Feed Me

Over the years, I’ve seen advertisements for food preparation services. You know the ones that cook your meals and deliver them weekly. I would approach the people offering the service to see what they could do with the renal diet. That was a deal killer right there.

All right, I figured. Maybe what I should be doing is finding a chef who is willing to work with kidney patients rather than ask existing food preparation services to accommodate just me. I even had one chef who agreed that this is a valuable service and something she wanted to do. I was excited. Then she simply stopped emailing and answering calls. That was a couple of years ago.

I sort of gave up… until I ran into an advertisement for Clarence’s food service. I figured it was worth it to try again and called him. It was.

I explained to Clarence that I don’t permit advertising on my blog, but I would like other Chronic Kidney Disease patients to see how they can make use of food preparation services such as his. He was kind enough to write this guest blog for us. I’m hoping that this inspires you to approach a chef in your area to ask him/her if he/she is willing to provide such a service. Of course, not all of us want to have someone else prepare our meals or want to spend the money to do so, so this is a blog for that portion of readers who do.

Meal Planning for Those with Kidney Disease.
Clarence Ferguson, RTSM, CMTA, NT

Understanding your kidney disease, or renal disease, is the first step in taking control of your health. While I am not a doctor, I have aligned myself with those whose specialize in CKD so that I can adjust meals accordingly. When you have kidney disease, your kidneys are no longer able to remove waste effectively from your body or to balance your fluids. The buildup of wastes can change the chemistry of your body causing some symptoms that you can feel, and others that you don’t.

With kidney diseases, the first symptoms you may have are ones that you won’t feel but that will show up in tests that your doctor orders. Common problems are high blood pressure, anemia and weakening bones. It is important to find a kidney doctor (also called a nephrologist). And once you have your doctor’s recommendation that’s where we come in and prepare your meal according to his or her recommendations.

Okay Clarence, we know that but how do we navigate healthy eating?

Here are some suggestions for you and what I prepare for clients who struggle with CKD.

Make sure these snacks are readily available:
1. Fruit: apples, grapes, tangerines or strawberries; dried cranberries or blueberries; or packaged fruit cups with diced     peaches, pears, pineapple, mandarin oranges or mixed fruit. Make sure they are organic.
2. Low- or no-sodium microwave popcorn.
3. Low-sodium crackers, pita chips or unsalted pretzels.
4. Pouches of tuna or chicken and a side of Vegainse (a dairy free option for mayonnaise).
5. Kidney-friendly nutrition bars or liquid supplements, such as the ones from ID life, since they meet these guidelines.

What we do at Fit Body Foods
1. Compare brands. Sodium and potassium levels can vary significantly from one brand to another.
2. Look for low-sodium labels on packaging. Stock up on the lowest sodium broths, stocks and condiments.
3. Choose fresh vegetables, or frozen or canned veggies with no added salt or sodium.
4. Use only 1/4 as much of the tomato sauce and canned tomatoes that a recipe calls for to limit potassium and sodium.
5. Don’t use canned fish or chicken with added salt. All fish is fresh, so we can control the sodium levels by rinsing to reduce the sodium. Try to limit use of canned goods in general.
6. Avoid baking and pancake mixes that have salt and baking powder added. Instead, make a kidney-friendly recipe from scratch.
7. Use sweet pickles instead of dill pickles and check for added salt.
8. Check cold and instant hot cereals for sodium amounts. Although oatmeal contains more phosphorus than some cereals, it may be okay one to two times a week if phosphorus is well-controlled.
9. Check the ingredients in vinegar. Some vinegars, such as seasoned rice vinegar, contain added salt and sugar.
10. Avoid store-bought sauces and gravies that have mystery ingredients in them. Make our own instead from real-food ingredients.
11. Use homemade soup recipes, such as Rotisserie Chicken Noodle Soup, instead of pre-made or canned soups. Some soups contain more than 800 mg sodium per serving.
12. Low – and reduced – sodium broth is great for use in cooking. We save the homemade broth from stewed or boiled chicken or beef.
13. Don’t trade sodium for potassium. Some products replace salt with potassium chloride.
14. Limit nuts, seeds and chocolate as they are high in potassium and phosphorus.

We prepare food weekly and deliver to our clients on Sundays. We take the worry out of meal prep, our meals start at $7.99 a meal, and we can accommodate most palates. We can be reached for orders at: info@coachclarence.com.

Below is a sample recipe:
Cucumber-Carrot Salad
Diet types: CKD non-dialysis, Dialysis, Diabetes
Portions: 4
Serving size: 1/2 cup
Ingredients:
1/4 cup unseasoned rice vinegar
1 teaspoon sugar
1/2 teaspoon olive oil
1/8 teaspoon black pepper
1/2 cucumber
1 cup carrots
2 tablespoons green onion
2 tablespoons red bell pepper
1/2 teaspoon Mrs. Dash® Italian Medley seasoning blend

Notice there is nothing new here. We all know this information. What is appealing is having someone else, someone who understands our diet limitations, buy the food and prepare it for our meals. I explained to Clarence that our food needs as far as electrolytes change with each blood test and he agreed that it’s important to eat according to your numbers. That’s something he’s very willing to pay attention to. Should this interest you, why not approach a professional in your area to see if they can also provide such a service?Big news! SlowItDownCKD 2011 is now available on Amazon.com in both print and digital (and needs reviews: hint). SlowItDownCKD 2012 will not be far behind. These are the first and second parts of the reformatted, larger print, more comprehensively indexed The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, (available only until SlowItDownCKD 2012 is published).

Until next week,

Keep living your life!

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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!

Singapore Knows CKD

I have an online friend, Leong Seng Chen, who lives in Singapore and is highly active in the Chronic Kidney Disease Awareness community there. Last week, I asked if any readers would like to see certain organizations that weren’t already there added to the blogroll – the list of CKD organizations to the right of the blog itself. He mentioned two but one was a Facebook page and the other was for dialysis. I usually write a blog about current Facebook pages once a year and don’t usually write about dialysis.

His request, which I couldn’t honor, got me to thinking about what is going on for CKD patients in Singapore. So, I started poking around.

The Clinical Journal of the American Society of Nephrology (of all places!) looked into this in 2008, a decade ago, and published the following at http://cjasn.asnjournals.org/content/3/2/610.full.

The NKF Singapore Prevention Program presents a unique approach that incorporates a comprehensive multilevel strategy to address chronic kidney disease …. What makes the NKF Singapore program different is that it incorporated a public health approach to preventing ESRD by using primary, secondary, and tertiary prevention initiatives that can intervene at several stages in the progression of kidney disease. These include 1) surveillance of the general population for urinary abnormalities, 2) screening of the general population for clinical conditions that increase the risk of chronic kidney disease, such as diabetes mellitus and hypertension, 3) the institution of a disease management program to facilitate the management of patients with diabetes and hypertension, which are among the leading causes of ESRD in the country, and to a limited extent, 4) tracking of the individuals who participate in the screening program. Thus, both population-based and high-risk prevention strategies were incorporated into the Singapore Prevention Program.

If you think about it for a moment, this is an astoundingly comprehensive approach to awareness, prevention, and treatment.

I was intrigued and looked further. This chart is from Health Exchange/Singapore at https://www.healthxchange.sg/digestive-system/kidney/chronic-kidney-disease-singapore-stats-prevention-tips. As you can see, it includes statistics up to (and including) 2012. That’s still half a decade ago.

I had naively assumed the National Kidney Foundation was an American organization. Here, in the United States, it is. There, in Singapore, it’s a Singaporean organization.

In Singapore, CKD awareness is not just an adult undertaking. There is a bus provided by the NKF that goes to schools, among other places, to educate young children about how to prevent and recognize the disease, as well as what the kidneys do. Somehow, I found that charming and necessary simultaneously. Why don’t we do that in the United States, I wonder. Take a look at https://www.nkfs.org/kidney-health-education-bus/ to see for yourself what I’m talking about here.

The National Registry of Disease Office was founded by the Ministry of Health in 2001. While the most current statistics I could find, they only record Chronic Kidney Failure, or End Stage Chronic Renal Disease (ESRD). According to their website at https://www.nrdo.gov.sg/about-us,

We are responsible for:
● collecting the data and maintaining the registry on reportable health conditions and diseases that have been diagnosed and treated in Singapore
● publishing reports on these health conditions and diseases
● providing information to support national public health policies, healthcare services and programmes

Meanwhile, the statistics from Global Disease Burden Healthgrove are only four years old and give us a better understanding of what’s happening in Singapore as far as CKD. You can choose different filters at http://global-disease-burden.healthgrove.com/l/67148/Chronic-Kidney-Disease-in-Singapore

As they phrase it: These risk factors contributed to, and were thought to be responsible for, an estimated 100% of the total deaths caused by chronic kidney disease in Singapore during 2013.

I hadn’t been aware of just how involved with CKD Singapore is until Leong started telling me. Now, I’m astounded to learn that this country is number four in deaths from our disease.

Just as in the United States, Singapore posts lists of nephrologists, herbal aids, hospital studies, and even medical tourism sites. While I may or may not approve of such listings, they have opened my eyes to the fact that Singapore plays with the big boys when it comes to CKD. Come to think of it, they may even be more developed when it comes to educating the public. Remember those education buses?

Many thanks to Leong Seng Chen, my CKD friend on Facebook this past year and- hopefully – many more years to come.

On another topic entirely, winning a place in Healthline’s Top Six Kidney Disease Blogs two years in a row spurred me on to finally rework both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 into something more manageable: each book will be divided into two books with their own indexes and renamed SlowItDownCKD and the year. Right now I’m working on SlowItDownCKD 2011. Hey, let’s hold the cheering down there.

In addition, all the Kindle versions of each of the SlowItDownCKD books are now $2.99 in order make them more accessible to more people. I’m working on lowering the price for the print books too, but that seems to be more complicated…or maybe I just don’t understand the process yet. I would stick to Amazon.com since B & N.com simply never responds to my attempts to lower the price on any of my books.

By the way, have you heard about this from AAKP? (You can read more about it on their website.)

AAKP has been in the news and across social media lately as public interest continues to build in KidneyWorks – a groundbreaking national initiative we developed in full collaboration with our partners at the Medical Education Institute (MEI). The multiphase initiative aims to identify and address barriers to continued employment for individuals with chronic kidney disease (CKD). Phase I of KidneyWorks involved a consensus roundtable of national experts on kidney disease and workforce experts who convened in Washington, D.C. and the development and public release of a White Paper detailing strategies to help working-age people with non-dialysis chronic kidney disease (CKD) improve their lives, slow CKD progression, and keep their jobs. Phases II and III will involve the development, production and dissemination of strategies and online and mobile tools that help workers, caregivers and employers help achieve the goals of KidneyWorks.

Until next week,
Keep living your life!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

The Other Side of the Coin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

How Did It Get Political?

A couple of weeks ago, I wrote about Dr. Amy D. Waterman at UCLA’s Division of Nephrology’s Transplant Research and Education Center. We’d met at Landmark’s 2017 Conference for Global Transformation. She has brought to the world of dialysis and transplant the kind of education I want to see offered for Chronic Kidney Disease. I also asked for ideas as to how I could help in developing this kind of contribution to CKD awareness… and the universe answered.

First the bad news, so you can tell when the good news come in. Here in the U.S., The National Kidney Foundation at https://www.kidney.org/news/national-kidney-foundation-statement-macarthur-amendment-to-american-health-care-act issued the following statement on May 3 of this year:
“The National Kidney Foundation opposes the American Health Care Act (AHCA) as amended. The amendment to AHCA, offered by Representative Tom MacArthur (R-NJ), raises significant concerns for millions of Americans affected by chronic diseases. If this bill passes, National Kidney Foundation is highly concerned that insurers in some states will be granted additional flexibility to charge higher premiums, and apply annual and lifetime limits on benefits without a limit on out-of-pocket costs for those with pre-existing conditions, including chronic kidney disease. The bill also permits waivers on Federal protections regarding essential health benefits which could limit patient access to the medications and care they need to manage their conditions. These limits could also include access to dialysis and transplantation. For these reasons, we must oppose the legislation as amended.


In addition, National Kidney Foundation is concerned that the elimination of income based tax credits and cost sharing subsidies, combined with the reduction in funds to Medicaid, will reduce the number of people who will obtain coverage; many of whom have, or are at risk for, chronic kidney disease (CKD).”

The world sees what stress Trump is causing our country (as well as our planet.) Yet, there is hope in the form of a new bill.

“… the bill — introduced in the House by Reps. Tom Marino (R-Pennsylvania), John Lewis (D-Georgia) and Peter Roskam (R-Illinois) — aims to:
• Have the Department of Health and Human Services (HHS) and U.S. Government Accountability Office (GAO) issue a series of recommendations to Congress on “how to increase kidney transplantation rates; how palliative care can be used to improve the quality of life for those living with kidney disease; and how to better understand kidney disease in minority populations” – to back federal research efforts;
• Create an economically sustainable dialysis infrastructure and modernized quality programs to improve patient care and quality outcomes — for instance, by creating incentives to work in poorer communities and rural areas;
• Increase access to treatment and managed care for patients with a confirmed diagnosis of kidney disease by ensuring Medigap coverage for people living with ESRD, promoting access to home dialysis and allow patients with ESRD to keep their private insurance coverage.
According to the National Kidney Foundation, more than 660,000 Americans are receiving treatment for ESRD. Of these, 468,000 are undergoing dialysis and more than 193,000 have a functioning kidney transplant.”

