Is it Blood Sugar or the Pancreas?

We all know diabetes raises your risk of developing Chronic Kidney Disease. But why? What’s the mechanism behind the fact? As far as I’m concerned, it’s time to find out.

Let’s start with diabetes. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), which in turn is part of The U.S. Department of Health and Human Services at https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes offers this explanation.

“Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Blood glucose is your main source of energy and comes from the food you eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes your body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in your blood and doesn’t reach your cells.

Over time, having too much glucose in your blood can cause health problems. Although diabetes has no cure, you can take steps to manage your diabetes and stay healthy.

Sometimes people call diabetes ‘a touch of sugar’ or ‘borderline diabetes.’”

Having just had a tumor removed from my pancreas, I’m well aware that it produces insulin as well as digestive enzymes. Without a pancreas to produce insulin, you would need insulin injections several times a day.

I got what diabetes is, but how it causes CKD was still not clear.

Well, not until I read the following from The American Diabetes Association at https://www.diabetes.org/diabetes/complications/kidney-disease-nephropathy.

“When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).”

Hmmm, now that we know what diabetes is and how it can cause CKD, maybe we need to look at ways to attempt to avoid diabetes.

  • Losing weight and keeping it off. Weight control is an important part of diabetes prevention. You may be able to prevent or delay diabetes by losing 5 to 10 percent of your current weight. For example, if you weigh 200 pounds, your goal would be to lose between 10 to 20 pounds. And once you lose the weight, it is important that you don’t gain it back.
  • Following a healthy eating plan. It is important to reduce the amount of calories you eat and drink each day, so you can lose weight and keep it off. To do that, your diet should include smaller portions and less fat and sugar. You should also eat a variety of foods from each food group, including plenty of whole grains, fruits, and vegetables. It’s also a good idea to limit red meat, and avoid processed meats.
  • Get regular exercise. Exercise has many health benefits, including helping you to lose weight and lower your blood sugar levels. These both lower your risk of type 2 diabetes. Try to get at least 30 minutes of physical activity 5 days a week. If you have not been active, talk with your health care professional to figure out which types of exercise are best for you. You can start slowly and work up to your goal.
  • Don’t smoke. Smoking can contribute to insulin resistance, which can lead to type 2 diabetes. If you already smoke, try to quit.
  • Talk to your health care provider to see whether there is anything else you can do to delay or to prevent type 2 diabetes. If you are at high risk, your provider may suggest that you take one of a few types of diabetes medicines.”

This is a list from NIH: National Institute of Diabetes and Digestive and Kidney Diseases posted on MedLinePlus at https://medlineplus.gov/howtopreventdiabetes.html. Notice it’s mentioned that this is for type 2 diabetes.

There are 11 different kinds of diabetes. Types 1 and 2 are the most common. WebMD at https://www.webmd.com/diabetes/guide/types-of-diabetes-mellitus#1 explains what type 1 and 2 are.

Type 1 diabetes is an autoimmune condition. It’s caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas doesn’t make insulin…. With Type 2 diabetes, the pancreas usually produces some insulin. But either the amount produced is not enough for the body’s needs, or the body’s cells are resistant to it. Insulin resistance, or lack of sensitivity to insulin, happens primarily in fat, liver, and muscle cells.”

This is all starting to make sense.

Until next week,

Keep living your life!

Zap!

To my surprise, hair started growing back in unexpected places after I finished chemotherapy. One place was my face. My face! And quite a bit of it, more than a bearded person would have. At least, that’s how it looked to me. I was surprised no one mentioned it to me, but supposed they were just glad I was still alive. I wasn’t worried. I’d just use laser hair removal… or would I? I do have Chronic Kidney Disease.

What did that mean as far as the laser hair removal? I remembered from when I’d had it done on the mustache area about seventeen years ago that it doesn’t work on white hair. No problem with this currently. This facial hair was growing in black and thick.

My goodness, you’d think I’d just be thankful to be alive at this point, too. But as is often attributed to Mr. Shakespeare, “Vanity, thy name is woman.” (Actually, he wrote “Frailty, thy name is woman,” but no one seems to remember that.) So, time to explore what CKD limits there are with laser hair removal.

Let’s start at the beginning with what it is. WebMD at https://www.webmd.com/beauty/laser-hair-removal#1  explained it this way:

“Laser hair removal is one of the most commonly done cosmetic procedures in the U.S. It beams highly concentrated light into hair follicles. Pigment in the follicles absorb the light. That destroys the hair.”

