And Then There Are Bhutan and India

There’s a fellow on Facebook whose name caught my eye. A little background first. My older daughter is called.Nima, That’s a Tibetan name which means ‘the sun.’ Since my children’s father was studying Tibetan psychology at the time, we were going to name our second child Tashi. That means ‘good fortune.’

After some heart searching talks, we decided this child would be not only our second, but our last. It is a tradition in my Jewish religion to name a child after honored, deceased members of the family. There were still beloved people to be honored, so Tashi was voted out. Yet, I have always liked the name.

Now that you know why I like the name, you’re probably asking yourself what this has to do with Bhutan. That’s where the follow on Facebook whose name caught my eye lives and – surprise – he is a Chronic Kidney Disease Awareness Advocate. We don’t have regular contact with each other, but I do read the posts on his Facebook Tashi Namgay Kidney page.

Now I’ll bet you want to know just where Bhutan is. As you can see from the map, it’s in Southeast Asia and is surrounded by India except for the northern border which is shared by China.
This small country has an active CKD community. The Bhutan Kidney Foundation was Tashi’s baby. He was persistent about instituting this foundation in Bhutan and finally succeeded in 2012.

This is from their website at http://www.bhutankidneyfoundation.org/

OBJECTIVES:
• To promote overall well-being of kidney patients in Bhutan.
• To raise awareness among general public on kidney related diseases in coordination with relevant agencies and stakeholders.
• To ensure all kidney patients have easy access to affordable care and services.
• To raise funds and facilitate underprivileged and needy patients to undergo transplant even though RGoB currently bears the entire medical costs besides other financial assistance.
• To support establishment of renal and other organ transplantation programmes in Bhutan in near future.
• To encourage, promote and facilitate legal organ donations.
• To provide necessary support and services to other organ-related patients as well.
• To explore international funds amongst health supporting organizations around the globe for the purposes of carrying out research on causes of rampant kidney failures in Bhutan so that in near future, the disease may be contained.

They also have a Facebook page with the same name. As a matter of fact, I mentioned that page just recently in the June 12th blog, although I didn’t realize at that time that Tashi was the prime mover behind the Bhutan Kidney Foundation.

According to World Life Expectancy at http://www.worldlifeexpectancy.com/country-health-profile/bhutan, Bhutan ranks 46th in the world for deaths due to kidney disease. That equates to a little less than 19 deaths per 100,000 people as of 2014. Bhutan’s population was only approximately 765,000 people at that time.With the rise in CKD in Bhutan, Tashi’s work to education the citizens about the disease is much needed.

What about India? Does they also promote CKD Awareness? Indeed, so much so that Subash Singh invited me to post the blog on his Mani Trust Facebook page. Mani Trust deals with all kinds of help for the people living in India, not just CKD. There are food initiatives, clean-ups, any kind of humanitarian undertaking they can think of.

I, of course, am only going to deal with CKD in India. According to MedIndia.net – one of the first health websites in India and one I’ve used before – at http://www.medindia.net/health_statistics/health_facts/kidney-facts.htm,

“There are approximately 7.85 million people suffering from chronic kidney failure in India…. In India 90% patients who suffer from kidney disease are not able to afford the cost of treatment.”

Reminder, it was an Indian doctor who was responsible for this blog’s existence. When What Is It and How Did I Get It? Early Stage Chronic Kidney was published, he contacted me wanting the information for his patients who were so poor they could rarely afford the bus fare to the clinic. The book became the first blog posts.

Now I wish now that I had saved his email and his name. But who knew six years ago that SlowItDownCKD would be winning kidney health blog awards and be the source of six more CKD books?

Back to CKD activity in India. Oh my! India ranks a whopping 24th in the world for kidney related deaths. That was almost 22 people per 100,000 in 2014. At that time, India’s population was 1,271,702,542. For comparison, the population of the U.S. for the same year was 325,120,000.

This is from BioMedCentral at http://bmcnephrol.biomedcentral.com/articles/10.1186/1471-2369-13-10. Due to space constraints, I have not reproduced the entire chart. By the way,  BioMedCentral is the home to BMC Nephrology, which is an open access journal.

The number of cases reported from each zone (me here: of India) in the different years

Year
2006            13,231
2007            11,196
2008            11,644
2009            10,188
2010*            6,388

*Till Sep 30, 2010

Apparently, most of the CKD in India is caused by diabetic nephropathy. I turned to my old favorite WebMD for a definition. This one is at http://www.webmd.com/diabetes/tc/diabetic-nephropathy-topic-overview#1.

Nephropathy means kidney disease or damage. Diabetic nephropathy is damage to your kidneys caused by diabetes. In severe cases it can lead to kidney failure. But not everyone with diabetes has kidney damage.

Healthline, a well-respected health information site, at http://www.healthline.com/health/type-2-diabetes/diabetic-neuropathy#types3 tells us:

Diabetic neuropathy is caused by high blood sugar levels sustained over a long period of time. Other factors can lead to nerve damage, such as:

• damage to the blood vessels, such as damage done by high cholesterol levels
• mechanical injury, such as injuries caused by carpal tunnel syndrome
• lifestyle factors, such as smoking or alcohol use

Low levels of vitamin B-12 can also lead to neuropathy. Metformin (Glucophage), a common medicine used to manage the symptoms of diabetes, can cause lower levels of vitamin B-12.

So much to digest, umm, I mean understand.