Thank you to the CDC at bit.ly/2rX8EG5 for this encouraging news. Although it’s just a newly introduced bill at this time, notice the educational aspects of the first point.
For those outside the U.S, who may not know what it is, this is how Medicare was defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.”

An interview with Trump while he was campaigning last year was included in SlowItDownCKD 2016, (11/14/16) This is what he had to say about medical coverage for those of us with pre-existing conditions like CKD. (Lesley Stahl is the well-respected interviewer.)
“Lesley Stahl: Let me ask you about Obamacare (Me here: that’s our existing health care coverage.), which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?
Donald Trump: Yes. Because it happens to be one of the strongest assets.’ ….
What does the president elect say about Medicare? Those of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t’ pay, neither does my secondary.”

This is from the same book:
“Here’s what Trump had to say in a rally in Iowa on December 11th of last year (e.g. meaning 2015).
‘So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….'”

We do not have the most truthful president here in the U.S., so you can see how even the introduction of the Marino, Lewis, Roskam bill is good news for us. While this is not meant to be a political blog, our pre-existing illness – our CKD – has caused many of us to unwittingly become political.


I see myself as one such person and so will be attending the AAKP Conference in St. Petersburg, Florida, in September. What’s the AAKP you ask? Their Mission Statement at https://aakp.org/mission/ tells us:

“The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education
The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy
For more than 40 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community
AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.”

For those of you of can’t get to the Conference, they do offer telephone seminars. The next one is June 20th. Go to https://aakp.org/aakp-healthline/ for more information.

Talking about more information, there will be more about AAKP in next week’s blog.
Until next week,
Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

Ratio: Is That Like Rationing?

urine containerA friend called me Friday night wondering what her creatinine/albumin ratio meant since that reading was high on her last blood draw. Actually, she wanted to know if this was something to worry about. After extracting a promise that she would call her doctor with her questions today when her physician’s office opened for business again, I gave her some explanations. Of course, then I wanted to give you the same explanations.

Although the Online Etymology Dictionary tells us both ratio and rationing are derived from the same Latin root – ratio – which means “reckoning, calculation; business affair, procedure,” also “reason, reasoning, judgment, understanding,” they aren’t exactly the same. My old favorite, The Merriam-Webster Dictionary defines ratio at dictionaryhttps://www.merriam-webster.com/dictionary/ratio in the following way: the relationship in quantity, amount, or size between two or more things, as in that of your creatinine and albumin.

As for rationing, if you’re old enough to remember World War II, you know what it means. If you’re not, the same dictionary can help us out again. At https://www.merriam-webster.com/dictionary/rationing, we’re told it’s “a share especially as determined by supply.” Nope, doesn’t work here since we’re not sharing our creatinine or albumin with anyone else. We each have our own supply in our own ratios, albeit sometimes too high or sometimes too low.

What are creatinine and albumin anyway? Let’s see what we can find about creatinine in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

“Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.”

Well, what about albumin? This can get a bit complicated. Remember, the UACR (Hang on, explanation of this coming soon.) deals with urine albumin. There’s an explanation in SlowItDownCKD  2016 about what it’s not: serum albumin.

“Maybe we should take a look at serum albumin level. Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, ‘Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.’ Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.”

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This is from SlowItDownCKD 2015 and explains what the UACR is and why your albumin-to-creatinine ratio (UAC R) is important:

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.”

Basically, that means if you have a high UACR once, get your urine retested a week or two later before you even think about worrying, which is what my friend’s doctor confirmed. But do make sure to get that second test so you can be certain your kidney function is not being compromised.

I was thrilled that both my paper and notes from the field about Chronic Kidney Disease Awareness were accepted for Landmark’s Journal for the  Conference for Global Transformation AND then be able to Journal for the Conference for Global Transformationpresent a poster about it during the conference this past weekend. In addition I was lucky enough to have lunch with one of the keynote speakers. Who, you ask? Amy D. Waterman, Ph.D.

This is one important person to us. She has changed the face of pre dialysis and transplant education globally by starting “an educational nonprofit corporation and has been awarded more than $20 million in grants…she has reached tens of thousands of people to date, educating them in the miracle of live organ donation. Last year, Dr. Waterman was invited to the White House to share about the possibility of ending the organ donor shortage.” This material is from the Journal of the 2017 Conference for Global Transformation, Volume 17, No. 1.

This is exactly what we need to do for early and moderate stage CKD. This is what the social media presence, the blogs, and the books are about. And you know what? That’s just.plain.not.enough. Last I heard, I have 107,000 readers in 106 countries. And you know what? That’s just.plain.not.enough. Am I greedy? Absolutely when it comes to sharing awareness of CKD. Do I know how to expand my coverage? Nope…not yet, that is. I am so very open to suggestions? Let me hear them!

K.E.E.P.Lest we forget, this year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. As they’ve stated, “The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.”

Until next week,

Keep living your life!

 

B.U.N. No, not bun. B.U.N.

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

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

“If necessary, meaning if your kidney function is compromised, your pcp will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Recreating Creatinine

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

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

“Creatinine is a waste product of muscle activity. What actually happens is that our bodies use protein to build muscles and repair themselves. This used protein becomes an amino acid which enters the blood and ends up in the liver where it is once again changed.  This time it’s changed into urea which goes through the kidneys into the urine.

The harder the muscles work, the more creatinine that is produced and carried by the blood to the kidneys where it also enters the urine.  This in itself is not toxic, but measuring the urea and creatinine shows the level of the clearance of the harmful toxins the body does produce.  These harmful toxins do build up if not voided until a certain level is reached which can make us ill. Working kidneys filter this creatinine from your blood.  When the blood levels of creatinine rise, you know your kidneys are slowing down.  During my research, I discovered that a non-CKD patient’s blood is cleaned about 35 times a day. A CKD patient’s blood is cleaned progressively fewer times a day depending upon the stage of the patient’s disease.”

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

“Because there are often no symptoms of kidney disease, laboratory tests are critical. When you get a screening, a trained technician will draw blood that will be tested for creatinine, a waste product. If kidney function is abnormal, creatinine levels will increase in the blood, due to decreased excretion of creatinine in the urine. Your glomerular filtration rate (GFR) will then be calculated, which factors in age, gender, creatinine and ethnicity. The GFR indicates the person’s stage of Chronic Kidney Disease which provides an evaluation of kidney function.”

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

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

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

If necessary, meaning if your kidney function is compromised, your PCP will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN – BUN stands for blood urea nitrogen.

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

Urine:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Getting a Little Too High

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

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

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

Time to back track. What is uric acid anyway?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life.

Yet Another Possibility

Today we have yet another fitness plan? Weight loss plan? Health plan? Beauty plan? I don’t know what to call it since they offer so many different types of products. What’s that, you ask. It’s called Wakaya Perfection. It seems a great number of my friends and acquaintances have been involved in their health in this way recently. They, however, do not have Chronic Kidney Disease.

Let’s get this part out of the way: I want to go there. Yes, there. Wakaya is not only a company, but an island in the South Pacific and it.is.beautiful. Take a look at their website (wakayaperfection.com) so you can see for yourself… but, of course, that’s not what this blog is about.

The company has several different lines, so I decided to look at one product from each to evaluate them for CKD patients. Remember, should they not be viable options for CKD patients does not mean they’re not viable for those without CKD.

Let’s start with the weight loss products since that’s what’s on my mind lately. That would be the Bula SlimCap. This is what their website has to say about these caps:

“At Wakaya Perfection, when we say all natural, that is exactly what we mean. Our tropical flavors are:

  • Sugar Free
  • Fat Free
  • Gluten Free

And Contain:

  • NO Artificial Flavors, Ingredients or Colors
  • NO Monosodium Glutamate (MSG)
  • NO Insect or Animal Matter
  • NO Growth Hormones
  • NO Antibiotics
  • NO Herbicides or Pesticide

That sounds great and appeals to me. Wait a minute, natural is good, but what is it that’s natural? I couldn’t find an ingredient list other than this:

  • All Natural Flavors
  • Active Ingredients
  • Pink Fijian Ginger
  • Stevia Reb-A 98%
  • Quick Dissolve Blend

What makes it a quick dissolve blend? What are the all natural flavors? What are the active ingredients? Ginger is permissible for CKD patients, but how much ginger is in each cap? And as for Stevia Reb-A 98%, this is a warning I found on New Health Guide at http://www.newhealthguide.org/Stevia-Side-Effects.html: “The FDA has noted that stevia may have a negative impact on the kidneys, reproductive, cardiovascular systems or blood sugar control.” Uh-oh, they mentioned our kidneys.

Oh well, that’s only one product and maybe there’s some other source of ingredients somewhere. Hmmm, I’d want to know what’s in a product and how much of each ingredient is in it before I took it, especially with CKD on my plate.

Let’s switch to a fitness product. I stayed away from the protein shake meal replacements for the reasons I explained about such products in SlowItDownCKD 2016. This is the poignant part of that blog:

“Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? Here’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

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

Why don’t we take a look at the BulaFit Burn Capsules? Wakaya Perfection describes them as,

“A potent combination of herbs and extracts that help you manage appetite/cravings while providing sustained energy and heightened focus throughout your day. BulaFIT BURN™ is designed to help boost fat burning and provide a sense of wellbeing that reduces cravings for food and snacking.

When combined with a healthy diet and exercise, BURN capsules promote a sense of well being and energy that reduces cravings for food and snacking. BURN can also play an important role in increasing the results of ketosis and even avoiding the ‘keto flu’ that some people may experience with other ketogenic programs.”

Huh? What’s keto flu? I figured a site with the name Keto Size Me (http://ketosizeme.com/keto-flu-101-everything-need-know/) could help us out here… and they did. “The ‘keto flu’ is what we commonly call carbohydrate withdrawal symptoms. These symptoms usually occur in people who start a low carb diet that alters their hormones and causes and electrolyte imbalances.”

Wait! Electrolyte imbalances? But we work so hard with the renal diet trying to keep these within the proper range for CKD. I went back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a little reminder about electrolytes.

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride, and bicarbonate. They maintain balance in your body….Too much or too little of a certain electrolyte presents different problems.”

Nope, not me. I’m keeping my electrolytes right where they belong. This is not looking good for the Chronic Kidney Disease patient. I vote no; you, of course, have to make up your own mind.

News of a local opportunity: This year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.

Until next week,

Keep living your life!

The Helper Asks for Help

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

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

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

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

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

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

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

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

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

Additionally, you must have one of the following:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

February is Black History Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”IMG_2979

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

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

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

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

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

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

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

Until next week,

Keep living your life!

I’m Wearing Out

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

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

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

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

…advantages:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Until next week,

Keep living your life!

What Are You Doing for Others?

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

mlk-do-for-others

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

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

stages of CKDWe also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.IMG_2979

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Starting the New Year with a Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Miracles Redux

Welcome to the last blog of 2016. I find it hard to believe another year has passed, although I do acknowledge that I’m a bit slower and more new-years-eve-celebrations-live-streamcontent to stay in my office to write rather than run around town. It’s a bit harder to maintain my body, although my mind is doing fine… as long as I don’t have to remember too much at once, that is. Well, my knees may have something to say, but I try to keep them happy with daily exercise and the braces.knee brace

I sincerely hope you enjoyed a joyous Christmas if you celebrate. And that you continue to enjoy Chanukah and Kwanzaa (which starts today) if you celebrate. We’ll be leaving for the Trans-Siberian Orchestra concert as soon as I finish the blog… a gift from us to us and one of the kids for Christmas. On Wednesday, we’ll have our Annual Chanukah Gathering. Our New York daughter will be with us since her Chanukah gift is a plane ticket. Being a two religion family, we celebrate both Chanukah and Christmas.

Before I get to more about creating a miracle, I am proud to announce that Healthline, a trusted health information site,  has named SlowItDownCKD one of The Best Kidney healthlineDisease Blogs of 2016. Talk about being surprised… and honored. Sort of a nice Christmas present, don’t you think? I suppose I can consider the publication of my novel, Portal in Time, my Chanukah present. I didn’t do too shabbily this year.

You know, it’s never too late to give either the novel or one of my Chronic Kidney Disease books as a present. Don’t forget you deserve presents, too.

Okay, on to more about miracles – or Part 2 – as I promised last week.

Unhealthy%20KidneyIf CKD were common knowledge, if those in high risk categories were aware of it, we might have a chance of preventing the disease in those who don’t have it yet and/or slowing down the progression of the decline in kidney function of those who have been already diagnosed.

Exactly how can we do that? On the most basic level, there’s the spoken word. It’s not just the medical community that can talk about the disease. I can as a patient. You can, too, because you know me and I’ve told you about the disease (and/or you suffer from CKD yourself).  This is most effective in areas of the world that do not have access to – or money for – doctors and treatment.  This is where we can prevent more and more of the disease by preventing more and more hypertension and diabetes.