Just in case you need reminders,

“A hair follicle is a tunnel-shaped structure in the epidermis (outer layer) of the skin. Hair starts growing at the bottom of a hair follicle. The root of the hair is made up of protein cells and is nourished by blood from nearby blood vessels.

As more cells are created, the hair grows out of the skin and reaches the surface. Sebaceous glands near the hair follicles produce oil, which nourishes the hair and skin.”

Thank you to Healthline at https://www.healthline.com/health/hair-follicle#anatomy for that information. Notice I specified hair follicles since there are other kinds of follicles.

What else might we need defined. Oh yes, pigment. I used the definition of pigmentation instead since it was less convoluted to my way of thinking. The ‘ation’ part just means the action or process of whatever we’re discussing – in this case pigment. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=9681  tells us it’s:

“The coloring of the skin, hair, mucous membranes, and retina of the eye. Pigmentation is due to the deposition of the pigment melanin, which is produced by specialized cells called melanocytes.”

Now, the limitations with CKD – if any. In the last 17 years, I’ve learned that not only wouldn’t white hair respond to laser hair removal, but gray and blonde won’t either. It will also be less effective on red hair. It all has to do with your melanin.

Whoa! This was unexpected. I not only did NOT find any research warning about CKD and laser hair removal, but found some that endorsed it. For instance, The National Center for Biotechnology Information (NCBI), which is part of the U.S. National Library of Medicine, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pubmed/30005102.

“Laser hair reduction is a well-established modality for a wide range of medical indications. Laser hair reduction can be beneficial for hemodialysis patients who undergo repeated adhesive tape application and removal at their hemodialysis site during hemodialysis sessions. There is a paucity of published literature on efficacious laser hair removal treatments for hemodialysis patients. Herein, we present a case of a 50-year-old male (Fitzpatrick III) with end-stage renal disease on hemodialysis, who achieved successful laser hair reduction at his hemodialysis vascular access site with five sessions of a neodymium:yttrium-aluminium-garnet (Nd:YAG) laser (1064 nm) to improve his quality of life by reducing the hair burden at the adhesive tape site application. We recommend providing this safe and effective hair reduction treatment option for hemodialysis patients given the decreased quality of life associated with end stage renal disease and hemodialysis. J Drugs Dermatol. 2018;17(7):794-795.”

Let me translate the medicalese. This abstract means that using laser hair removal around the patient’s access site for dialysis made his life easier (and less painful) since the tape wasn’t sticking to his arm hair anymore. We all know how painful taking off adhesive anything can be if body hair is involved.

I have dug around in my computer for hours and hours. That’s all I found about laser hair removal and Chronic Kidney Disease. That’s the great thing about keeping an open mind; you find some unexpected information.

Here’s hoping you had a fun Halloween and didn’t eat too much candy, especially if you’re diabetic.

Talking about food, are you aware of Mrs. Dash’s seasonings for use instead of salt? It’s come to the point where I can taste even a teeny bit of salt. After almost a decade of not using salt, I’ve lost my taste for it… but Mrs. Dash? How does lemon pepper seasoning sound to you? Or garlic and herb? There are about 28 different flavors of seasoning. Go to the website at https://www.mrsdash.com/ to see for yourself. They also make marinades which was news to me. I usually choose the less spicy seasonings, but they have some zingers that you spicy food loving CKD patients will probably enjoy more.

Until next week,

Keep living your life!

 

Sodium Bicarbonate, Anyone?

I belong to a number of social media Chronic Kidney Disease support groups. Time and time again, I’ve seen questions about sodium bicarbonate use. I never quite understood the answers to members’ questions about this. It’s been years, folks. It’s time for me to get us some answers.

My first question was, “What is it used for in conjunction with CKD?” Renal & Urology News at https://www.renalandurologynews.com/home/conference-highlights/era-edta-congress/sodium-bicarbonate-for-metabolic-acidosis-slows-ckd-progression/ had a current response to this. Actually, it’s from last June 19th.

“Sodium bicarbonate treatment of metabolic acidosis in patients with chronic kidney disease (CKD) improves renal outcomes and survival, researchers reported at the 56th European Renal Association-European Dialysis and Transplant Association Congress in Budapest, Hungary.

In a prospective open-label study, patients with CKD and metabolic acidosis who took sodium bicarbonate (SB) tablets were less likely to experience a doubling of serum creatinine (the study’s primary end point), initiate renal replacement therapy (RRT), and death than those who received standard care (SC).”