It seems to me that while CKD is burgeoning world wide (although as we see in the chart, come countries are lowering the incidence of the disease), but so is CKD awareness… and that gives me hope. I haven’t written about them here, but the European countries each have their own kidney organizations. I remember writing about some of the Caribbean and African countries. If there’s a particular country that interests you which I haven’t covered, leave me a comment.

Until next week,
Keep living your life!

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The American Kidney Fund Blog

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

Slowing Down CKD—It Can Be Done

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

No doctor had ever mentioned CKD before.

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

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

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

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

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

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

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

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

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

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

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

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

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

Until next week,

Keep living your life!

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

Not Exactly

Before we start, I want to tell you I’ll be the guest on Online with Andrea tonight at http://www.blogtalkradio.com/onlinewith andrea/2015/03/23/chronic-kidney-disease in honor of National Kidney Month 7:30 EST.  This is a good opportunity to share aNational Kidney Monthwareness of our disease.

Kidney Book CoverYou may have friends, family, co-workers who are still not really sure what CKD is or why it’s important to be tested.  Here’s your chance to have someone else explain it for a change. I haven’t done a radio show in quite a while, but the timing was just too good to pass up this time around.

Now, what’s not exactly?  I’ve been thinking that knowing the definition of something is not the same as knowing whatever it is. {My English teacher senses are tingling right now.}  Specifically, I was thinking about pre-diabetes. We know that ‘pre’ is a prefix – talk about using a word, or in this case a part of a word, to define itself –a group of letters added before a word that changes its meaning. To further complicate this simple explanation, the prefix ‘pre’ means before. So pre-diabetes means before diabetes.

Wait a minute.  Aren’t we all pre-diabetes, or any other condition for that matter, before we actually develop it?  Well, yes.  Something is off here.  Ah, a synonym {The English teachers arises!  That’s a word that means the same as the word you can’t think of.  No, that’s a writer’s definition.  An English teacher will tell you they are words with the same meaning but different spellings and pronunciations.)

The synonym for pre-diabetes is borderline diabetes. That makes sense.  You’re just about there, but not quite.  That’s what my A1C results have blood glucosebeen saying for years.  Reminder: the A1C is the blood test that measures how well your body has been using your blood glucose for the past several months before you take the test.  Mine wasn’t doing so well.

We are CKD patients.  We know what diabetes can do to your kidneys and that diabetes is the number one cause of CKD. In case you’ve forgotten, this is from The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

With diabetes, the small blood vessels in the body are injured. When the blood vessels in the kidneys are injured, your kidneys cannot clean your blood properly. Your body will retain more water and salt than it should, which can result in weight gain and ankle swelling. You may have protein in your urine. Also, waste materials will build up in your blood.

bladderDiabetes also may cause damage to nerves in your body. This can cause difficulty in emptying your bladder. The pressure resulting from your full bladder can back up and injure the kidneys. Also, if urine remains in your bladder for a long time, you can develop an infection from the rapid growth of bacteria in urine that has a high sugar level.

I’ve repeated this from last week’s blog because you need to understand diabetes so you can understand the importance of not letting your body develop it.

Now borderline diabetes. While WebMD calls that the former name for pre-diabetes, it also talks about insulin resistance at http://www.webmd.com/diabetes/guide/insulin-resistance-syndromeinsulin resistance Insulin is a hormone that controls your blood sugar levels. If you have insulin resistance, your body doesn’t respond as well as it should to the insulin it makes. That leaves your blood sugar levels higher than they should be. As a result, your pancreas has to make more insulin to manage your blood sugar.

What I’ve discovered is that sometimes even that extra insulin produced by the pancreas isn’t enough. The first line of treatment for borderline or pre-diabetes according to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 is

  • Eating healthy foods. Choose foods low in fat and calories and high in fiber. Focus on fruits, vegetables and whole grains. Strive for variety to help you achieve your goals without compromising taste or nutrition. This type of diet may be referred to as a Mediterranean-style diet.
  • Getting more physical activity. Aim for 30 to 60 minutes of moderate physical activity most days of the week. Try not to let more than two blues dancersdays go by without some exercise. Take a brisk daily walk. Ride your bike. Swim laps. If you can’t fit in a long workout, break it up into smaller sessions spread throughout the day. The American Diabetes Association also recommends resistance training, such as weightlifting, twice a week.
  • 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.

Book CoverPart 2

And then there are the folks like me. Despite a hard won nine pound weight loss, daily physical activity, and a renal healthy diet (Hey, I have Chronic Kidney Disease and have had it for the last seven years!), my body still is insulin resistant. That means medication.

I started out on 500 mg. Metformin daily.  This is controversial for kidney patients since there is a school of thought saying it can harm the kidneys.  That meant lots of discussion with my nephrologist, although my primary care doctor prescribed the drug.  The nephrologist felt that 500 mg. once a day would not harm the kidneys I’ve kept at stage 3 CKD since my diagnose.Metformin

What we hadn’t figured on was the stomach upset, nausea, and lightheadedness I’d feel.  I was at the point of immediately locating the waste paper baskets in any room I entered – just in case, you understand – when my PCP and I decided to halve the dose.  Things are still better as far as blood glucose and sort of getting there as far as the side effects.

This is all new to me.  As with anything else new, it’s foreign right now. But it’s important to me to protect that kidney function so I know I’ll figure out how to deal with the insulin resistance more effectively and soon.  Yet, I’m awfully thankful I also have nutritional counseling once a week for at least two months.

Until next week,Digital Cover Part 1

Keep living your life!