If I tell you what I know about curtailing sodium intake in high blood pressure and you tell me what you know about smoking as it contributes to hypertension, we’ve just shared two important aspects in the prevention of high blood pressure. If I tell you what I know about sugar in diabetes Healthy%20Kidneyand you tell me what you know about carbohydrates and diabetes, we’ve just shared two important aspects in the prevention of diabetes. Then my husband starts sharing what he knows… and your third cousin once removed shares with her East Indian neighbor what her nephrologist told her… and your boss’s secretary shares what his boyfriend learned at his CKD awareness meeting, you’ve got a lot more people aware of what needs to be done about CKD. Sometimes causing a miracle is played out by sharing with people. Think of the miracle this kind of communication on a daily basis can cause.

The people you speak to will share with those they know, those they know will share with others they know until many, many hairmore people become aware of CKD – just as that long ago Clairol hair coloring ad demonstrated how telling someone who tells someone can go on ad infinitum. Simplistic? Yes, but it works…and that’s part of living the life of causing a miracle in CKD.

Then there’s the printed word. If people are aware of CKD books and newspapers, business and educational publications can alert their populations that the disease exists and is lethal, but may be prevented and/or slowed down. Most businesses have wellness components. What perfect vehicles to transform the world’s awareness of CKD.IMG_2979

For example: my four Chronic Kidney Disease books are sold in 106 countries. I have 107,000 readers. This in itself is a miracle, not just for me but for everyone who is in some way connected to the disease. It is not uncommon for one community member to buy the book, then share it with everyone else in their social circle. If there’s a library, the books can be ordered and then shared for free.

These are some of the pieces I’ve written: American Kidney Fund   “Slowing Down CKD –  It Can Be Done”  7/14/16, Dear Annie 10/14, KidneySteps  9/11/13  &  7/4/12, National Kidney Foundation 6/6/13, It Is What It Is 3/9/12, Kevinmd.com 1/1/12, Working with Chronic Illness 1/11/10, KidneyTimes 1/11/10. Bragging? No, just demonstrating it can be done… but I had to cause it to happen by knocking on doors.

I also share my information via this blog. A doctor in a remote village in India prints and translates it to share with whichever patient has the bus fare to make it to the clinic. That patient brings the translation back to his family, friends, neighbors, and whoever else he thinks may be interested. blood drawThis nephrologist’s view is the same as mine: We both need to live a life causing a miracle in Chronic Kidney Disease Awareness by sharing information. People who may not have known Chronic Kidney Disease exists now know via this sharing. Others who have undergone the simple blood and urine tests to diagnose the illness can share that the tests are not painful, other than the initial pinch of the needle for the blood draw. You would be surprised how many people, even in the high risk groups, don’t take the tests because they fear there will be pain involved. No sharing, no awareness. No awareness, no diagnose. No diagnose, no slowing down the disease.

Here are some of the blog and book mentions that have helped in my sharing of the information: Federal Register 9/25/13, The Neuropathy Doctor’s News 9/23/13, The NephCure Foundation 8/21/11, World’s Leading Expert.com 9/11/12, Glendale Community College Gaucho Gazette 8/22/11. These came about without my intervention. So what you share gets shared by others….

I’ve got some more thoughts, but we’ll have to leave them for Part 3 in the New Year. This blog is getting too long and my family is waiting for me.  Happy New Year to each and every one of you. Please be safe if you’re going out to celebrate.

Until next week and the New Year,

Keep living your life!

 

It’s a Miracle!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Medical Individuals

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

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

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

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

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

cjasn

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

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

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

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes IMG_2980through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.”

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Starting My Day

Every day, I spend the morning doing ‘kidney work’ as I call it. That means looking for Chronic Kidney Disease related articles on Facebook, Twitter, LinkedIn, Instagram, Pinterest, and perusing the various medical newsletters to which I’ve subscribed. This takes a minimum of two hours. I also post something on most of these sites at as SlowItDownCKD.newckdfbcover

I noticed I’d been reading more and more about the plant based diet being good for CKD patients, so that’s what I posted on SlowItDownCKD’s Facebook page at https://www.facebook.com/SlowItDownCKD/on November 1. Then I started receiving emails from readers about it.

One was a very interesting, but undocumented, chart concerning how avoiding red meat lowers the risk of CKD. There was no title … and to make it worse, the reader – Cindy – couldn’t remember where she found it. She was frustrated; I was frustrated. So I did a little digging.

I started with a site that’s fast becoming one of my favorites – NephJC, a journal club. According to their website,

“It is the teaching session where trainees and teachers exchange roles. Journal Club is the area where the flipped classroom has been fully implemented in medical education. Read and study the article at home, and then use classroom time to critically debate the methods, results and interpretation of the article.”GFR

As both a former high school and college instructor, I can tell you this method of teaching seemed to have sparked some super creative thoughts in my classroom. Anyhoo, as they say, that’s where I found the chart. More specifically, it’s at http://www.nephjc.com/news/2016/8/17/red-meat-summary. Read the article. It’s got more information.

red-meat-chart

Cindy also mentioned that she lost so much weight – without being hungry – on the plant based diet that her nephrologist asked her to gain weight so that she wouldn’t “be at the bottom of BMI or below.” You know this grabbed my attention.

At the same time we were corresponding, another CKD Awareness Advocate posted in a private FB group (Hence, the reason he remains unnamed.) that in his last two nephrology labs, he raised his GFR something like eight or nine points and had nothing to attribute it to but changing to a plant based diet.FullSizeRender (2)

As a reminder, here’s the definition of GFR from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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.”

Let’s look at this a little more closely. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I wrote a blog about the limited history of nephrology and included mention of the five stages of CKD. Basically, the higher your GFR, the better your kidneys are working. FullSizeRender (3)So this means the other advocate’s kidneys are functioning better now that he’s on a plant based diet. Why?

I turned to Dr. Greger’s NutritionFacts.org on YouTube for a better explanation than any I could offer. Dr. Greger is Michael Greger, described on NutritionFacts.org as:

“a physician, New York Times bestselling author, and internationally recognized speaker on nutrition, food safety, and public health issues. A founding member and Fellow of the American College of Lifestyle Medicine, Dr. Greger is licensed as a general practitioner specializing in clinical nutrition. He is a graduate of the Cornell University School of Agriculture and Tufts University School of Medicine.”

NutritionFacts.org, while new to me, describes itself on its site as:

“a strictly non-commercial, science-based public service provided by Dr. Michael Greger, providing free updates on the latest in nutrition research via bite-sized videos. There are more than a thousand videos on nearly every aspect of healthy eating, with new videos and articles uploaded every day.”IMG_2982IMG_2980

I thoroughly enjoyed his analogy of overloading the kidneys with meat protein to that of constantly revving a car’s engine, especially since that’s the same analogy I used in my first CKD book.  He also mentions inflammation as a contributing cause of lower GFR. I’m glad I’ve discovered his website and intend to take a closer look at it…just not now.

Now I’m really interested in going back to Cindy’s comment about losing weight on the plant based diet. I wanted to know – what else? – why. I spent most of yesterday researching. The consensus seems to be that not having to count calories or portion control may have something to do with it.  Then again, maybe it’s the lack of cookies, cakes, and candies. The few medical studies I did find were far too complicated for me to understand, much less explain. Are there any readers out there who can help? I have one particular reader in mind and hope that she will immediately respond.

Let’s see if I can do any better with finding out why the nephrologist of the reader I’m corresponding with doesn’t want her to “be at the bottom of BMI or below.” Aha! A study by US National Library of Medicine, part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/26920126 suggests that “that combined effects of low BMI … and serum albumin level … are associated with CKD progression.”

NIHMaybe we should take a look at “serum albumin level.” Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, “Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.” Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.

Even with yesterday’s research, this blog has taken quite a while to complete … and not just because I was doing the wash while I wrote it, or because I was enjoying having the window to my right open as I wrote. I can see this becoming several additional blogs… if there’s reader interest.

Until next week,

Keep living your life!

TED Doesn’t Talk to Me; But YouTube Does

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

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

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

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

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

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

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

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

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

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

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

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

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

YouTube is a Google company.”

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

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

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

Threats

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

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

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

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

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

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

Until next week,

Keep living your life!

Not Your New Age Crystals

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

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

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

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

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

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

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

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

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

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

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

CAD: coronary artery disease

hyperlipidemia: high cholesterol

hypertension: high blood pressure

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

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

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

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

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

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

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

So now, we need to watch purines and potassium, too. Aha! Following the renal diet already is helping to avoid potassium. What about purines? According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

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

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

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

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

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

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

IMG_2980Until next week,

Keep living your life!

How Sweet She Is

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FullSizeRender (2)

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

Until next week,

Keep living your life!

The Nutrition Action Health Letter Article

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

This is how Amazon explains these programs:

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

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

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

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

Until next week,

Keep living your life!

The American Kidney Fund Blog

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

Slowing Down CKD—It Can Be Done

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

No doctor had ever mentioned CKD before.

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

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

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

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

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

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

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

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

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

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

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

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

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

Until next week,

Keep living your life!

Psoriatic Arthritis on Memorial Day

Memorial DayToday is Memorial Day. I find myself having a hard time saying ‘happy’ and ‘Memorial Day’ together.

For those of you outside of the U.S., this is a holiday started as Decoration Day by freed slaves after our Civil War to commemorate the lives of those who died earning their freedom. Slowly, individual states made this day for decorating graves a holiday and then it became a national one.

I am married to a veteran. There is nothing happy about this holiday, although there is respect and gratitude… at least in my house.

I have respect and gratitude for our living soldiers, too. That brings us to the subject of today’s blog: psoriatic arthritis and Chronic Kidney Disease. A close friend of the family – an Airman – wanted this information for his father. I was happy to oblige him, even more than I usually am to answer readers’ questions since he is military and he asked on Memorial Day.

As usual, we need to go back to the basics here. In this case, that means going back to the blog about psoriasis in The Book of Blogs: ModerateDigital Cover Part 2 redone - Copy Stage Chronic Kidney Disease, Part 2.   That’s where I first wrote the following information about psoriasis:

“…according to Psoriasis.com at http://www.psoriasis.com/what-is-psoriasis.aspx

‘psoriasis is a chronic (long-lasting) disease of the immune system. While the exact cause of psoriasis is unknown, scientists believe the immune system mistakenly activates a reaction in the skin cells, which speeds up the growth cycle of skin cells.’

There are seven types of psoriasis.  The one you are probably familiar with – if you are familiar with any – is plaque psoriasis. WebMD at http://www.webmd.com/skin-problems-and-treatments/psoriasis/psoriasis-types?page=1  tells us:

psorasis‘About eight in 10 people with psoriasis have this type. It is also sometimes known as psoriasis vulgaris. Plaque psoriasis causes raised, inflamed, red skin covered by silvery white scales. These may also itch or burn. Plaque psoriasis can appear anywhere on your body….’

Here’s the most important information in that particular blog for us as CKD patients:

“…doctors now know they need to screen psoriasis patients for CKD, although it seems to be only those patients with over 3% of their bodies affected by psoriasis who have doubled their risk of CKD. With 60% of the population at risk for CKD, it could be that percentage may change once these routine CKD screenings for psoriasis are in place, especially since psoriasis is also so common among every ethnic group.  This, of course, also includes those populations we know are at high risk for CKD.”

But my young Airman friend asked about psoriatic arthritis and Chronic Kidney Disease, so we need to take a look at what arthritis is.

According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

arthritis

“Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the knees, wrists, fingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

Hmmm, no mention of psoriatic arthritis. That’s all right. I’m sure the American College of Rheumatology can help us out here. There’s more information on their site at http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Psoriatic-Arthritis.

“Psoriatic arthritis is a type of inflammation that occurs in about 15 percent of patients who have a skin rash called psoriasis. This particular arthritis can affect any joint in the body, and symptoms vary from person to person. Research has shown that persistent inflammation from psoriatic arthritis can lead to joint damage. Fortunately, available treatments for are effective for most people. Psoriatic arthritis usually appears in people between the ages of 30 to 50, but can begin as early as childhood. Men and women are equally at risk. Children with psoriatic arthritis are also at risk to develop uveitis (inflammation of the middle layer of the eye). Approximately 15 percent of people with psoriasis develop psoriatic arthritis. At times, the arthritis can appear before the skin disorder.”

Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association at https://www.aad.org/Forms/Policies/Uploads/PS/PS-Maintenance%20Therapy%20for%20Psoriasis%20Patients.pdf:

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

SlowItDownCKD 2015 Book Cover (76x113)

Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease. So what, if anything, can my young Airman friend suggest to his father (other than the most important: See your doctor.)?

What is itCertainly not to take NSAIDS. I defined  – and cautioned against – NSAIDS in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. There’s been no new research to debunk this warning since then.

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

Well, what can the man do for these three inflammatory diseases? Let’s take a look at Dr. Rich Snyder’s guest blog in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. In discussing probiotics and alkaline water, he threw in this little gem.

Alkaline/anti-inflammatory based diet: Some say, “Eat for your blood type.” But, what is the DASH diet for hypertension? It is not just a low salt  It is also full of anti-oxidants and anti-inflammatory.”

