, but I get creative in summer. Sometimes, I will have that half cup of ice cream.  Watermelon magically (hah!) appears on the table.  Now that I realize I don’t have to avoid ice, they too will become part of both the anti-dehydration campaign and the anti-dehydration campaign in our house.watermelon

I’m not sure if this is common knowledge, but dehydration can also cause kidney stones.  If you don’t have the fluid in your body to prevent crystallization, crystallization is more apt to happen.  Kidney stones are,

“Stones caused in the urinary tract and kidney when crystals adhere to each other.  Most of those in the kidneys are made of calcium.”

(Love this author’s style).  That’s from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, p. 133.

Talking about the book, it’s clear that digital outsells print and that in foreign markets, England outsells other countries.  I wonder if it’s the languages.  I’d thought about translations, but how would I be able to edit the texts if I don’t know the languages myself?  I’ve tried online translation, but the results are never quite what I originally wrote in English.

May you stay cool and hydrated.

Until next week,

Keep living your life!Book Cover

It’s the Salt of the Earth

passoverPassover begins tonight at sundown. A Guten Pesach for all those who celebrate.  We’re hosting the first seder here tonight.  Only  three of our eleven guests are Jewish, although there is a hint of Jewish blood in a few others.  All are welcome… including Elijah.

Yesterday, I attended a Palm Sunday Brunch hosted by an acting colleague. Unfortunately for me, none of the food she carefully made from scratch was on the renal diet (I can’t eat many of the traditional Passover foods either), so I did my taste-each-food-to-be-polite thing. I had such minimal amounts of each that I wasn’t doing damage to my kidneys, but I also discovered new tastes.

I realized none of this food tasted salty to me, as food not on the renal diet usually does. When asked, she told me she doesn’t use salt but spices instead. This stuff was delicious! If I weren’t on the renal diet, I would have asked her for the recipes for each dish she’d made.

Nancy’s not using salt in her cooking got me to thinking if we needed salt at all. Actually, I knew we did, but I didn’t know why. I poked around and found the following on an NPR blog:

“If you don’t keep up your sodium level in your body, you will die,” explains Paul Breslin, a researcher at the Monell Center, a research institute in downtown Philadelphia devoted to the senses of taste and smell. (Breslin also teaches at Rutgers University.) “

That’s extraordinarily blunt, but there’s quite a bit more about this at http://www.npr.org/blogs/thesalt/2012/12/20/167619010/the-paradox-and-mystery-of-our-taste-for-salt. What I got from this is the same question I usually have: why?Whatever Happened to Common Sense?

I remembered that salt regulates your hydration but decided to check this anyway. According to The Royal Academy of Chemistry at http://www.rsc.org/get-involved/hot-topics/Salt/do-we-need-salt.asp,

It is the sodium (ions) present in salt that the body requires in order to perform a variety of essential functions. Salt helps maintain the fluid in our blood cells and is used to transmit information in our nerves and muscles. It is also used in the uptake of certain nutrients from our small intestines. The body cannot make salt and so we are reliant on food to ensure that we get the required intake.

An EurekAlert at http://www.eurekalert.org/pub_releases/2013-08/mu-anr082013.php made me realize another important function of sodium, the element our bodies cannot produce:

Researchers at McGill University have found that sodium – the main chemical component in table salt – is a unique “on/off” switch for a major neurotransmitter  receptor in the brain. This receptor, known as the kainate receptor, is fundamental for normal brain function and is implicated in numerous diseases, such as epilepsy neuropathic pain.

Normal brain function!brain

Just in case you didn’t take chemistry in high school or college – which I admit was too intimidating for me – salt is 40% sodium and 60% chloride. It’s the 40% sodium that causes a problem if you have too much of it. This is a quandary. You need salt to live and function well, but too much can kill you via raising your blood pressure.

There is an ongoing controversy of how much salt we need on a daily basis. This is what is on Colorado State’s website at http://www.ext.colostate.edu/pubs/foodnut/09354.html:

The Dietary Guidelines for Americans recommended reducing sodium intake to no more than 2,300 milligrams per day. However, those with hypertension, over the age of 51, or who are African American, should consume no more than 1,500 milligrams of sodium per day. This recommendation includes over half of all Americans.