It may be current but what does it mean? Let’s start with metabolic acidosis. Medline Plus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health at https://medlineplus.gov/ency/article/000335.htm explains it this way:

“Metabolic acidosis is a condition in which there is too much acid in the body fluids.”

But why is there “too much acid in the body fluid?”

I like the simply stated reason I found at Healthline (https://www.healthline.com/health/acidosis), the same site that deemed SlowItDownCKD among the Best Six Kidney Disease Blogs for 2016 and 2017.

“When your body fluids contain too much acid, it’s known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. Your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid accumulating in your body.”

In case you’ve forgotten, pH is the measure of how acid or alkaline your body is. So, it seems that when the kidneys (for one organ) don’t function well, you may end up with acidosis. Did you know the kidneys played a part in preventing metabolic acidosis? I didn’t.

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/263834.php in an attempt to find out if metabolic syndrome has any symptoms. By the way, AHA refers to the American Heart Association.

“According to the AHA, a doctor will often consider metabolic syndrome if a person has at least three of the following five symptoms:

  1. Central, visceral, abdominal obesity, specifically, a waist size of more than 40 inches in men and more than 35 inches in women
  2. Fasting blood glucose levels of 100 mg/dL or above
  3. Blood pressure of 130/85 mm/Hg or above
  4. Blood triglycerides levels of 150 mg/dL or higher
  5. High-density lipoprotein (HDL) cholesterol levels of 40 mg/dL or less for men and 50 mg/dL or less for women

Having three or more of these factors signifies a higher risk of cardiovascular diseases, such as heart attack or stroke, and type 2 diabetes.”

Well! Now we’re not just talking kidney (and lung) involvement, but possibly the heart and diabetes involvement. Who knew?

Of course, we want to prevent this, but how can we do that?

“You can’t always prevent metabolic acidosis, but there are things you can do to lessen the chance of it happening.

Drink plenty of water and non-alcoholic fluids. Your pee should be clear or pale yellow.

Limit alcohol. It can increase acid buildup. It can also dehydrate you.

Manage your diabetes, if you have it.

Follow directions when you take your medications.”

Thank you to WebMD at https://www.webmd.com/a-to-z-guides/what-is-metabolic-acidosis#2  for the above information.

Let’s say – hypothetically, of course – that you were one of the unlucky CKD patients to develop metabolic acidosis. How could you treat it?

I went directly to the National Kidney Foundation at https://www.kidney.org/atoz/content/metabolic-acidosis to find out. This is what they had to say:

“We all need bicarbonate (a form of carbon dioxide) in our blood. Low bicarbonate levels in the blood are a sign of metabolic acidosis.  It is a base, the opposite of acid, and can balance acid. It keeps our blood from becoming too acidic. Healthy kidneys help keep your bicarbonate levels in balance.  Low bicarbonate levels (less than 22 mmol/l) can also cause your kidney disease to get worse.   A small group of studies have shown that treatment with sodium bicarbonate or sodium citrate pills can help keep kidney disease from getting worse. However, you should not take sodium bicarbonate or sodium citrate pills unless your healthcare provider recommends it.”

I’m becoming a wee bit nervous now and I’d like to know when metabolic acidosis should start being treated if you, as a CKD (CKF) patient do develop it. Biomed at http://www.biomed.cas.cz/physiolres/pdf/prepress/1128.pdf reassured me a bit.

“Acid–base disorder is commonly observed in the course of CKF. Metabolic acidosis is noted in a majority of patients when GFR decreases to less than 20% to 25% of normal. The degree of acidosis approximately correlates with the severity of CKF and usually is more severe at a lower GFR…. Acidosis resulting from advanced renal insufficiency is called uremic acidosis. The level of GFR at which uremic acidosis develops varies depending on a multiplicity of factors. Endogenous acid production is an important factor, which in turn depends on the diet. Ingestion of vegetables and fruits results in net production of alkali, and therefore increased ingestion of these foods will tend to delay the appearance of metabolic acidosis in chronic renal failure. Diuretic therapy and hypokalemia, which tend to stimulate ammonia production, may delay the development of acidosis. The etiology of the renal disease also plays a role. In predominantly tubulointerstitial renal diseases, acidosis tends to develop earlier in the course of renal insufficiency than in predominantly glomerular diseases. In general, metabolic acidosis is rare when the GFR is greater than 25–20 ml/min (Oh et al. 2004).”

At least I understand why the sodium bicarbonate and I realize it’s not for me… yet.

Until next week,

Keep living your life!

