I’ll Sleep When I’m Dead

How many times have you said this (before your diagnose) to those who told you to slow down, take it easier, don’t rush so, take some time for yourself, etc.? As a younger person, I was a high school teacher, an actor, a writer, and – most importantly – a mother, actually a single mother once my daughters were double digit aged.

Guess what. You may sleep when you’re dead, but you need to sleep now before you hasten the time to your death. What’s that? You get enough sleep? I thought I did, too, but I wasn’t getting the kind of sleep I needed.

Why do we need sleep anyway? I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for some answers. The first reason I stumbled across was in an article from The Journal of The American Society of Nephrologists:

“Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.”

Ramon C. Hermida, PhD is the director of the bioengineering and chronobiology labs at the University of Vigo in Spain.

Hmmm, I take medication for hypertension… and I take it at night. I see that I need to sleep for it to work most effectively. I’ve known this for years and written about it. The point is you may need to know about it.

Then I started wondering if I were correct in the amount of sleep I thought I needed. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 was helpful here:

“How much sleep is enough sleep anyway? According to Dr. Timothy Morgenthaler of The Mayo Clinic site, seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

• Pregnancy. Changes in a woman’s body during early pregnancy can increase the need for sleep.
• Aging. Older adults need about the same amount of sleep as younger adults. As you get older, however, your sleeping patterns might change. Older adults tend to sleep more lightly and for shorter time spans than do younger adults. This might create a need for spending more time in bed to get enough sleep, or a tendency toward daytime napping.
• Previous sleep deprivation. If you’re sleep deprived, the amount of sleep you need increases.
• Sleep quality. If your sleep is frequently interrupted or cut short, you’re not getting quality sleep. The quality of your sleep is just as important as the quantity.”

While I’m not pregnant (and will become a medical miracle if I become pregnant), all the other circumstances do apply to me. During Shiva after my brother’s death, there was very, very little sleeping going on. Hence, sleep deprivation. I’m aging and my sleep quality is not great right now. Those are my circumstances, but they could be yours. Are you getting enough sleep?

Sometimes, simply having Chronic Kidney Disease can be the source of sleep problems. This is something I’ve written about several times. Here’s an excerpt from SlowItDownCKD 2015 about just that:

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

You can read the entire article at http://www.medscape.com/viewarticle/805342, although you will have to register for a free account.

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep. I took a comment from one study, a sentence from another, and unilaterally decided this was the reason. I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion….”

Oh, right: you need a definition of segmented sleep. Wikipedia provides one:

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

The National Institutes of Health at https://www.nhlbi.nih.gov/health/health-topics/topics/sdd/why sums up our need for sleep beautifully:

“Sleep plays an important role in your physical health. For example, sleep is involved in healing and repair of your heart and blood vessels. Ongoing sleep deficiency is linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke.

Sleep deficiency also increases the risk of obesity. For example, one study of teenagers showed that with each hour of sleep lost, the odds of becoming obese went up. Sleep deficiency increases the risk of obesity in other age groups as well.

Sleep helps maintain a healthy balance of the hormones that make you feel hungry (ghrelin) or full (leptin). When you don’t get enough sleep, your level of ghrelin goes up and your level of leptin goes down. This makes you feel hungrier than when you’re well-rested.

Sleep also affects how your body reacts to insulin, the hormone that controls your blood glucose (sugar) level. Sleep deficiency results in a higher than normal blood sugar level, which may increase your risk for diabetes.

Sleep also supports healthy growth and development. Deep sleep triggers the body to release the hormone that promotes normal growth in children and teens. This hormone also boosts muscle mass and helps repair cells and tissues in children, teens, and adults. Sleep also plays a role in puberty and fertility.

Your immune system relies on sleep to stay healthy. This system defends your body against foreign or harmful substances. Ongoing sleep deficiency can change the way in which your immune system responds. For example, if you’re sleep deficient, you may have trouble fighting common infections.”

I think I need to go to sleep now.

Until next week,
Keep living your life!

Long Term, Short, and your Heart

I received some comments about Acute Kidney Disease (AKI) in the midst of all the support after last week’s blog. It seems this is a new topic for so many of us. By us I mean Chronic Kidney Disease (CKD) patients. I know at stage 3, my nephrologist never brought this up to me.

Ah, but I remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

On the very first page of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote “…chronic is not acute. It means long term, whereas acute usually means quick onset and short duration.”

All those years of teaching English in high school and college paid off for me right there in that sentence.

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

“Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease.” …

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

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

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD. Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

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

Has your primary care doctor recommended a daily low dose aspirin with your nephrologist’s approval? This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.

Let’s see what more we can find out about this dastardly triumvirate.

The National Kidney Foundation at https://www.kidney.org/atoz/content/AcuteKidneyInjury offers this information about AKI.