But have they taken into account the fact that we sweat during the summer or when we work out and lose a great deal of sodium that way? Does that mean we need more sodium during these times? And how do you judge how much sodium is too much anyway? Or do we use the Goldilocks Theory of ‘just right’ here.

All right, then. The next logical question would be how much is usually too much. Hello Medical News Today at http://www.medicalnewstoday.com/articles/146677.php. That’s where I found this handy, dandy, how much chart.

food labelHow to read food labels and identify high and low salt foods

You should check the labels of foods to find out which ones are high and low in salt

content. If the label has more than 1.5g of salt (or 0.6g of sodium) per 100g it is a

high salt content food.

If it has 0.3g of salt (0.1g of sodium) per 100g then it is a low salt content food. Anything in

between is a medium salt content food.

  • High salt content food = 1.5g of salt (or 0.6g of sodium) per 100g
  • Medium salt content food = between the High and Low figures
  • Low salt content food = 0.3g of salt (0.1g of sodium) per 100g

The amount you eat of a particular food decides how much salt you will get from it.

As renal patients, we need to pay special attention to the amount of sodium we ingest. I’m on the Northern Arizona Council of Renal Dietitians’ diet which permits 2,000 mg. of sodium a day. That’s really limited since a teaspoon of salt has about 2,300 mg. of sodium. Of course, now that I’m over 51 (okay, way over), I’m down to 1,500 mg. of sodium daily.

How do I keep within my guidelines, you ask? It’s become easy, but don’t forget I’ve had seven years to perfect it. We do have filled salt shakers available in the kitchen, but they’re invisible to me. I use spices in cooking instead. My best friend there is Mrs. Dash’s, although there are many other spices on the renal diet. I just like her (its?) blends. I check labels copiously when I do the marketing and Bear does too. If there’s hidden sodium in foods, there’s not much I can do about it. However, checking labels and ignoring the salt shaker will help keep my kidneys safe from too much sodium. (Pssst: I also ignore whatever food you can buy at gas stations.)salt shakers

As DaVita tells us (http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/sodium-and-chronic-kidney-disease/e/5310)

Particularly damaging is sodium’s link to high blood pressure. High blood pressure can cause more damage to unhealthy kidneys. This damage further reduces kidney function, resulting in even more fluid and waste build up in the body.

Other sodium-related complications include the following:

  1. Edema: noticeable swelling in your legs, hands and face
  2. Heart failure: excess fluid in the bloodstream can overwork your heart making it enlarged and weak
  3. Shortness of breath: fluid can build up in the lungs, making it difficult to breatheUntil next week,

So lay off the salt, my friends.

recall centerBefore I leave you this week, I wanted to let you know that Dr. Mario Trucillo contacted me about his new company.  He is a Ph.D. with the American Recall Center (www. recallcenter.com) “a brand new medical information site aimed at bringing consumers the most up-to-date FDA information in easy to understand, plain language terms,” according to his e-mail.  I have been looking at the site and am pleased to announce I understood everything I read there… not often the case for me.  Why not take a look for yourself?  There are not that many plain language medical websites available. The more I look at this one, the more I like it.

Until next week,

Keep living your life!

Sometimes I’m Down

Sometimes I get down, even when good things are happening in my life.  For example, the podcast discussing SlowItDown will be available at www.renaldiethq.com/008  as of 6 a.m. this Wednesday.  That’s a good thing, right?  And Bear felt up to going to a movie yesterday.  That’s another good thing.  Yet, my heart is heavy.kidney-book-cover

That, of course, got me to wondering if this had anything to do with Chronic Kidney Disease.  And it turns out, it does.  While this sadness seems to always to be short term for me, it comes and goes for no apparent reason.

So I did what I do best.  I researched… and found more than I’d expected about this subject.

Way back in 2009, The National Kidney Foundation, Inc. published their findings after performing a study,

“Depression has long been associated with end stage kidney disease, but a new study published today in the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation, found that 20% of patients with early stage chronic kidney disease (CKD) also suffered from depression.”