Food as medicine for an inflammatory body condition? DASH diet? Whoa! I just realized that this is the way I’ve come to eat myself in the last nine years.  What is the DASH diet? “DASH stands for Dietary Approaches to Stop Hypertension….”

Take a look at the Mayo Clinic’s information about this at http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/dash-diet/art-20048456. There’s far too much to explore here, but I do urge you to remember you have CKD, so although it is an inflammatory disease, you need to be mindful of your renal diet should you decide to adopt the DASH diet.food is medicine

Until next week,

Keep living your life!

Why Not Here?

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

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

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

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

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

What is it

 

SlowItDownCKD 2015 Book Cover (76x113)

 

IMG_1398

 

 

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

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

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

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

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

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

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

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

About NKF Peers

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

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

NKF-logo_Hori_OB

 

 

How do participants interact with each other?

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

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

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

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

Until next week,

Keep living your life!

How Sweet It Was

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

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

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

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

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

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

“The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It’s National Kidney Month

March is National Kidney Month.  In the last few years, I’ve offered a new Chronic Kidney Disease book for sale during this month, but free on IMG_1398World Kidney Day. This year that’s March 10th.  The third Book of Blogs: Moderate Stage Chronic Kidney Disease, this year’s offering, has been retitled SlowItDownCKD – 2015. If my CKD writing has a ‘brand name,’ that’s it. Same writer, same type of blogs; just a new title for the series.  Check both Amazon.com on March 10th for your free digital copy.

There’s a reason there’s such attention being paid to our kidneys.  Last year’s National Kidney Month ‘Dear Abby column’ explains.

“DEAR ABBY: Hypertension runs in my family, but as a pretty healthy 49-year-old, I didn’t think much about it. I never realized that my pounding headaches were a direct result of high blood pressure. To make matters worse, the same high blood pressure that was causing my head to throb was also destroying my kidneys.

I wish I had known about my high blood pressure sooner and taken it seriously. When I finally learned about my kidney damage, it was too late to save them.nephrons

More than 73 million people are at risk for developing kidney disease, and I sincerely want to help them avoid this fate. My battle with kidney disease has turned me into an advocate for patients and those who are at risk. In honor of National Kidney Month in March and World Kidney Day on March 12, (Me: That was the date last year.) Will you please help me spread the word? — Lance Taylor in Minnesota

DEAR LANCE: I’m pleased to help you in this worthwhile effort. According to the National Kidney Foundation, 1 in 3 American adults is at risk for kidney disease. Major risk factors for kidney disease include diabetes, high blood pressure, a family history of kidney failure and being age 60 or older. Additional risk factors include kidney stones, smoking, obesity and cardiovascular disease.

Kidney disease often goes undetected because it lacks physical symptoms until the very late stages. By then the organs have already failed. But early detection, healthy lifestyle changes and proper treatment can slow the progress of kidney disease. Those at risk should have simple blood and urine tests to check if their kidneys are working properly.

Readers, if you are at risk, during your next physical examination, ask your health care practitioner to check your kidneys. To learn more about prevention, visit kidney.org. You will also find information about free KEEP Healthy kidney screenings in your area.”

NKF-logo_Hori_OBI’ve written about the more than 50 local offices nationwide that help the NKF provide early-detection screenings and provide other vital patient and community services. I went to the website, clicked on ‘Keep Healthy Event in your area,” and up popped the locations of this particular event.

Several years ago, my daughter Nima asked if could guest blog during National Kidney Month from the perspective of someone who loves a person with CKD. These are some of the highlights of that blog.

“I have to admit when my mother first told me she had CKD I freaked out ever so slightly. My knowledge of CKD was minimal, if that, and it took more than a few times of Ma telling me that CKD was in fact manageable and not a death sentence to calm down…..

One thing I had to get used to was reminding myself to mention at doctor visits that a parent has CKD, and to please take blood work to keep an eye on my own GFR levels. Every now and then I’d also get a helpful reminder from Ma right before a doctor visit.

I … have another resource that not everyone else has: I have a mother who is also writing a very detailed book (Working on the 4th one now.) about her experiences with discovering she had CKD. Getting a chance to read the manuscript of her upcoming book was probably where I got the meat and potatoes of my CKD education. (Nima is the professional Reader for all the CKD books I write.)nima kidney

For those out there that have a loved one that was recently diagnosed with CKD ….don’t be afraid to ask questions about what you can do to help and what you should know about how CKD affects your family member or loved one. I was always worried about tiring my mother out until she finally explained to me that as long as she gets a chance to lay down/nap before we go out, she’s usually fine.”

But it’s not just getting tired; the following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article (which is still there and highly recommended) and, sure enough, I need to see an audiologist. Consider taking the online test yourself after you read this little known information about CKD patients.

“People with Chronic Kidney Disease Should Have Their Hearing Checked:

March is National Kidney Month

 People with Chronic Kidney Disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online hearinghearing test at http://www.hearingcheck.org. The non-profit Better Hearing Institute (BHI) is offering the test as part of its effort to raise awareness of the link between Chronic Kidney Disease and hearing loss. March is National Kidney Month. BHI’s online test will help people determine if they need a comprehensive hearing check by a hearing professional.”

Every part of you is affected by your Chronic Kidney Disease. That means that everyone in your life is affected by it, too. Bear knows I’ve got to exercise each day no matter what we have planned. My friends and family know that inviting us for dinner means I may not be able to eat what they’ve cooked, even if it’s ‘healthy.’ Think about that a bit and you’ll realize CKD is serious.What is it

Until next week,

Keep living your life.

Inked

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Digital Cover Part 2 redone - Copy“Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection, kidney function can be further reduced. The liver also filters toxins and drugs from the blood.”

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

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

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

Until next week,

Keep living your life!

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!

Another Cause of CKD?

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

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

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

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

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

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

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

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

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

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

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

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

Oh, so the stomach is part of the abdomen.

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

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

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

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

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

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

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

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

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

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

IMG_1398

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

Until next week,

Keep living your life!

Blood and Thunder, Without the Thunder

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

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

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

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

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

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

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

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

Albumin:   Water soluble protein in the blood.

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

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

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

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

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

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

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

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

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

blood pressure 300dpi jpg

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

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

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

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

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

Ready for some good news?

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

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

Until next week,

Keep living your life!

Well, What About Mexico?

Last week, I was telling you about Chronic Kidney Disease in the ports of call on our delayed (but finally arrived) honeymoon, which turned out to be a family honeymoon. But then, I ran out of room to talk about Mexico and promised to do so next week. So, as in the punchline of an off color joke my dad used to tell, “Here t’is.”cozumel

Unless you’re a scuba diver like my step-daughter and her sweetheart or a partying young’un, you may have not been to Cozumel. It’s a small part of the country on the East Coast and – again – we were warned not to get off the bus unless we were told to. It’s also where we got to see some of the Mayan ruins and learn about the culture, as well as take a side trip to a cacao factory.  That smelled so good! The rest for us was some really beautiful scenery from the bus windows and an overwhelming shopping area at port.

I‘ve been to San Miguel de Allende, in Guanajuato State, for a writers’ conference and met both American and Canadian ex-patriates there as well as those that winter in the relative warmth there.  No one said it’s not safe. No one said stay on the bus or within the compound…and I got to meet the natives, too. What a lovely, warm people.

I’ve been to Ensenada decades ago and marveled at how uncommercialized it was.  Of course, I don’t know if it’s still like that. I only have my memories there. I also vague memories of visiting different areas in Mexico long ago, but vague is the operant word here.stages of CKD

Never once did I think about Chronic Kidney Disease treatment while I was there until this last time. Heck, I didn’t even know what CKD was much less that it could be treated.

So, what about Mexico? It would make sense to deal with the most shocking news first.  This is from National Public Radio in April of last year.  You can read more about the various theories as to what caused the vast number of deaths at http://www.npr.org/sections/health-shots/2014/04/30/306907097/mysterious-kidney-disease-slays-farmworkers-in-central-america

nprThis form of kidney failure, known as insuficiencia renal cronica in Spanish (or chronic kidney disease of unknown origin in English), is now found from southern Mexico to Panama, Turcios-Ruiz says. But it occurs only along the Pacific coast.

The disease is killing relatively young men, sometimes while they’re still in their early 20s. Researchers at Boston University have attributed about 20,000 deaths to this form of kidney failure over the past two decades in Central America.

(More recent reports have suggested it was severe dehydration that caused CKD in these young men.)

This is from a 2010 report published in the National Institutes of Health PubMed at http://www.ncbi.nlm.nih.gov/pubmed/20186176

In KEEP México City, CKD prevalence was higher than the overall prevalence among participants with diabetes (38%) or diabetes and hypertension (42%). Most KEEP México participants were unaware of the CKD diagnosis, despite that 71% in KEEP México City had seen a doctor in the previous year. CKD is highly prevalent, underdiagnosed, and underrecognized among high-risk individuals in México. KEEP is an effective screening program that can successfully be adapted for use in México.

Just in case you’ve forgotten, KEEP is The National Kidney Foundation’s Kidney Early Evaluation Program.K.E.E.P.

As you can probably tell, current information is not that readily available. But I didn’t give up.

I found an abstract at ResearchGate that demonstrated that the homeless in Jalisco State (on the Western Coast and the home of many Mexican traditions) had a higher incidence than the poor for undiagnosed hypertension and diabetes in 2007. You can look at the exact numbers in this small study at http://www.researchgate.net/publication/260208642_Chronic_kidney_disease_in_homeless_persons_in_Mexico

Finally, something more recent! Brazilian Journal of Medical and Biological Research offered this information in their March 6, 2015 online issue.

BraziiIn Mexico, CKD prevalence among the poor is two-to three-fold higher than the general population, and the etiology is unknown in 30% of ESRD patients ….In Mexico, the fragmentation of the health care system has resulted in unequal access to RRT. In the state of Jalisco, the acceptance and prevalence rates in the more economically advantaged insured population were higher (327 per million population [pmp] and 939 pmp, respectively) than for patients without medical insurance (99 pmp and 166 pmp, respectively). The transplant rate also was dramatically different, at 72 pmp for those with health insurance and 7.5 pmp for those without it.

You may need some help understanding this, especially if you go to the source at http://www.scielo.br/scielo.php?pid=S0100-879X2015000500377&script=sci_arttext, so here it is. ESRD means End Stage Renal Disease, the point at which your body is no longer serviced by your kidneys and you need dialysis or a transplant. RRT is renal replacement therapy or, as we know it, dialysis or transplant.

And lastly from the Clinical Kidney Journal from January 20th of this year at http://ckj.oxfordjournals.org/content/early/2014/11/25/ckj.sfu124.full

In Mexico, the mortality on peritoneal dialysis is 3-fold higher among the uninsured population compared with Mexican patients receiving treatment in the USA, and the survival rate is significantly lower than the insured Mexican population….

Did you notice how often poverty and insurance were mentioned in the article (if you went to the websites)? I don’t know enough to make any conclusions, but it just might be that lack of money is at the root of such poor outcomes.

IMG_1398Meanwhile, between our honeymoon and a little jaunt to Las Vegas to meet cousins from New Hampshire when they come out to visit their mom who lives in Vegas, I am proud to say I am single handedly indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2… and enjoying it! Expect an announcement when the indexes are ready.

But, hey, why wait for announcements?  Starting this afternoon, there will be a giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Poor baby keeps getting ignored while I work on its younger twin siblings.

I’d better get back to those indexes.

Until next week,Book Cover

Keep living your life!

Here, There, and Everywhere

IMG_2867We did it! This attempt at our delayed honeymoon was a real honeymoon… only one with my brothers and sisters-in-law which made it even better in my book. (Like that play on words?)

We couldn’t take a honeymoon right after we married because I got sick. Thank you so much compromised immune system for that. Then Bear had surgery that laid him up for a long, long, long time or so it seemed.

We finally planned our delayed honeymoon to Vancouver, British Columbia (Thanks for the help in planning that part, Denis Beaudry.) and Alaska. Thank you for the help in planning that part, Mark Rosen.

Bear always wanted to cruise the Inside Passage and ride the Alaska Railroad. I always wanted to see the B.C. distant family talked about. We got our wishes but IMG_1320couldn’t enjoy much of them due to Bear contracting cellulitis on the second day. That meant IVs and high fevers. Trash delayed honeymoon attempt #1.

But then, due to my sister-in-law’s generosity in inviting us to try a honeymoon again by joining my brother and her on their 48th anniversary/her birthday cruise, we finally got our long awaited honeymoon. We’d been married 2 ½ years by this time.

To round out the fun, brother #2 and his wife decided to join us.  Although various combinations of us have been together throughout the years, the five of us hadn’t all been together in 27 years!!!!! Bear was the most welcomed newcomer to the family.

oasis of the seasRoyal Caribbean International did it up, well, royally. Of course, this was only my second cruise, but my family is cruiseophiles and they told me this was so. I took a writer’s liberty to make up a word here. It means lover of cruises. Feel free to steal it.