Acute kidney injury (AKI) is a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days. AKI causes a build-up of waste products in your blood and makes it hard for your kidneys to keep the right balance of fluid in your body. AKI can also affect other organs such as the brain, heart, and lungs. Acute kidney injury is common in patients who are in the hospital, in intensive care units, and especially in older adults.

You did catch that it can affect the heart, right?

Well, what about the heart and its diseases?

This is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056.

The term “heart disease” is often used interchangeably with the term “cardiovascular disease.”

Cardiovascular disease generally refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as those that affect your heart’s muscle, valves or rhythm, also are considered forms of heart disease.

Many forms of heart disease can be prevented or treated with healthy lifestyle choices.

Maybe a reminder of what CKD is will help, too. WebMD at http://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-topic-overview#1 offers this simple, comprehensive explanation.

Having chronic kidney disease means that for some time your kidneys have not been working the way they should. Your kidneys have the important job of filtering your blood. They remove waste products and extra fluid and flush them from your body as urine. When your kidneys don’t work right, wastes build up in your blood and make you sick.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

Each of your kidneys has about a million tiny filters, called nephrons. If nephrons are damaged, they stop working. For a while, healthy nephrons can take on the extra work. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you healthy.

My head is spinning. One could – or could not – lead to another which, in turn, could – or could not – lead to the third. There’s no strict order and there’s no way of knowing until you actually have it. My layperson’s suggestion? Take good care of your kidneys.

Until next week,
Keep living your life!

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!

Two Masters

A friend of mine, the one I mentioned when I wrote about renal sally ports, recently has had a relapse. Yep, he neglected to take his medications at the proper times. That can cause havoc for mental illness, especially bipolar disorder. It got me to thinking. What if my friend had Chronic Kidney Disease AND bipolar disease? How could he handle both diagnoses at the same time?

Let’s start at the beginning. There are certain drugs I take in the hopes of delaying dialysis as long as possible. One of those is the ACE Inhibitor I’d been taking for hypertension for about two decades before I was even diagnosed with CKD. Here’s the definition from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.”

It works by both relaxing the blood vessels and reducing the blood volume. This, in turn, lowers your blood pressure which, in turn, lowers your heart’s oxygen needs. And the problem for my friend would be? Well, maybe just remembering to take the medication each day.

However, according to MedicineNet.com at http://www.medicinenet.com/ace_inhibitors/page2.htm,
The most common side effects are:
• Cough
• Elevated blood potassium levels
• Low blood pressure
• Dizziness
• Headache
• Drowsiness
• Weakness
• Abnormal taste (metallic or salty taste)
• Rash
• Chest pain
• Increased uric acid levels
• Sun sensitivity
• Increased BUN and creatinine levels

Did you notice increased uric acid levels, and increased BUN and creatinine levels? This could be a dicey medication for CKD patients if they did not heed their doctor’s advice once (s)he has evaluated the patient’s labs. That’s the problem here: not having the ability to be a compliant patient during a bipolar episode.

I was also prescribed a drug for cholesterol, a statin. This drug inhibits (the word of the day) an enzyme in the liver that produces lipids. As reported in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:
According to Dr. Dr. Robert Provenzano, chief of nephrology at St. John Hospital and Medical Center in Detroit, “…LDL, bad cholesterol, directly impacts acceleration of Chronic Kidney Disease.” One of the possible side effects is of this drug is Type 2 Diabetes. All I can say about that is thank goodness these side effects are not the norm.

Here’s the problem: statins have to be taken at night. That’s when the body produces cholesterol. Again, can my friend be compliant during an episode? What about the drugs he already takes? Are they going to somehow interfere with these common drugs for CKD?

Lithium is the usual drug for him. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:
“There were two Plenary Sessions I attended at the Southwest Nephrology Conference I attended last weekend. It was at the second one, ‘Psychiatric issues in kidney patients’ that I suddenly sprang to attention. What was this man saying? Something about lithium doubling the risk for Chronic Kidney Disease? And I was off… how many psychiatric patients knew that fact? How many of their caretakers knew that just in case the patient was not responsible at the time of treatment? What about children? Did their parents know? Was a screening for CKD performed BEFORE lithium was prescribed?”

Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend:

“What is lithium?
Lithium is a common medicine used to help calm mood for treating people with mental disorders. Since such disorders need lifelong treatment, long-term use of lithium may be harmful to organs, such as the kidneys.

How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

I keep reminding myself that the word “may” appears over and over again. Yet, since my friend either wasn’t taking his medication at all or not taking it as prescribed, it wasn’t working…and he is still at risk for CKD.