You can read the rest of this short, but informative article at http://www.medicalnewstoday.com/releases/162766.php

sadLooking further back, I noticed that in 2006,  US National Library of Medicine, National Institutes of Health published a study on its PubMed.gov site calling for “…further well-designed, longitudinal, survival studies to clarify the relationship better between depression and the different stages of renal dysfunction.”  This is a bit more technical, but you can find it at http://www.ncbi.nlm.nih.gov/pubmed/16412828.

So there is a connection.  And I fell into that connection.  Which doesn’t mean that I’m clinically depressed or that I need treatment.  What it does mean is that I need to accept that I will have my down days now and again… and they will pass.

Somehow, it strikes me that everyone – CKD patient or not – has such days.

DaVita, the company that provides the trained educators who go into the community for SlowItDown, has this to say about depression and CKD:

“Depression can have many causes. In the case of someone who has just been diagnosed with chronic kidney disease there may be a lot of information to process about your physical health, which may lead to strong emotions about your life and how it may change. Similarly, once a person reaches end stage renal disease and begins dialysis, there are lifestyle adjustments to be made that could bring up feelings of despair. Many times these feelings are temporary; however, if you find you’re having difficulty don’t hesitate to get the help you need.”

They’ve got more information about this disease and depression on their website, particularly at http://www.davita.com/kidney-disease/overview/living-with-ckd/depression-and-chronic-kidney-disease/e/4917sad woman

It made sense to look at the other end and see if depression caused CKD, just as diabetes and/or high blood pressure may be both caused by CKD and may be the cause of CKD. The following is from a private mental health center in Scottsdale.  It’s especially interesting because of the size and duration of the study – 5,785 subjects under scrutiny for 10 years.  It is also specific to CKD patients, although it is from 2010.

“This particular study concluded that the patient population suffering from depression was more likely to develop kidney disease and a decline in kidney function. These studies are still in the very early stages and should not alarm anyone suffering from depression but should act as a motivator to encourage individuals to seek help for their depressive symptoms. On the other hand, it is known that depression is very common among patients with chronic kidney disease and studies have shown that if the depression is left untreated; the prognosis of the kidney diseases is much worse.”

I found the above at http://psychiatristscottsdale.com/depression-and-kidney-disease/

Fresenius Medical Care, which is actually a dialysis provider, (no, I don’t need dialysis; I just liked the comforting information on their site.) offers this distinction between common mood swings and depression:

“You may already know that people with chronic diseases are even more prone to depression …. Depression is a broad term that describes a set of mood disorders. Some are long-term and some are short-term. Certain types are milder, while others are very strong and very harmful. For our purposes, we will place them into two groups: Common mood swings and Ongoing depression

Everyone has common mood swings. They may look like depression, because you feel sad, discouraged, lack energy, may lose sleep, or doubt yourself over some event or relationship. These moods last from a few hours to a few days, and then subside. Clinically speaking, this is not depression, but a normal response to life changes.”

There’s more at http://www.ultracare-dialysis.com/KidneyDisease/CopingWithKidneyDisease/Depression.aspx#sthash.WnJm91YA.dpuf

It makes sense to list the symptoms of actual depression here so you can tell the difference between common mood swings and depression.Book Cover

Make The Connection, a veterans’ support site at http://maketheconnection.net/conditions/depression?utm_source=adcenter&utm_medium=cpc&utm_term=symptoms%20of%20major%20depressive%20disorder&utm_content=signs&utm_campaign=depression tells us:

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

You need to be careful.  If you suspect you have depression, make sure you seek professional help.  Not everyone gets to the point of feeling suicidal, but you want to make sure you don’t.

firworksI love it!  Just by writing about depression (or common mood swings in my case), I feel cleared of it.  Maybe a little knowledge is a dangerous thing, but I find it helps me cope.

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!

Control That Chronic Condition

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

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

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

Patients Can Do More to Control Chronic Conditions

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

By Laura Landro

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

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

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

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

Patients’ Role

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

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

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

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

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

Getting the Word Out                     Book Cover

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

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

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

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

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

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

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

Until next week,

Keep living your life!