National Kidney Month, 2019

Anyone remember LOL? It’s older internet shorthand for Laughing Out Loud. That’s what I’m doing right now. Why? Because, after all these years of blogging, I’ve just realized that I compose my opening paragraph as I’m waking up. Still in bed, mind you. Still half asleep. Isn’t the brain wonderful?

This is my half asleep composition for this morning: March is National Kidney Month. That’s not to be confused with March 14th, which is World Kidney Day. So, today, we address the nation. Next week, the world.

As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month.

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing (sic) with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.” That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 30 million Americans who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed. During National Kidney Month in March, and in honor of World Kidney Day on March 14, the NKF offers the following health activities to promote awareness of kidneys, risk factors and kidney disease:

  • Free Screenings: On World Kidney Day and throughout the Month of March, NKF is offering free screenings to those most at risk for kidney disease – anyone with diabetes, high blood pressure or a family history of kidney failure. Locations and information can be found on the calendar on our website.
  • ‘Are You at Risk’ Kidney Quiz: Early detection can make a difference in preventing kidney disease so it’s important to know if you’re at risk. Take the online kidney quiz!
  • Live Twitter Chat with Dr. Joseph Vassalotti: The National Kidney Foundation’s Chief Medical Officer, Dr. Joseph Vassalotti, will be hosting an interactive kidney Q&A on World Kidney Day, Thursday, March 14, from 12-2 pm ET. Ask your questions at www.twitter.com/nkf using the hash-tag #WorldKidneyDayNKF.”

Wow, so much going on. This is also the month of kidney walks, like the one my daughter Nima participated in on the East Coast in my honor, or the one for which I organized a team several years ago. Actually, it’s the month specifically for anything and everything that will raise awareness of kidney disease. I’ve mentioned that I contributed a chapter to the book 1in9, which is about kidney disease. You’re right. The book launch is this month, March 6th to be specific.

The American Kidney Fund at http://www.kidneyfund.org/take-the-pledge/ is also taking part in National Kidney Month. They have a form to fill out to take a pledge to fight kidney disease.  I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease. I wanted to share this quote from the AKF with you, both as a CKD awareness advocate and a woman:

“‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’”

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

“March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.”

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

“Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.”

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s title assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook,Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease.

Until next week,

Keep living your life!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

Fiber comes in two varieties, both beneficial to health:

  • Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.
  • Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

  • Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
  • Diabetes
  • Heart Disease
  • Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“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”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries 1 cup 8.0
Pear 1 medium 5.5
Apple, with skin 1 medium 4.5
Banana 1 medium 3.0
Orange 1 medium 3.0
Strawberries 1 cup 3.0

 

Vegetables Serving size Total fiber (grams)*
Green peas, boiled 1 cup 9.0
Broccoli, boiled 1 cup chopped 5.0
Turnip greens, boiled 1 cup 5.0
Brussels sprouts, boiled 1 cup 4.0
Potato, with skin, baked 1 medium 4.0
Sweet corn, boiled 1 cup 3.5
Cauliflower, raw 1 cup chopped 2.0
Carrot, raw 1 medium 1.5

 

Grains Serving size Total fiber (grams)*
Spaghetti, whole-wheat, cooked 1 cup 6.0
Barley, pearled, cooked 1 cup 6.0
Bran flakes 3/4 cup 5.5
Quinoa, cooked 1 cup 5.0
Oat bran muffin 1 medium 5.0
Oatmeal, instant, cooked 1 cup 5.0
Popcorn, air-popped 3 cups 3.5
Brown rice, cooked 1 cup 3.5
Bread, whole-wheat 1 slice 2.0
Bread, rye 1 slice 2.0

 

Legumes, nuts and seeds Serving size Total fiber (grams)*
Split peas, boiled 1 cup 16.0
Lentils, boiled 1 cup 15.5
Black beans, boiled 1 cup 15.0
Baked beans, canned 1 cup 10.0
Chia seeds 1 ounce 10.0
Almonds 1 ounce (23 nuts) 3.5
Pistachios 1 ounce (49 nuts) 3.0
Sunflower kernels 1 ounce 3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!

The Reluctant Donor

I’m pretty sure I’ve mentioned the exceedingly personable folks I met at the kidney disease think tank and then the AAKP National Patient Meeting earlier this year. Actually, you’ve already heard from one from them. This past July, Cindy Guentert-Baldo guest blogged about being a PKD patient. Today’s guest blog by Suzanne F. Ruff looks at the other side of same kidney disease. Ms. Ruff is no stranger to spreading awareness of kidney disease as you can see by her credentials:

author of The Reluctant Donor

Freelance writer for The Charlotte Observer

Executive Board of Directors American Association of Kidney Patients (AAKP)

Living Donor Council of The National Kidney Foundation (NKF)

Published in Chicken Soup for the Soul: Grieving & Recovery & Say Hello to A Better Body

Before you start reading Suzanne’s guest blog, I feel it only fair to warn you it left me in tears.