So, what does any of this have to do with Chronic Kidney Disease, you ask? We did go to three different countries, although there was only a limited shore excursion in each and we saw only what tourists see in each. (Here comes my favorite phrase.) That got me to thinking. I wondered what CKD treatment was like in each of these countries.

Our first port of call was Labadee, Haiti. I’m told this is a very dangerous area. The comedian onboard likened the tourist area to Jurassic Park in that it is totally fenced in to protect the tourists and keep out the local people.  Funny, the cruise line referred to it as ‘a private beach.’ I guess it’s all a matter of prospective.

We took a catamaran ride in order to see more than the ‘private beach’ allowed and were repeatedly cautioned not to leave the encampment that was the tourist attraction, other than these sanctioned boat rides.  That’s also where we learned there are no police there. But was there CKD treatment?What is it

 

According to National Institutes of Health (in the background material of the abstract of a small study of CKD in the rural areas of Haiti):

In the Caribbean region chronic kidney disease (CKD) is an increasing challenge. High rates of non-communicable and infectious diseases and the rise in people suffering from diabetes and hypertension explain the observed and further expected increase of CKD. However, data about the magnitude of the problem are rare and in some countries such as Haiti completely lacking.

You can read a little bit more at http://www.ncbi.nlm.nih.gov/pubmed/25535765

So what data might there be? I did find a blog about another small study at http://blog.smw.ch/chronic-kidney-disease-in-a-rural-region-of-haiti/. However, this contained cautions about the population of the study and the fact that – again – only one rural region was studied. They did have some interesting, although not surprising, results.

CKD was found in 27% of the study population. Risk factors independently associated with CKD were: hypertension, HIV infection and age >60 yr.

What makes it worse is that Haiti has 80% unemployment and very few people have health insurance.

IMG_1398Maybe our next port of call, Falmouth in Jamaica, was more involved with CKD.

I went to http://www.worldlifeexpectancy.com/jamaica-kidney-disease for the following information.

According to the latest WHO [Reminder: that’s the World Health Organization.] data published in may (sic) 2014 Kidney Disease Deaths in Jamaica reached 550 or 3.08% of total deaths. The age adjusted Death Rate is 20.00 per 100,000 of population ranks Jamaica #37 in the world.

CKD is the ninth leading cause of death in Jamaica. It’s the eighth leading cause of death here in the United States. It’s a teeny country; ours is not. Draw your own conclusions.

Although we were again warned not to wander off by ourselves since this was also considered a dangerous country, we were able to tour a 1700s plantation. Just as Haiti, it was absolutely beautiful, but again – we saw only a few roads and what we were allowed to see. One of my brothers and his wife took a walking food tour and were appalled at how poorly the inhabitants of the country lived. Remember, we were only tourists formulating opinions on our quick view of each of these countries.

I was quite taken with the direct approach of The West Indian Medical Journal’s assessment of CKD in the Caribbean, although they do not especially mention labadee and falmouthJamaica.

There are not enough nephrologists in Caribbean countries and some countries may lack a nephrology service. Coordinating patient care between specialist and primary care physicians is essential in managing the burden of this growing disease.

You can read more at http://caribbean.scielo.org/scielo.php?script=sci_arttext&pid=S0043-31442011000400017

The only other information I could find was from 1999. I felt 16 years was a long time ago, too long to include that information here.

My conclusion is that these developing countries are well aware of the increasing incidence of CKD among their population, why it’s there, and how much of a financial burden it represents. You need to remember that both countries have a predominantly black population (although there’s been plenty of intermarriage) which historically has a higher incidence of hypertension, one of the leading causes of CKD.

Oh boy, looks like we’ll have to leave our last port of call – Cozumel in Mexico – until next week.

Until next week,

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

5/29/15 9/4/15
Microalbumin, Urine

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

How’s that for proof positive of what stress can do to you?  Other values also shot up, some past the normal range. While .57 to 1.00 mg/dL is within range for creatinine, I knew mine was a bit beyond this range. Now it’s shot up from 1.02 to 1.12.

My glucose – which I’ve spent over a year getting and keeping in range – went up from 94 to 117 mg/dL. The normal range is 65-99.

And my GFR? Oh no, down to 51 from 56.  So now I’m a stressed, sicker person.

Mind you, this was unavoidable stress. There was a medical emergency in the family (No, it’s not me.) and, by default, I was the one handling it. There simply wasn’t anyone else to do it at the time and it had to be dealt with immediately.  It was that kind of emergency.

There went the carefully orchestrated seven hours of sleep a night.  A 36 hour round trip to New Jersey with snatches of sleep here and there killed that.

There went the carefully orchestrated daily exercise. I couldn’t leave the patient alone long enough to even walk the airports… and the patient was incapable of doing it, anyway.

There went the carefully orchestrated ingestion of 64 fluid oz. It was catch as catch can since you can’t bring water into the gate area and they only had flavored or mineral infused water for sale once you passed the entry area.

There went the carefully orchestrated renal diet.  No, wait, that one I was very, very careful about.  I just drove the restaurant servers nuts with all my modifications. I figured if I could hold on to that, maybe I wouldn’t do as much damage to my kidneys and sugar levels as I feared I might.

Now that I’ve started in medias res (Latin for in the midst of things. Something I remember from long, long ago at Hunter College…even in an emergency.), let’s backtrack a little.  The obvious mystery is mg/dL. I have responded ‘huh?’ to this before. It means milligrams per deciliter.

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

(Courtesy of http://www.csgnetwork.com/directvolcvtdl2fo.html)

You’re probably familiar with mg. if you take any prescription medication.  As for deciliter? (I love that I remember so much from college almost 45 years ago.) That means 1/10 of a liter or 3.8 ounces. For the sake of full disclosure, I did have to look up the equivalent in ounces. So you see, there wasn’t that much change in my values, but enough for me – and my PCP – to notice.

Book CoverTo be perfectly honest, I had to use What Is It and How Did I Get It? Early Stage Chronic Kidney Disease as my bible to even understand these results.  Odd how you forget what you spent so much time learning… especially during an emergency.

TSH means Thyroid Stimulating Hormone. This is what I wrote about it.

“Part of the CBC [comprehensive blood test] which measures your triiodothyronine, which is a thyroid hormone that plays an important role in controlling your metabolism.  If the T3 reading is abnormal, then the T4 test is ordered to find out what the problem might be.

So it’s really a test to see if you need another test to check your thyroid function.  Notice how much closer I came to needing that secondary test while I was under stress. Although I was still within normal range, that was a significant jump.  No wonder my metabolism is screwed up. That is governed by your thyroid.

As for the Microalbumin, Urine, I was out of bounds there and, frankly, that worries me. This

“tests for micro, or very small amounts, of albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Well, I know I have Chronic Kidney Disease and I don’t like this indication that stress is making it worse. I’ve worked too hard for the last eight years to let this happen.

I’m hoping the renal dietician can help me get back on track when I see her later today. I follow the renal diet that was designed for me, but now I believe it needs some tweaking.food label

I’ve also been declared pre-diabetic since the last time I saw her.  Although I’ve been to see a diabetes counselor for several months, I’m wondering if today’s appointment with the renal nutritionist will give me ideas about how to include the pre-diabetes diet in the kidney disease diet.

I was down at my Primary Care Doctor’s appointment this past week; I won’t deny it. Add these test results to the family medical emergency plus 9/11 (I watched the buildings from my classroom window and went to more memorials that week than any 10 people should have to go to in a year.) and  unexpected death of a neighbor and I really wasn’t myself.  I finally asked her, “What’s the point of all my hard work if I end up with these results?”

Being the kind of person she is and the kind of doctor she is, she reminded me it was my hard work that kept my rising values from rising even more. Funny, but that got me right back on track.  Thank you to my PCP and other concerned doctors like her.

Talking about testing, here’s something locals should know about and it’s this Saturday, folks.

11990439_10204944411870363_4775265224050810062_n

Call me crazy, but I’m having quite a bit of fun indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. It seems to me that I’d rather be doing that or researching than working on my fiction.  Hmmmm, what am I telling myself?

IMG_1398

 

Until next week,

Keep living your life!

It’s the Funniest Thing…

You want to know about Chronic Kidney Disease brain fog?  Let me tell you about Chronic Kidney Disease brain fog.  I wrote a book about the Book Coverexperiences of the newly diagnosed CKD patient based upon my own experience – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Nice job on that one, Gail.

Four years later, I published The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2… with neither a topic listed for each blog nor an index. Well, how the heck are you supposed to find the information you’re looking for??? And it’s taken me this long to figure that out. Take it from me, CKD brain fog exists.

So, what is this CKD brain fog of which I speak? According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

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

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

It was www.naturopathconnect.com (a link that sometimes works, sometimes doesn’t) that offered me my first insight into how our kidneys and brain fog are connected.

bottled water“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

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

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

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  Okay, that’s logical.protein

The more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!

So how else can I alleviate my sometimes brain fog…especially since I’m working on three books at the same time as well as wanting to make some sort of index for the books mentioned above?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.

Dr. Isaac Eliaz who wrote the RodaleNews article in 2013 suggests several more natural remedies:

  1. Improve your diet and digestion.
  2. Detoxify.
  3. Support cell power.water to cells
  4. Control stress.
  5. Exercise.

I can agree with most of the items on Dr. Eliaz’s list no matter what’s causing the brain fog, but with CKD I’d talk over detoxing and/or taking supplements to support cell power with my nephrologist before actually following that advice.  Some nephrologists are dead (Yikes! Wrong word choice) set against detoxifying while others have a more eclectic approach to gentle detoxifying.

Supplements are a whole other story. There are so many different approaches here that I usually research whichever supplement I’m considering, then bring that research to my nephrologist to talk it over with him. Result: some supplements I agreed weren’t looking so good for me after our talk; others, he agreed were well worth a try.

Bahar Gholipour of Live Science at http://www.livescience.com/45502-foggy-brain-causes.html writes about other possible causes of brain fog. She includes multi-tasking, pregnancy, chemotherapy, menopause, and chronic fatigue syndrome among the causes. If any one of these causes exists in your life, maybe it’s not CKD brain fog you’re experiencing… or maybe it is… or maybe it’s a combination.  No one seems to be certain just what can cause brain fog, although I’m pretty comfortable with the explanations I’ve offered above.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.Kidney Arizona

Here’s a quick reminder about The National Kidney Fund of Arizona’s Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This consists of free blood and urine testing, which is evaluated onsite to assess for the risk of diabetes, heart and kidney diseases, and chronic disease management education, plus overall health assessment and one-on-one consultation with a physician for the screenees. A follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills is then offered.

Just like last week, one last thing: P2P’s Chronic Illness Buy & Sell page is on Facebook IMG_1398at https://www.facebook.com/groups/P2PBuy.Sell/.  It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

We Are Not Alone, Unfortunately

I have a friend who keeps telling me that Chronic Kidney Disease is not as widespread as I think it is and that I should stop scaring people by telling them it is. My usual way is to present facts, but not argue. In this case, I found myself arguing which made me wonder if I could be wrong.  Why protest so vehemently if I were sure I was right?

And that’s what today’s blog is about. First, you should know this has nothing to do with whether my friend is right, or if I am. It’s bigger than that… a lot bigger.

How big? Well, let’s start with the United States of America.  This diagram is from The National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-statistics/Pages/kidney-disease-statistics-united-states.aspx.

ckd

I don’t want to scare you too, but 2008 was seven years ago.  How much more has the incidence of new CKD cases risen since then?  Notice it’s the over 65 population with the dramatic rise in new cases. That’s my age group.  Maybe it’s yours, too.

[Reminder from the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: Medicare is the U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.]

This next bit of information is from the American Kidney Fund at http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf and shows us the numbers for 2012.  That’s getting closer to today, but it’s still three years ago.

Kidney disease is the 8th leading cause of death in the United States.

An estimated 31 million people in the United States (10% of the population) have chronic kidney disease (CKD).

9 out of 10 people who have stage 3 CKD (moderately decreased kidney function) do not know it.kidney interior

CKD is more common among women, but men with CKD are 50 more likely than women to progress to kidney failure (also called end-stage renal disease or ESRD)

Some racial and ethnic groups are at greater risk for kidney failure. Relative to whites, the risk for African Americans is 3.8 times higher, Native Americans is 2 times higher, Asians is 1.3 times higher, and Hispanics also have increased risk, relative to non-Hispanics.

I was diagnosed at stage 3, age 60, and had never heard of CKD before. This chart from the National Kidney Fund at www.kidney.org demonstrates the stages. The numbers outside the half circle represent the percentage of kidney function at each stage.

stages of CKD

That means I was one of the 9 out of 10 people who had stage 3 CKD and didn’t know it, even though I was a woman over 50 (actually, well over 50). Talk about being blind-sided!

What is itTime for another reminder – from my first book again: CKD is damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

Imagine being told you had an incurable disease.  What would your first thought be?  Mine was bizarre. I told the nephrologist that my daughter was getting married.  What I didn’t tell him because I was so shocked at this diagnose is that I thought it meant I was going to die very soon, but I couldn’t allow that because I wanted to be at her wedding.

By the way, that’s where my CKD Awareness activism comes from. I didn’t want any of us to think we were under threat of imminent death once we were diagnosed.  I’d rather explain how to get tested (Eighth leading cause of death in the U.S.) and – #SlowItDownCKD – slow down the progression of the decline of your kidney function.