SlowItDown More

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

SlowItDown

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

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

 SlowItDown                                          CKDed@cox.net                                                            602-509-4965

kidney-book-cover

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

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

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

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

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

The following is SlowItDown’s proposal:

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

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

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

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

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

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

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

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

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

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

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

I intend to have a banner week!  Join me?

Until next week,

Keep living your life!

Keep That Liver Lively

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

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

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

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

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

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

“Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver.”  That’s from the Mayo Clinic at: http://www.mayoclinic.com/health/hepatitis-b/DS00398.  I especially recommend their site because it is written in the English we all know and is easily understood.

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Stop It Before It Starts

Memorial Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That statement speaks for itself.

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

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

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

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

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

3 In some people, infection can cause death.”

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

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

Until next week,

Keep living your life!

Audrey Hepburn: “Nothing is impossible, the word itself says ‘I’m possible’!”

What an incredible weekend!  My youngest daughter, Abby Wegerski,(who I also have to thank for the title of today’s blog) and I attended a LandmarkEducation course called ‘Communication: The Access to Power.’  As  I’ve already written, my LandmarkEducation 275139_10010972_965497595_q(www.LandmarkEducation.com) project for the Self Expression and Leadership Program I’m enrolled in there is to develop self-sustained, free Chronic Kidney Disease information programs on the Native American  reservations out here in Arizona by the end of August.  Of course, I had no idea who was going to do the education when I got this bright idea.

As of this weekend’s course, the project is now to develop self-sustained, free Chronic Kidney Disease information programs globally within the next two years. And again, I had no idea who was going to be doing the educating.

But I do now.  In pursuing the local project, I’ve been calling individual nephrologists to see if they could donate time to educate.  They are extremely busy people. You can get that when you realize 1 out of every 9 people in the United States has Chronic Kidney Disease.  To date, only one – Dr. Jamal Atalia who happens to be another LandmarkEducation graduate – has offered to do so, even though it would have to be on a limited basis given the amount of time he has to devote to the people he’s already treating.

I decided to attend the fairly new Kidney Smart Classes offered by DaVita to see if that would lead to some referral for CKD educators for my project.  Yes, Davita IS a dialysis provider, but also invested in the humanity of staving off dialysis as long as possible.  On their homepage at www.DaVita.com  you can find education about both early and late stage CKD, and dialysis, as well as information on just what CKD is and help in locating a doctor.

This is how I described this company in What Is It And How Did I Get It? Early   Stage Chronic Kidney Disease:

“I’d been told about http://www.DaVita.com at my doctor’s office. This was a website from a private company that provided both the much dreaded dialysis and the much needed kidney education. Maybe that wouldn’t be so foreboding for me. I went to the website and clicked on every possible   thing I could click on. This was a little better, but it was a dot com – a for profit site. Maybe it was one that offered all this information so that when you needed dialysis, you would turn to them since they had been so helpful all along. And what, if anything, was wrong with that?”Book Cover

I have changed my opinion of DaVita drastically as of this afternoon.  Remember my reason for attending their new Kidney Smart Classes was to find an instructor or two who might be willing to volunteer his time to my project.  I started getting uncomfortable that there really wasn’t any integrity in attending the classes under false pretenses, although I was definitely going to attend.

In an effort to restore my integrity, I emailed the person I thought was going to be the instructor, Melanie Follett, the Kidney Smart Care Coordinator of DaVita Westside Division (The Phoenix Valley is usually divided into the east and west valley.) to see if she would be willing to teach some classes on the reservation.  I knew it was a long shot.

It turned out that she was the wrong person to approach although she was thrilled enough with my project to immediately email back saying she had forwarded my email to the right person – Annette Folmer who is the Certified Kidney Smart Educator-Care Coordinator of DaVita Westside Division.

Annette called me in record time.  What came out of this conversation is that she had the Chronic Kidney Disease educators available and ready to work.  When I told her about expanding the project so that it was global within the next two weeks, she offered to provide the educators nationally.  In addition, she requested that I contact DaVita’s Media (read press releases) person in regard to publicizing the project.

So Friday, I had no clue as to how to provide Chronic Kidney Disease educators for this project other than calling nephrologists (doctors who specialize in the kidneys and high blood pressure) one by one.  Today, Monday evening, there is an entire organization of Chronic Kidney Disease educators available and eager to disseminate this information for free on the reservations and in the rest of the nation.  All I can say is WOW!