Why am I called The Reluctant Donor?  A simple answer is because I cried and whined all the way into the operating room to donate a kidney to my sister.  But it’s really not simple.  It’s complicated.

I really didn’t like my sister.  Okay, okay, I know.  If you have a sibling, you probably know what I’m talking about . . . siblings can drive you crazy.  If you don’t have a sibling, well, it’s complicated.  That’s part of the reason I titled my book, The Reluctant Donor, but not quite the whole reason.

On my journey to become a living kidney donor to a sister I didn’t like, I learned a lot of things.  Probably the most important thing is that although I may not have liked my sister, I discovered how much I love her. When I didn’t like her, it was because she was crabby grouchy and scared.  I learned something from that, too.  My sister was crabby and grouchy because she was ill…very, very ill.  That’s what happens when you don’t feel well, when your kidneys fail, and when you’re scared, terrified and afraid: you are not yourself.

I also learned denial is a powerful thing.  My sister was in denial.  Kidney disease does that to you; my sister and I should know.  We were born into a family chockful of people with kidney disease. Polycystic kidney disease or ADPKD (Autosomal Dominant Polycystic Kidney Disease) to be exact. This is a hereditary disease that causes cysts to grow around both kidneys causing the kidneys to fail.  If one of your parents carries the gene (our mother did), you have a 50% chance of inheriting the disease.   My sister, along with my other sister, inherited that gene from our mother.  Our mother, along with Mom’s two brothers and two sisters, inherited that gene from their mother.

Yes, sirreee, we were chockful of kidney disease. Over twenty-three family members now have or had the disease. We’ve had ten deaths from kidney disease, including our mother.

I did not inherit the gene that causes the disease.  Many people ask me if I feel guilty, sort of like survivor’s guilt, because my sisters have the disease and I don’t. I don’t feel guilty.  A person has no power over what genes they inherit.  But, I do feel a tremendous responsibility to do what I can to eradicate the disease that has ravaged my family.  So, I wrote my book. 

There is no cure for PKD.  Growing up I learned I was named after my grandmother who died of polycystic kidney disease before I was born.  When her kidneys failed, the doctors told her there was nothing the doctors could do for her. Mom described my grandmother’s death: Mom, a teenager then, her father, her brothers and sisters were gathered around my grandmother’s hospital bed, when my grandmother sat straight up and said, “Here I am, Lord!” and died.

The disease then hit five of my grandmother’s six children, including my mother. Through their suffering and deaths, I have learned courage and faith.  One of my aunts diagnosed with PKD in the 1960’s was one of the first to be able to try the new-fangled machine called dialysis. But, alas! There were not enough dialysis machines!!!!!  My aunt was a Roman Catholic nun.  She offered to give up her spot on the waiting list and died a few months later. She was 45 years old.

Presently, my three cousins, all brothers, suffer from polycystic kidney disease.  Their eldest brother, John, passed away from polycystic kidney disease (PKD) in 1996. Two of the three brothers are on dialysis and the other brother will need dialysis soon.    Their sister has offered to be a living donor to one of them, but each of them insists the other brother accept her kidney. A stalemate … as the disease progresses.

I have other stories about my magnificent family, but this blog is near its end.  You might even say none of this explains why I cried, kicked and screamed my way into the operating room to donate one of my kidneys to my sister.

Plain and simple: I was afraid.  I don’t like hospitals.  I hate them.  Growing up, the people I loved most died in hospitals.  I don’t like needles. I don’t like blood.   I was afraid I would die, afraid the surgery wouldn’t be a success, afraid my life would change because I donated.  I was always afraid of polycystic kidney disease as one by one, people I loved suffered and died.

Something happened to me, though, when my sister collapsed in kidney failure.  My faith kicked in and I stepped up.  We are blessed.  The surgery was a success. My sister is now a grandmother. Life is so precious!

Having gained both another son-in-law and my first grandchild this year, I can only agree with Suzanne… and life was precious for me before. I’m reading her book now and enjoying it. Should you decide to read Suzanne’s book (and any and all of mine), be sure to leave a review. Those are what get our books recognized… and in Suzanne and my cases, spreads awareness of kidney disease.

Until next week,

Keep living your life!