Let’s take a look at over countries.  This is from Kidney Health Australia as of May this year at http://www.kidney.org.au/kidneydisease/fastfactsonckd/tabid/589/default.aspx

HOW MANY PEOPLE HAVE CKD?

  • Approximately 1.7 million Australians (1 in 10) aged 18 years and over have indicators of CKD such as reduced kidney function and/or the presence of albumin in the urine.
  • Less than 10% of the people with CKD are aware they have this condition.
  • This means over 1.5 million Australians are unaware they have indicators of CKD.

Unhealthy%20KidneyWHO IS AT INCREASED RISK OF CKD?

  • 1 in 3 Australians is at an increased risk of developing CKD.
  • Adult Australians are at an increased risk of CKD if they:
    • have diabetes
    • have high blood pressure
    • have established heart problems (heart failure or heart attack) and/or have had a stroke
    • have a family history of kidney disease
    • are obese (Body Mass Index BMI – more than or equal to 30)
    • are a smoker
    • are 60 years or older
    • are of Aboriginal or Torres Strait Islander origin

Notice their statistics are similar to ours, but there are two more are higher risk groups.

IMG_1398

“In 2013, nearly one million people died from chronic kidney disease. While this represents less than 2 percent of all deaths globally, it is a 135 percent increase from the number of chronic kidney disease-related deaths in 1990.

While the global increase in chronic kidney disease-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of chronic kidney disease-related deaths among people ages 15 to 49 since 1990.”

The quote above is from Humanosphere at http://www.humanosphere.org/science/2015/01/visualizing-the-rise-of-chronic-kidney-disease-worldwide/ and is related to The Global Burden of Disease Study.

So you see, we are not alone.  Nor are we living under a death sentence. We can spread awareness of Chronic Kidney Disease and educate those diagnosed as to how to slow down the progression of the disease.

Kidney ArizonaTalking (I know, I know, writing) about this, The National Kidney Fund of Arizona will be holding a Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This includes free blood and urine testing, which is evaluated onsite using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Oh, one last thing. Have you heard about P2P’s Chronic Illness Buy & Sell page on Facebook at https://www.facebook.com/groups/P2PBuy.Sell/ ? It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

A Connection You Can Do Without

McKee You know how you run into people you used to know every once in a while. That’s exactly what happened for me… but we discovered we had chronic disease in common. That’s why this one’s for Jeanne, a former colleague who is highly involved in spreading awareness of Scleroderma, just as I am of Chronic Kidney Disease.  Just as we have a connection, so do Scleroderma and Chronic Kidney Disease. (Cool way to slide into today’s topic, isn’t it?)

According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/definition/CON-20021378, scleroderma is

a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, handsinternal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.

Did you catch “such as blood vessels” and “internal organs” in that definition? And that there’s no cure? Are you beginning to see the connection?

Book CoverOn page 129 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I’ve defined an ACE inhibitor as “A blood pressure medication that lowers protein in the urine if you have CKD.”

So ACE inhibitors are helpful in CKD, but – as you’ll soon read – harmful in Scleroderma. We’ve probably all been in the position of having to choose the least harmful treatment, rather than the most helpful and here it is again.

The Scleroderma Care Foundation at http://www.sclerodermatt.org/articles/better-health/204 tells us:

Exposure to angiotensin-converting enzyme inhibitors prior to the onset of renal crisis in patients with Scleroderma increases the risk of death, according to 1-year findings from the prospective observational International Scleroderma Renal Crisis Survey.

I went to Scleroderma.Org for this chart to help us understand which type of Scleroderma affects the kidneys.types-scleroderma-chart

We can see that Systemic scleroderma is the one that we, as CKD patients, need to pay attention to.  The following is also from Scleroderma.Org.

Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body.

I’m sure you caught “kidneys” in that definition.

Well, what about symptoms?  No one seems to know what causes Scleroderma, but maybe there’s more information about the symptoms. WebMD at http://www.webmd.com/arthritis/understanding-scleroderma-symptoms had this one covered.

  • Swelling, stiffness, or pain in the fingers, toes, hands, feet, or face
  • Puffy skin
  • Discolored skin
  • Fingers and toes that react strongly to cold — they may look white and hurt. This is called Raynaud’s phenomenon.
  • Red spots on the fingers, palms, face, lips, or tongue. These are called telangiectasias. They happen when tiny blood vessels are widened.
  • Ulcers or sores on fingertips, knuckles, or elbows
  • Fatigue or feeling tired
  • Shortness of breath, caused by heart or lung damage
  • Problems digesting food — for example, heartburn, trouble swallowing, or food moving slower than usual through your system

Some of the latter symptoms may be the same as those for CKD, but this does not automatically mean you have CKD…or Scleroderma for that chartmatter.  See your doctor to be tested for each if you have CKD and think you’re developing Scleroderma or vice-versa.

Now there’s another question.  What is the testing for Scleroderma? Our old friend Lab Tests Online at https://labtestsonline.org/understanding/conditions/scleroderma/start/3 offered a complex answer to this question.  Below are the usual tests, but there are groups of others to determine which organs are affected, the severity of the disease, the type of Scleroderma, etc.

A battery of tests is performed to detect the presence or absence of autoantibodies that are generally associated with the diagnosis of scleroderma. They include:

So now we know what Scleroderma is, how it can be determined if you have it, what type you have if you do, and how it may be connected to CKD. By the way, to date, there is no way of preventing this disease.

Now the biggie.  What can you do about it? Time to check with MedicineNet at http://www.medicinenet.com/scleroderma/page4.htm#what_is_the_treatment_for_scleroderma

Treatment of scleroderma is directed toward the individual features affecting different areas of the body.

Aggressive treatments of elevations in blood pressure have been extremely important in preventing kidney failure. Blood pressure medications, particularly the angiotensin converting enzyme (ACE) inhibitor class of drugs, such as lisinopril, are frequently used.

scleroderma-systemic-sclerosis_3See what I mean about choosing the medication that prevents the most harm rather than one that does the most good?

While research is ongoing, there are support groups for Scleroderma patients just as there are for CKD patients, although I wasn’t able to find one for sufferers of both diseases. The Scleroderma Foundation at http://www.scleroderma.org/site/PageServer?pagename=chapter_locator has an interactive map with addresses of in person support groups. Online, there’s Dailystrenth.org at http://www.dailystrength.org/c/Scleroderma/support-group, as well as a Facebook page at https://www.facebook.com/pages/Scleroderma-Support-Group/498039106944584. Of course there are others, but these might be the best places to start if you’re looking for support groups.

I am sitting here writing my blog in the midst of a post vacation cold that’s taking three weeks to run its course. Ah, the joys of having a compromised immune system (She wrote sarcastically.). After writing this blog, I’m feeling very lucky that this is all I’m dealing with as a result of my CKD.IMG_1398

Until next week,

Keep living your life!

I Saw It!

I am so excited!  I watched my kidneys produce urine in live time.  Location of Kidneys

I know, I know: slow down.  Here’s the back story. Remember I wrote about having a bladder infection for the first time in about five years? During consultation with my primary care physician (PCP) about which antibiotic was safe for me, she pointed out that I had taken Ciprofloxacin before with no ill effects and that it was kidney safe. This is a  medication used to kill the bacteria causing an infection.

Okay, I felt comfortable taking it again without speaking to my nephrologist.  However, the 250 mg. twice a day I ingested for five days didn’t do the trick. I waited one day after finishing the prescription and then tested my urine with the same test strips I wrote about in May 25th’s post…and got the same positive results for leukocytes: elevated, which meant infection.

bladderBack to my PCP for more testing. After an in office urine test also showed leukocytes, Dr. Zhao ordered the urine sample be sent to the lab to be cultured, and both a renal and a bladder ultrasound for me. Both the ultrasounds came back normal. She is a very thorough doctor, especially when it comes to my Chronic Kidney Disease or anything that might affect it.  It is possible for infection to move up to the kidneys from the bladder. Luckily, that didn’t happen in my case. Here are the urine culture results from the lab which arrived well into my second regiment of Cipro:

Culture shows less than 10,000 colony forming units of bacteria per milliliter of urine. This colony count is not generally considered to be clinically significant.

Okay, so here I was taking 500 mg. twice a day for my second regiment of antibiotics.  This time I had checked with my nephrologist because of the doubled dosage and taking the second regiment so soon after the first. He gave his approval.

Cipro, like most other drugs, may have side effects.  I hadn’t realized why I was so restless and anxious.  Those are two of the not-so-often-encountered side effects, but I have nothing else to pin these strange (for me) feelings on. My uncustomarily anxiety was causing dissention in the family and interfering with my enjoyment of the life I usually love. After digging deep into possible side effects, I see why.  The funny thing is that all I had to do was read about these possible, but not likely, side effects to feel less anxious and restless.  I had a reason for these feelings; they sad facewould soon dissipate. I could live with that time limited discomfort.

Before taking the ultrasounds, I needed to drink 40 oz. of water – yep, almost two thirds of my daily allowance – and hold it in my bladder for an hour. I started joking with Wendy, the ultrasound technician, as soon as I got into the room.  You know, the usual: Hurry up before I float away, I can’t cross my knees any tighter, that sort of thing.

She was a lovely person who responded with kindness. When she realized I was super interested in what was on the screen, she started explaining what I was seeing to me and turned the screen so I could see what she was seeing. The bladder ultrasound was interesting… and colorful.

But the kidney ultrasound was magic!  I watched as my kidneys produced urine and the urine traveled down to the bladder.  This was real.  This was happening inside my body. And I was watching it in real time.

What is itIn What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I discuss one of the jobs of the kidneys:

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

I was watching the extra water move from my kidneys to my bladder!  I was probably watching the blood being filtered in the kidneys, too, but that was not as clear to me.

Well, what do you know?  It seems the National Kidney Foundation is running a campaign to make the public aware of that, too.  This is what the foundation has to say about the campaign.

The National Kidney Foundation (NKF) has launched a cheeky campaign to promote kidney health and motivate people to get their urine screened.

EverybodyPees is an irreverent, educational animated music video plus a website (www.everybodypees.org) that focuses on the places people pee. EverybodyPees_PostersV3_Page_5The number one goal of the campaign is to link one of the kidneys’ primary functions — the production of urine — to overall kidney health. Pee is important because urine testing can reveal the earliest signs of kidney damage.

“Our research has shown that half of Americans don’t understand that healthy kidneys are responsible for creating urine,” said Kevin Longino, interim CEO of the National Kidney Foundation. “Urine also happens to hold the key to catching kidney disease, especially among the 73 million Americans who are at risk. The message may be unconventional, but it is educational and actionable – get your urine checked for kidney health.”

Kidney disease is at an alarming proportion in the United States. Over 26 million American adults have kidney disease and most don’t know it.  More than 40% of people who go into kidney failure each year fail to see a nephrologist before starting dialysis — a key indicator that kidney disease isn’t being identified in its earliest stages.Healthy%20Kidney

“People aren’t getting the message that they can easily identify kidney disease through inexpensive, simple tests,” said Jeffrey Berns, MD, President of the National Kidney Foundation. “Keeping kidneys top-of-mind in the restroom will hopefully remind people that they should be asking about their kidneys when they visit their healthcare professional, especially if they have diabetes, high blood pressure, a family history of kidney failure, or are over age 60.”

NKF-logo_Hori_OBEverybodyPees is NKF’s first attempt to tackle a serious national health problem from a relatable, consumer angle. The campaign was produced in collaboration with Publicis LifeBrands Medicus.

“We are flipping public health education messaging on its head –using humor to get our message across and foregoing scare tactic messaging” Longino said. “We’re going out on a limb with our core message on urine testing, but we need to take risks if we’re going to alter the course of kidney disease in this country.”

Being who I am, I prefer ‘urine’ to ‘pee,’ but that wouldn’t be half as catchy, would it?

Consider The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 as bathroom reading while you’re urinating – uh, peeing – so we can get some more reviews. And always, let us know about any new CKD books you discover.

Until next week,Part 2Digital Cover Part 1

Keep living your life!

 

Going Mental

Ilana Contest Winner!  Congratulations to Ilana Lydia for winning the photo contest for the Weirdest Place to read one of my CKD books.  She took a little poetic license and had her cat read the digital version on her computer.  I never would have thought of that… or my Bear’s reading one of the books while welding or Abby’s reading one while walking the tightrope and twirling a hoola hoop.  (They were disqualified because they’re immediate family.)

Thanks for all the entries, you creative readers, you. Ilana, please contact me privately so I can send you a brand new, personally inscribed copy of The Book of Blogs: Moderate Chronic Kidney Disease, Part 1.  If any of you have a contest idea you’d like to have me run, just let me know.  This contest idea was from avid reader, Geo DeAngelo.  Thanks again, Geo.DIGITAL_BOOK_THUMBNAIL

Aha, looks like there’s a free Path to Wellness health screening coming up. This one is in Mesa, Arizona, at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30. That’s a Saturday. There are two requisites here: you must be over 18 and have a nuclear family member with diabetes, heart disease, or kidney disease OR a history of diabetes or high blood pressure yourself.