 

I see the other aspect of the short term project is gaining access to the reservations.  Somehow, I’m just not worried about that after this amazing opportunity with the educators.  I intend to contact the Tribal Councils and am so very open to any suggestions you may have.  I urge you to email them to me at: myckdexperience@gmail.com.

But wait!  That’s not all.  Locally, people have been searching for live support groups and coming up empty.  You know you can find the online support groups in the blog role, but sometimes people want the live interaction.

It’s here, now, thanks to DaVita’s new Kidney Friends and Family Social Support Group.  This is the information from the flyer Annette just sent me:

Kidney Friends and Family Social Support Group

                                                                                                                                                                               Thursday, June 13 from 3:00pm-4:30pm

                                                                                                                                                                Arrowhead Lakes Dialysis 20325 N. 51st avenue # 184

                                                                                                                                                                                           Glendale, Arizona  85308

                                                                                                                                                                          June’s Education Topic: Medication Assistance

This group is open to kidney patients, along with their families, friends, and care partners at no cost. This is a positive, friendly, educational gathering that meets monthly.

                       

For more information please contact: Annette Folmer 480-208-1170

I am overwhelmed with gratitude at how quickly this project is falling into place.  I clearly remember how frightened I was when I was first diagnosed and thought it meant I was either immediately going to be tethered to a dialysis machine for the rest of my life or die immediately. That fear is simply no longer necessary in this world.  There are people determined to make certain no one feels that way… and I’m one of them.

Until next week,

Keep living your life!

Renal Foodie

It’s that time of year again. We have holidays of religious significance.  We get to see friends – old and new – that we haven’t seen for a while.  If we’re lucky parents, we get to see all the kids at one time. We even get to play with busy members of our families, such as when my step-daughter, Lara Garwood, asked me to go to our local Glendale Glitters event to see the lights.photo (2)

I’ve figured out how to stay within the renal diet guidelines at the parties we’re invited to and when we entertain here, but this time it’s different.  Our future son-in-law, Sean Rasbury, has taken over yet another family tradition: Christmas Eve dinner. The Arizona family alone has six members. Add assorted boyfriends and best friends and the number can go much higher.

I didn’t think it fair that he cook for everyone even if he is the one who has the day off, so I offered my help.  And he accepted, suggesting I cook a side dish.  Great!  Now I can get some veggies in!

When I went to the market for the ingredients I needed for this dish, I became aware of just how carefully I look at nutrition labels (the number of people politely waiting for me to move out of the way and then ahem-ing when I didn’t notice them may have had something to do with that) and wondered how many other people knew how to read them.

We are chronic kidney disease patients.  We do not have the luxury of tossing anything into our systems, yet we need to make the food we share with others tasty.  How to do that?

Leave it to the FDA to make this easier for us. When you go to: http://www.fda.gov/Food/ResourcesForYou/Consumers/NFLPM/ucm274593.htm you’ll find this chart.label

If you explore the page, you’ll find explanations for each designation on the chart.  It’s been color coded for your convenience, nice touch that.

Notice not all the electrolytes you need to watch are itemized, but at least you now know what you’re looking at when you see these labels. You can always use the downloadable booklet at http://www.aakp.org/brochures/nutrition-counter/nutrition-counter-english/ to see the electrolyte contents of each of the 300 foods listed in this booklet.  By the way, it’s been mentioned repeatedly that portion size is the key to the success of the kidney (renal) diet.

On the FDA site that has the chart, you’ll find explanations of serving sizes (Boy, do we ever need that!), links to specific recipes for low sodium diets, diabetic diets, pregnancy needs, heart friendly food, even a daily food tracker. In addition, there are downloadable shopping lists for healthy food. There’s also advice about how to pick out healthy food and including your children in planning the family meals.

Come to think of it, I seem to remember, my youngest daughter, Abby Wegerski’s teacher using this chart to re-enforce her math lessons in third grade. What a clever young woman she was. Or was she simply nutrition conscious?

Chicken-Dumpling-Stew-7DaVita has some holiday cooking tips of their own.

“Use kidney-friendly substitutions for your meals

Are you cooking a dish for a party and want to make sure it doesn’t pack on the pounds? If you cook, use healthy recipe substitutions for your kidney diet dishes. Listed are some ingredients a recipe may call for and the kidney-friendly substitute to use instead.”

Recipe calls for: Substitute with:
1 whole egg 2 egg whites or 1/4   cup egg substitute
Sour cream or cream   cheese Low fat sour cream   or low fat cream cheese
Sugar Splenda® or other   low calorie sweetener
Oil (for baking) Unsweetened   applesauce
Regular Jello® Sugar-free Jello® or   gelatin
Fruit packed in   syrup Fruit packed in   juice

You can find more of their holiday eating tips at: http://www.davita.com/education/article.cfm?educationMainFolder=diet-and-nutrition&category=special-occasions&articleTitle=five-holiday-eating-tips-for-people-with-kidney-disease&articleID=5371&cmp=dva1203_feat_art_five_holiday_tips

I do have to write something about the use of the sugar free products.  I wouldn’t use the substitutes, but would lower the amounts of sugar used in the recipe instead.  Sugar is 15 calories per tablespoon and is much healthier than any substance that has been altered in any way.

Until recently, I felt safe substituting unsweetened applesauce for sugar, but with the recent publicizing of genetically modified foods, I don’t trust the product anymore.  I would expect to see some central clearing house to list GMOs in the near future.

According to Wikipedia, “Genetically modified foods (GM foods, or biotech foods) are foods derived from genetically modified organisms (GMOs), specifically, genetically modified crops. GMOs have had specific changes introduced into their DNA by genetic engineering techniques.”  You can read more about this at: http://en.wikipedia.org/wiki/Genetically_modified_food

As I researched GMOs for this blog, it seemed to me articles were either written and posted by health proponents urging they be avoided or businesses promoting them.  Cravat: this is not something I researched in depth and this is simply my opinion.

So, are you now afraid to eat or cook this holiday season?  Don’t be.  Part of the enjoyment in life is sharing good meals with our loved ones, maybe even with those we want to become our loved ones.   Enjoy yours.th

On a more private note, I’ll be taking both a copy of the renal diet and my own copy of the AAKP’s nutritional content booklet with me (And, of course, my book which has an entire chapter on the renal diet) when we go to Florida next month. I know what I can eat here at home, but we’ll be in a different place with different people cooking for us and going out to restaurants I probably never heard of.  I am so eager for my brother and sister-in-law – Paul and Judy Peck – and my cousin Nina Peck and her partner, Sandra, to finally meet Bear after all these years of hearing about him.  And, icing on the cake (of course I’d use a foodie phrase in this blog), we get to see my junior high school buddy Joanne Dana Young-Melnick and her husband Norman again!!!!

I know tomorrow is Christmas and the day after is Kwaanza, but you can download the electronic version of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease immediately as a last minute gift for someone who has CKD, has a family member or friend who has it, is in the renal field, or is just plain curious.  It’s $9.95 at both Amazon.com and B&N.com. The Table

Until next week – and the last day of 2012,

Keep living your life!

Why The Book?

Some of you are already aware of the severe, non-renal, medical emergencies which have occurred in my family during the last two weeks.  For those of you who aren’t, one of the emergencies deals with diabetes-hypertension-possible cancer-mental health.  The other is purely mental health. Before I got the chance to try to calm my loved ones a little by reminding each of them that everything happens for a reason, whether or not we know the reason, they reminded me. And, as usual, that got me to thinking….

I have been asked repeatedly why I wrote What Is It And How Did I Get It? Early Stage Chronic. Kidney Disease. You’d expect that question on the radio health shows I guested on and it was there.  You’d also expect that question at the renal symposium, book signings and book talks I was involved with and, yes, it was there too. But when I most often hear the question is when I’m just chatting with friends, theirs friends, someone’s family – you know, ordinary, everyday people like you or me.