Path to Wellness screenings include the screening itself, immediate blood and urine results, doctor consult, onsite health education, 6 week Healthy Living Workshops, and help finding a family doctor.  Just call the National Kidney Foundation of Arizona for an appointment at 602 840 1644 for English speakers or 602 845 7905 for those who would prefer Spanish.NKF-logo_Hori_OB

Have I mentioned enough times that this screening is free?  Early diagnose is important so you can slow down the progression of the disease. You can’t be treated for the disease if you don’t know you have it.  Now you’ve just lost the ‘I don’t have the money for that’ excuse.  Be good to yourself and get screened.

Now, about that blog title.  You know when you have a preconceived notion that you seem to make things come out that way?  Okay, we all go for periodic blood tests.  The procedure is called venipuncture which simply means puncturing the vein. Since I’m on a cholesterol medication, it’s once every three months for me.  I went for the blood draw on Friday.

There are two phlebotomists at the Lab Corp attached to my PCP’s practice.  One is so heavy handed that it hurts and I have discreetly requested that 1. She not draw my blood and 2. She be told why I made that request.  It turns out this was not news to her, yet she continues to work there. She was not the problem this time.Abby book

The other phlebotomist has the touch of a butterfly and a great deal of personality to boot.  I know if she draws my blood, it’s not going to hurt. My veins are also becoming ‘difficult’ after all these years of blood tests.  They roll, collapse, or seemingly disappear. I just realized these problems are all associated with elderly patients.  Hey, I’m not there yet! Truthfully, some of these problems may have to do with the placement and depth of the needle. If you’re interested, there’s a fairly easy to understand ARO Onsite Training and Consulting (for phlebotomists) site at blood drawhttp://arotraining.com/images/Documents/Venipuncture%20Module%206_Venipuncture%20Complications%20and%20Special%20Circumstances.pdf

Finally, we get to the mental part.  While I knew the preferred phlebotomist wasn’t going to make me hurt – other than the initial pinch – it did hurt. I just didn’t experience the sensation that way. I have a close to the surface vein in my upper left arm and, after palpating but not finding a really good vein in the crooks of either of my elbows or the back of my hands, she decided to use that one… with my blessing.  I’d been wondering why no one ever tried that vein before. Note the size of the bruise this resulted in:IMG_1220

It worked for 1 ½ of the 3 tubes that were needed, then it collapsed.  She knew I’d have a whopping bruise, but I still didn’t feel the pain I should have been feeling according to my past experience of venipuncture and hers.  Why?

Ah, the brain is a marvelous thing. According to About Health at http://pain.about.com/od/whatischronicpain/a/feeling_pain.htm

Special pain receptors called nociceptors activate whenever there has been an injury, or even a potential injury, such as breaking the skin or Bear and bookcausing a large indentation.

Venipuncture, although it is to help keep you healthy, is an injury to the skin and vein.  So have I somehow been manipulating my nociceptors? No, I don’t think so.

There are many sites on the internet that explain how you can use visualization, transference, mental imagery, meditation, and other such techniques to lessen chronic pain. That’s not what I was dealing with. I knew, absolutely knew, I wasn’t going to experience any pain. I usually do some deep breathing, do not look at the site being punctured (wrote a whole blog about that a few years ago), and cracked jokes with the young lady performing the procedure.

In other words, there was no anxiety, no fear, no foreboding, just a simple case of I-have-to-do-this-therefore-I-will-and- I-will-experience-the-pain-as-mildly-annoying. I know. I know. I wish I could do this at the dentist’s office, too.

brainI had expected to offer you loads of scientific information about this from alternative medicine sites, but they all seem to say the same thing I just did.  Over 40 years ago, I was involved with Seagull Mind Training. That was a company (now defunct) that claimed to teach you how to use more of your brain power. I say we are using more, all of us, with the quest into mind/body connection, alternative and complementary medicine, and an overall awareness of our general good health. The difference is that we now accept this as commonplace.

While this is not something I would try with major surgery, you might be surprised at how well it works during your next blood draw.

Poor books seem to get ignored until the very end of my posts lately.  I urge you to share, people, share. If you’ve bought the Kindle version, there is a share program available. You can also ask your library to order copies.

Until next week,

Keep living your life!Digital Cover Part 2 redone - CopyWhat is it

DON’T K.E.E.P. It a Secret

National Kidney MonthHello, Week Two of National Kidney Month.  Surely, you’ve gotten yourself checked for Chronic Kidney Disease by now.  After all, more than 20% of us here in the U.S. have it. That’s 10 million people. Mind boggling, isn’t it. Here’s the kicker: that’s as of 2010 – five years ago now – according to The National Kidney and Urologic Disease and Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/#3

But, wait, it gets worse. If you, like me, are over 50, your risk has increased.  Over 70 {Awk!  That’s only two years away for me.}, it increases even more.  What hurts for me is that so many people don’t know they have Chronic Kidney Disease. I’ve read statistics placing this at anywhere from 20 to 90%.  Rather than go on again about if-I-had-been-diagnosed-at-stage-1-rather-than-stage-3-I-would-have-had-more-time-to-slow-down-the-progression-of-my-ckd, let’s just say it’s easy to have yourself tested.

I’ve written about just needing a simple blood test and a simple urine test.  You can even have this done via the usual blood tests you already take if you usually take blood tests.  I have my pcp’s and nephrologist’s blood draw orders combined if they fall within two weeks of each other – with my doctors’  blessings. It’s not cheating, folks; it’s one less needle in your arm as I see it.

Well, what about if you don’t have blood tests regularly?  You could ask your PCP to write you orders for this. Most won’t do so without a visit, though.  Let’s say you don’t have the money, or can’t get an appointment early enough.  What then?K.E.E.P.

That’s where K.E.E.P. comes in. The acronym stands for Kidney Early Evaluation Program and is offered by the National Kidney Fund.  According to their website, this is what is offered.

  • Risk Survey

  • Body Mass Index (BMI): Height and Weight Measurements

  • Blood pressure check

  • ACR urine test for albumin (a type of protein) – For individuals at risk only!

  • Free educational materials

  • Opportunity to speak with a health care professional

Notice, no blood test.  Think of K.E.E.P. as a place to begin your kidney education. That risk survey and the urine test for “at risk” individuals are important parts of the program.  Over 50 – go to a K.E.E.P. event. Over 70 – definitely go to one.  These are not the only “at risk” definers, though. Add in the following.

  • Anyone with high blood pressure, diabetes

  • Anyone with a family history of kidney failure

  • African-Americans, Hispanics, Asians, Pacific Islanders and American Indians

  • Individuals who are obese (body mass index of 30 or above)

Now you can see why your BMI is measured and your blood pressure read.   Thank you to the National Kidney Fund at https://www.kidney.org/keephealthy for the above information.  If you’re interested – and I’m sure hoping you are – you can find the locations and dates of these on the upper right hand corner of the same page.  You’ll have to enter your geographical information, but that’s it.

That’s another option, but budgets are being cut all over the place.  So let’s say there’s no K.E.E.P. event near you. What now? How about the Path to Wellness program? What’s that, you say. It’s a partnership between the renal and heart communities for the following purpose according to the website of the Cardio Renal Society of America at http://www.cardiorenalsociety.org/ {The website does seem to be aimed toward medical professionals.}

Public Health Education and Early Detection

Path to Wellness is an integrative community-based screening program addressing the interconnections between kidney disease, heart disease, and diabetes. It encourages utilization of community-based or primary care services and empowering a diverse demographic of at-risk patients to make significant, positive changes in their personal well-being and quality of life.

In Arizona, the Arizona Living Well Institute is also involved in this project.  Dr. J. Ivie, the Director of Patient Services at the National Kidney Foundation of Arizona provides a more patient oriented description of the event.

Path to Wellness has already touched close to 400 Arizonans at risk of diabetes, heart disease and kidney disease by providing education, screening, self-management skills and connection to a medical home.  We are scheduling the first screening event of 2015 on Saturday, March 28th at the Salvation Army KROC Corps Community Center near South Mountain in Phoenix.

By the way, they are calling for volunteers to help out at this program, so please contact Dr. James Ivie via any of these methods if this interests you. I was recently made aware that high school students need to perform community service as a graduation requirement and was wondering if this is applicable if the students are over a certain age.  Again, a question for Dr. Ivie.

Phone:         602.845.7905

Fax:              602.845.7955cardiovascular

Address:      360 E. Coronado Rd. #180

                      Phoenix, AZ 85004

Email:          www.azkidney.org

Digital Cover Part 1I like to perform community service, too.  In this case, that service is for my kidney community.  Hmmm,  World Kidney Day is March 12. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now available in both print and digital versions on Amazon.com.  The logical connection between the two for me is that World Kidney Book will be the day this book is free.  Remember I offered The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 free on February 2nd because it was my birthday? {Doesn’t every author offer their books free on their birthday?} This works the same way.  You just order the book.Part 2

Here’s how my mind works: I have dissolved in laughter because I just realized I was wondering if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is feeling left out because there’s never been a freebie day for that book.  I get it!  It’s a book {but it’s my baby.}Book Cover

Whoa!  I’ve been getting calls that the blog address no longer works.  After a little gentle questioning, it came out that the callers were using the old address: https://gailrae.wordpress.com.  If you use that address, you’ll receive the following message:

“gailrae.wordpress.com is no longer available.  The authors have deleted this site.”  No I didn’t! I just changed the name to gailraegarwood.wordpress.com.  I’ll consider this a reminder to myself to leave well enough alone.

I followed a forum user’s advice to simply change the name, not realizing all the old blogs will be deleted.  I thought the site was being deleted and you would be redirected to the new address for all the blogs.  Silly me.  I am extremely thankful The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 were published before this mini catastrophe,  but am still not happy with it.  Oh well. Might as well choose it since I have to do the work anyway.

Hang on while I recreate the blog.   Well, actually, if you’re reading this, it’s already recreated.  Yay!

Until next week,

Keep living your life!

They’re Not Twins

Kidney ArizonaMarch is National Kidney Month here in the United States.  That makes it an even better time to have yourself screened for Chronic Kidney Disease. 28 million people have it and quite a few of them don’t know it.  Don’t be one of them.  All it takes is a simple blood test and a simple urine test.

Talking about blood and urine tests, I mentioned in passing on one or two of my blogs that your values and the reference range values on your lab tests may differ according to the lab you use, and loads of physical factors such as: being adequately hydrated, having voided your bladder, having gotten enough sleep, even how the specimens were handled.

I was in the unique position of taking these two tests once and then again two weeks later. Had the due date of the tests for each doctor been closer, I might have combined them and had the results of the one set of tests sent to each doctor. But my nephrologist needed his tests two weeks before my appointment, and my primary care physician {pcp} needed hers no less and no more than every three months since she was monitoring my bmpliver for the effect of a medication.

She was checking primarily for my cholesterol levels {which are better than ever and finally all within range, thank you very much!} and included the other tests because she is one thorough doctor. He, my nephrologist, was much more concerned with my kidney function.

The reference range values from the two different labs I used were not twins. For example, Sonora Quest, the lab my nephrologist uses, has the acceptable range for creatinine as 0.60 – 1.40.  But my pcp uses LabCorp. which states that it is 0.57 – 1.00 mg/dL. If you look to the right, you’ll see an older test result using mg/dL.

I wasn’t really sure what mg/dL meant, so I looked it up. According to the Free Dictionary at http://acronyms.thefreedictionary.com/mg%2fdL, this means

Milligrams per Deciliter

That was my reaction, too, so I used the same dictionary for both words used in the definition.  Milligrams means

A unit of mass equal to one thousandth (10-3) of a gram

while deciliter means

100 cubic centimeters

We are talking small here!Book Cover

The results for this test were a little different, too.  On February 10th, it was 1.11, which was not out of range for Sonora Quest.  But two weeks later, it was 1.1 – ever so slightly lower – which was out of range for LabCorp. This is a bit confusing.

Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see if we can shed some light on this. On page 21 {Use the word search if you’re using the digital version of the book.}, I wrote

A higher creatinine result could mean the kidneys were not adequately filtering this element from the blood.

By the way,

Creatinine is a chemical waste product that’s produced by your muscle metabolism and to a smaller extent by eating meat.

Thank you to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/creatinine/basics/definition/prc-20014534 for this clarification.

All I can say is that seemed like earth shattering information when I was first diagnosed with CKD.  Now that it’s seven years late, it just means I have CKD.  It’s sort of like reiterating I have this slow decline in the deterioration of my kidney function no matter which acceptable range we use.

Another difference in value ranges was BUN.  This is your urea nitrogen. Medline Plus at blood drawhttp://www.nlm.nih.gov/medlineplus/ency/article/003474.htm explains

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

This could be a ‘Who cares?’  statement except that the BUN is used to measure your kidney health. Sonora Quest’s acceptable range is 8-25 mg/dL, while my LabCorp’s is 8-27. At the first lab, my value was 22 and at the other, two weeks later, it was 17. Both were in range, but let’s say – just for argument’s sake – my value had been 26.  Would that mean I was out of range?  It would at one lab, but not the other.  I think I just answered my own question as to why I need to have my doctor interpret my lab results even though I can read them myself.