I’ve carefully explained each time I’m asked. Then I happened upon an article at DaVita that said the same thing with more authority than I could ever muster. I know we usually think of DaVita in association with End Stage Renal Disease, but they have a wonderfully comforting educational unit to their website as well. It’s Your Kidneys.com. I kept running into this article whenever I was researching. Since I do believe everything happens for a reason, whether or not we know the reason, I figured that I was meant to share it with you via the blog.

These are the parts of the article that hit home for me as far as why I wrote the book.

“It can be overwhelming to discover you have chronic kidney disease. Sometimes the amount of new information seems mind-boggling, but it’s important for you to remain calm. You may feel like you’re losing control, but in fact, you are the key to maintaining your health. You, above any doctor, nurse or dietitian, are the head of your kidney disease health care team. {Me: The book was written from my feeling overwhelmed and not wanting any other CKD patient to feel that way.}

The one person who has been an intimate part of your health care since day one is you. You know how you feel when you get the flu, you know how your body responds to medicine, you know if you’re allergic to something, and you’ve known yourself your whole life. Now that you are dealing with kidney disease, your job has become even more important. {Me again: To abdicate that job because you are overwhelmed is to give up control over your own life as I see it. You are wise as the owl, you know, especially when it comes to your own body.}

……….

If you feel confident being your own kidney disease health care advocate, be sure to cover all your questions and concerns by making a checklist. The best way to tackle issues is to keep a pad of paper handy and when you think of things you want to discuss with your doctor, jot them down. On your next doctor’s visit take out your pad and cross each item off after you address it. Your medical team will be impressed, and you will also get more out of your visit. {Me: Sorry for another interruption: I’m not at all sure it’s necessary to impress your medical team, but it is to get those answers. The book will help you formulate the questions.  That was my problem.  I wanted answers, but I didn’t know the questions to ask.}

If you have a pressing concern that won’t wait until your next doctor’s appointment, feel free to call your doctor, nurse practitioner or renal dietitian. You can also start researching your question on www.davita.com. DaVita offers a comprehensive and easy to use website that specializes in renal (kidney) education.

……….

It’s always a good idea to follow your kidney doctor’s advice. {Me: Last interruption, I promise – But ask WHY they’ve given you this advice and make sure you understand it rather than blindly doing as you’re told.  It’s quite an unfair burden on your doctor, too, when you do as you’re told without taking any responsibility.} They have gone to medical school, seen many patients and chosen a career to help people with kidney disease. While doctors are loaded with medical information, they are people first. Doctors may assume you understand everything when you don’t, they may not be aware of personal situations, and sometimes they don’t have all the answers. {Me: Bingo! There’s my reason in a nutshell – even though I promised no more interruptions.}

That’s why you need to be the head of your kidney disease health care team. The kidney doctors, nurses and renal dietitians are on your health care team, and you are a key player in that team. If something’s not right, you must consult your health care team to find a solution. If you’re unclear on anything regarding your treatment or kidney disease care, ask again. Your health is the priority of your team and when you succeed, so do they.”

It’s worth reading the entire article at: http://www.yourkidneys.com/kidney-education/Treatments/Heading-your-kidney-disease-health-care-team/2944. Take a look at the others they have to offer, too. Sure it’s scary to take responsibility for something you don’t understand, but you can do it and look at all the help you have.  Now that’s why I wrote the book.

I don’t exactly know why (Could it be the flier campaign headed by AKDHC’s Tamara Jansen? But how could that explain the England sales?), but sales are spiking as are the likes and comments on the Facebook page. Thank you all. If you want to order the book, but haven’t yet, here are the direct links to Amazon:  http://www.amazon.com/What-How-Did-Get-Chronic/dp/1457502143/ref=sr_1_1?ie=UTF8&qid=1321474094&sr=8-1  and     

Barnes and Noble: http://www.barnesandnoble.com/w/what-is-it-and-how-did-i-get-it-gail-rae/1103363592?ean=9781457502149&itm=1&usri=what2bis2bit2band2bhow2bdid2bi2bget2bit253f#CustomerReviews   where the book is available in both print and digital.  By the way, thank you for all the reviews I’ve discovered on both sites.

If you’d rather have a personalized, discounted (love that word) copy of the book, email me at: myckdexperience@gmail.com and that can be arranged.

Until next week,

Keep living your life!