Well, what makes these levels go up or down? Thank you WebMD for this simple to understand answer.

If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Aha!  We know that as CKD patients we are restricted to five ounces of protein a day. Why combine an inability to “remove urea from the blood normally” with an overabundance of protein?

Hopefully, some of the questions you didn’t even know you had were answered today.

Part 2I’m sorry if you missed out on your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  by being the third buyer during the last part of February. While I’ve used up my freebies for that book, I’m now working on a free day for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 on World Kidney Day, March 12.  Keep watching for more news about this as Amazon and I keep working on it.

Again, if you’d like to join us for the Kidney Walk on April 19 at Chase Stadium in Phoenix, why not go to the Walk’s website at http://kidneywalk.kintera.org/faf/home/default.asp?ievent=1125145 and join our team, Team SlowItDown. We’ll be looking forward to seeing you there.

Until next week,

Keep living your life!

Urine or You’re Out

How odd that urine is so important to us.  Make no mistake; if you have Chronic Kidney Disease, you’re always keeping an eye on it.  I’m pretty sure you all know about the color chart to see if you’re hydrating enough.  If you don’t hydrate enough, your kidneys can’t do their jobs as well… and they’re already struggling to do them. This is the least complicated urine hydration chart I’ve seen.urine hydration

Of course, I’ll go back to remind you of just what the jobs of your kidneys are.  My source?  My first book about our disease, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 7.

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

These two organs, the master chemists of our bodies, have several functions: regulating the fluid balance in the body, providing vital hormones, producing erythropoietin, and producing the renin that regulates blood pressure. This is why CKD patients need to be careful about sodium, Book Coverpotassium, chloride, calcium, magnesium, and phosphates. Your nutritionist may not even mention magnesium to you since this constitutes only 1% of extra cellular fluid. Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

Wait a minute; I think we need to go even further back.  A picture of the urinary tract would probably be helpful here, too.urinary

Okay, now I can start writing about your urine. I’m pretty sure I mentioned in an earlier blog how disturbed I was to be one point over the normal range for microalbumin. Here’s a definition of just what that is.

Micro, or very small amounts, of albumin in the urine. Ur stands for urine. {As in the test for proteinuria.} Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.

Read that last sentence again. There seems to be a Catch 22 here. As a Chronic Kidney Disease patient for the last seven years, this has never shown up in a urine test for me before. I am including both the 24 hour variety and the random {Dipstick} variety in that never.

So now we know about microalbumin.  What about proteinuria?  Notice the ur in the word.  We just learned that means urine.  This is another indication of kidney disease.  I have never been out of acceptable range for this.  According to WebMd at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

Healthy kidneys do not allow a significant amount of protein to pass through their filters. But filters damaged by kidney disease may let proteins such as albumin leak from the blood into the urine.

Glomerulus-Nephron 300 dpi jpgFilters?  This diagram of the glomerulus may help.

If albumin is a protein, are proteinuria and microalbumin the same? Well, no.  Health Communities at http://www.healthcommunities.com/proteinuria-and-microalbuminuria/overview-of-proteinuria.shtml tells us

Albumin is particularly useful in absorbing bodily fluid into the blood. Because the albumin molecule is relatively small, it is often among the first proteins to enter the urine after glomeruli are damaged. Therefore, even minor kidney dysfunction is detectable with proper diagnosis of microalbuminuria.

All right, got it?  Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein. Once upon a time, you always needed to conduct a 24 hour urine test for this information, but…

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.banner-nihlogo

And that is where creatinine comes in and why you need to be aware of your creatinine levels in your urinalysis. By the way, blood tests will also report the amount of albumin and creatinine in your blood. This could promote another discussion, one about Blood Urea Nitrogen tests, but it would be out of place here since that’s not part of the urine.

As you can see this is a complex topic.  You need to be aware of what the color of your urine can tell you about your hydration – whether or not you have Chronic Kidney Disease – and monitor both your microalbumin and proteinuria, as well as your creatinine.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsAnother complex topic is editing the new print books.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 aren’t quite ready.  I’m working with a new publisher and we’re just getting to know each other’s styles.  The good part about that is you get two books for the price of one on Amazon.com digital until the print books are ready.  Look for The Book of Blogs: Moderate Stage Chronic Kidney Disease.  Once the print copies are ready, I promise a day of the digital copy for free… if that perk is still available to me at that time.

I don’t know about you, but I get just as tired from overdoing it for good things as well as bad.  This weekend was a test of how well I could adhere to my renal diet with date day, a memorial dinner, and a celebratory champagne brunch.  Being human, I blew it on ice cream.  My pounding heart and lightheadedness have convinced me: no more sugar treats!  Although, some of my non-CKD friends report the same symptoms upon a sugar overdose…

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!

Flanked by the Pain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life.

Sunshine and Superwoman

sad womanToday is just one of those days: Bear’s car is in the shop so I got up early to take him to work, I turned on the dishwasher and nothing happened, I posted what I thought was a non-political message and got a political rant in return, answered a text only to find that my childhood friend thought I was ignoring her.  I’ve got a pretty happy life, so this was a disconcerting start of the day to say the least.

And then I opened the lab results for yet another blood test.  The one I wrote about two weeks ago was from August; this one is from last week. Should have saved it for tomorrow.

While the out of range results weren’t that much out of range, they were out of range.  Since this is one of those days, all of a sudden this became of great concern to me.

The Vitamin D, 25-Hydroxy, Total was 28.6 instead of within the 30.1 -100 normal range.  It would probably help you understand my mystification if I let you know that I’ve been taking 2000 mg. of vitamin D daily for several years.

I went running right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to find out why this is important.  Thank goodness, I have my office copy!  How could anyone memorize everything they need to know about their health, I wonder.Book Cover

This is what I wrote about vitamin D (page 48):

  • The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use.
  • Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy.
  • Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together.
  • Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.
  • Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.

I have been itchy lately, but since my phosphate levels have never been out of range, I concluded it was just dry skin due to our low to nil humidity here in Arizona.  Maybe it’s not.  We’d been keeping my calcium levels low – but in range – since a bout with kidney stones several years ago. I also definitely stay out of the sun, another source of vitamin D, since a

sun-graphic1pre-cancerous face lesion. I’d had a bone density test recently and that was just fine, but had I been doing all the wrong things for my kidney health in protecting myself from kidney stones and melanoma?

Something was nagging at me about vitamin D, so I turned to the glossary of my book (page 136) and that’s where I found it:

“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

Affects the immune system.  But how?  Science Daily at http://www.sciencedaily.com/releases/2010/03/100307215534.htm provided the answer I sought:

“Scientists have found that vitamin D is crucial to activating our immune defenses and that without sufficient intake of the vitamin – the killer cells of the immune system — T cells — will not be able to react to and fight off serious infections in the body. The research team found that T cells first search for vitamin D in order to activate and if they cannot find enough of it will not complete the activation process.”

How did I miss that?  And how many others knew that vitamin D didn’t just build strong bones as we’d been taught in primary school?

nsaidsI imagine my nephrologist will up my vitamin d dosage when I see him next week, but I still can’t handle the sun or take calcium supplements.  Maybe there’s some food that can provide vast quantities of this vitamin.

But no, according to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/:

“Vitamin D is a fat-soluble vitamin that is naturally present in very few foods, added to others, and available as a dietary supplement.”

Well, I wanted to know what those foods were even if they could only provide 20% of the needed vitamin d at most.  I clearly remembered salmon, tuna, and egg yolks, but what else?  Mushrooms, of course.  And???

I had to turn to the internet for more suggestions. Fit Day at http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-foods-rich-in-vitamin-d.html informs us that milk, cereal, and even orange juice are vitamin d fortified. For me, that’s a joke.  I’m lactose intolerant, don’t like cereal, and o.j. has too much calcium in it.

I like fish, but two to three times a week?  I’m not sure I want to spend my five ounces of protein that way so often during a week.  I don’t care for eggs much, but am willing to eat them once a week just to eat something healthy. Mushrooms are really tasty, but my ¼ cup doesn’t go very far.

You know, just from moving myself to write, it doesn’t seem like such a bad day after all.IMG_0058

Which leads me to a thought I want to share: action is the road out of unhappiness.  I’m sure someone has thought of that before, but I own it now.  To that end, I’m working on The Book of Blogs and two other long time writing projects as well as having committed myself to Landmark Worldwide’s Wisdom Course.

Of course I still take the time to exercise (ugh!), sleep, and rest, but these projects are fun… and they make me happy.  We are capable of so much more than we think we are.

Until next week,

Keep living your life!

It’s All Connected

About those random posts you may be receiving from me… I am transforming the blog into a book as promised.  However, I don’t really know what I’m doing and am learning on the job, so to speak.  I Kidney Book Coverwouldn’t be at all surprised if you heard me yelling, “OH, NO!” (and worse) at least once a day from now until the process is complete.  I guess you’re bearing witness to my learning process. Boy, am I ever grateful you’re a patient lot!

Now, what I really wanted to write about. I got a call from my primary care physician telling me that while I had improved my BUN, Creatinine, BUN/Creatinine Ratio, LDL, and eGFR levels on my last blood test, the Microalbumin, Urine, Random value was abnormal at 17.3. I checked online to make certain I had heard her correctly.

Dr. H. Zhao practices at Deer Valley Family Medicine here in Phoenix.  The practice started using a site to report your results as soon as they’re available, sometimes the next day.  I wonder why I got that call at all when this process is in place.

When I finally finished congratulating myself for all these improvements, I started to question why the Microalbumin value was out of range.  I knew it hadn’t been out of range last year, but I did have Chronic Kidney Disease.  That in itself would have meant it would be out of whack, wouldn’t it?

Here we go again.  I pulled out my trusty copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and turned to Chapter 5, “What Flows Through You,”  The Random Urine Tests,  number 9299 on page 52 (Honestly? I used the word search function for the digital book, even though I had the print copy in front of me.  It’s just plain easier!) and found:

“tests for micro, or very small amounts, of  albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so theBook Cover

  albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Of course I wanted more.  We all know micro from micro-mini skirts (Are you old enough to remember those?) and microscope.

Wait, if protein in the urine “may be an indication of kidney disease” – which I have – why was this a problem?  Or was it a problem?

Both high blood pressure (which I do have) and diabetes (which I don’t) could be the cause since both may lead to the proteinuria (protein in the urine, albumin is a protein as mentioned above) which may indicate CKD. Microalbuminia could be the first step to proteinuria.

But, as usual with medical conditions, it’s not that black and white.  I scurried over to our old friend WebMD at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine to look for other risk factors and found these:

  • Obesity
  • Age over  65
  • Family history of kidney disease
  • Preeclampsia (high blood pressure and proteinuria in pregnancy)
  • Race and ethnicity: African-Americans, Native Americans, Hispanics, and Pacific Islanders are more likely than whites to have high blood pressure and develop kidney disease and proteinuria.

While I’m well past child bearing, I’m also over 65 and, ummm, (how’s this for hedging?) clinically obese.  Does that mean proteinuria is to be my new norm?

NIHMaybe there’s something more I can do about this.  According to Skip NavigationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES‘ National Kidney and Urologic Diseases‘ Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/

“In addition to blood glucose and blood pressure control, the National Kidney Foundation recommends restricting dietary salt and protein. A doctor may refer a patient

to a dietitian to help develop and follow a healthy eating plan.”

 This is nuts!  I have CKD.  I already restrict myself to five ounces of protein a day. I’ve abolished table salt from the house and watch the salt content in the foods I eat. I’m handling my blood pressure with Losartan/HCTZ. (See the next paragraph.) I haven’t progressed from microalbuminuria to proteinuria, yet I’m still doing more damage to my body.

MedicineNet at http://www.medicinenet.com/losartan_and_hydrochlorothiazide/article.htm explains the Losartan/HCTZ very well:blood pressure 300dpi jpg

“Losartan (more specifically, the chemical formed when the liver converts the inactive losartan into an active chemical) blocks the angiotensin receptor. By blocking

the action of angiotensin, losartan relaxes the muscles, dilates blood vessels and thereby reduces blood pressure….Hydrochlorothiazide (HCTZ) is a diuretic (water

pill) used for treating high blood pressure (hypertension) and accumulation of fluid. It works by blocking salt and fluid reabsorption in the kidneys, causing an

increased amount of urine containing salt (diuresis).”

Uh-oh, that leaves blood glucose, which has never been high for me.  However, my A1C has been high since this whole CKD ride has started.A1C

Let’s back track a little. The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585  tells us:

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in

red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I don’t have diabetes…yet.  It’s becoming clear that I will – in addition to worsening my CKD – if I don’t pay even more attention to my diet and become more stringent about sore kneeexercising.  It’s sooooo easy to say not today when the arthritis rears its ugly head…or knee.

It’s been said there’s no way to do it, but to do it (by me, folks.  Ask my children.) So now I need to take my own advice and get back to the stricter enforcement of the rules I know I need to live by.  After all, they let me live.

If you ever needed proof that the body is an intricate thing with all its part being integrated, you got it today.

Until next week,

keep living your life!