I found this tidbit on Drugs.com at https://www.drugs.com/interactions-check.php?drug_list=1477-0,1489-0, ACE Inhibitors: “…may increase the blood levels and effects of lithium. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications.” Wait. So you need an ACE Inhibitor if you have CKD, but it can interfere with the lithium you take if you’re bi-polar. And statins? While I couldn’t find any interactions, I did find the caution that there may be some and to check with your doctor. I am aware he takes an anti-depressant, but in researching, have discovered there are many that are safe to take with CKD.

My friend usually goes to his medical appointments, but he neglects to mention certain symptoms and sometimes has trouble telling reality from non-reality. Does he know whether his doctor has warned him about the higher risk of CKD or not? Does he know that he may develop a form of diabetes from long term use of lithium? Does he know that if even one of his parents has CKD, his risk is doubled yet again?

Tomorrow is July 4th, the day the United States celebrates its independence from the tyranny of England. Where is my friend’s independence from the tyranny of his mental illness? The English and the United States have learned to peacefully share our existences (right, English readers?). Here’s hoping my friend can learn to peacefully share his existence with bipolar disorder… and CKD should he develop it. Heaven forbid.

Until next week,
Keep living your life!

Gluten Free

“…I started GF mid-April & my June lab work showed significant improvement. My next lab work is not until August, but I feel & look so much better, and because my BP dropped so much, my nephrologist took me off hydrochlorothorozide and reduced irbesartan from 300 to 75.” This is a small part of the message I received from a reader… and it intrigued me.

I take hydrochlorothiazide.  I know I looked it up at the time it was prescribed, something about fluid. Hmmm, it wouldn’t hurt to look it up again to refresh my (and your) memory. According to Medicinenet.com at http://www.medicinenet.com/hydrochlorothiazide/page2.htm, hydrochlorothiazide is prescribed for the following reasons:

“Hydrochlorothiazide is used to treat excessive fluid accumulation and swelling (edema) of the body caused by heart failure, cirrhosis, chronic kidney failure, corticosteroid medications, and nephrotic syndrome. It also is used alone or in conjunction with other blood pressure lowering medications to treat high blood pressure…. Hydrochlorothiazide can be used to treat calcium-containing kidney stones because it decreases the amount of calcium excreted by the kidneys in the urine and thus decreases the amount of calcium in urine to form stones….”

I didn’t recognize irbesartan specifically, although the sartan part was  familiar. According to the same source, but this time at http://www.medicinenet.com/irbesartan/article.htm, “Irbesartan is used to treat high blood pressure (hypertension) and to help protect the kidneys from damage due to diabetes. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. Irbesartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily.”

Oh, of course! I’m taking losartan for the same reason. I’d had hypertension for over 20 years before I was diagnosed with Chronic Kidney Disease. Even if I hadn’t, once I was diagnosed with CKD, a drug like this would have been prescribed.  As a matter of fact, when I complained to my primary care doctor that I was taking too many pills (mostly supplements), she came up with one that combined hydrochlorothiazide and losartan.

 

 

 

 

But I digress. So, it’s a good thing that this reader no longer needs her hydrochlorothiazide since she has no swelling and that her irbesartan has been reduced since her blood vessels are becoming more relaxed. Wait a minute. Why wouldn’t every CKD patient want these results? Ah, but I’ve left something out of the equation.

She’s gone GF or Gluten Free. Ready? Here is the definition of gluten from the Oxford Dictionary at https://en.oxforddictionaries.com/definition/GLUTEN “A mixture of two proteins present in cereal grains, especially wheat, which is responsible for the elastic texture of dough.” Oh, come on. There must be more to it than that. Let’s try gluten free instead of gluten. Oh, my! NephCure at https://nephcure.org/livingwithkidneydisease/diet-and-nutrition/gluten-free-diet/

has an entire page devoted to going gluten free. But I am getting ahead of myself here.

Let’s go back to gluten, this time sources. The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html  offers these lists:

What Foods Have Gluten?

Gluten is found in wheat, rye, barley and any foods made with these grains. Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients. These include but are not limited to:
White Flour
Whole Wheat Flour
Durum Wheat
Graham Flour
Triticale
Kamut
Semolina
Spelt
Wheat Germ
Wheat Bran

Common foods that are usually made with wheat include:
Pasta
Couscous
Bread
Flour Tortillas
Cookies
Cakes
Muffins
Pastries
Cereal
Crackers
Beer
Oats (see the section on oats below)
Gravy
Dressings
Sauces
This may seem like a long list, but there are still plenty of gluten-free foods out there! Choose from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts and gluten-free grains like quinoa or rice. There are also gluten-free versions of many of the foods above available in most grocery stores. You just have to look for them!

Gluten Surprises
You may not expect it, but the following foods can also contain gluten:
broth in soups and bouillon cubes
breadcrumbs and croutons
some candies
fried foods
imitation fish
some lunch meats and hot dogs
malt
matzo
modified food starch
seasoned chips and other seasoned snack foods
salad dressings
self-basting turkey
soy sauce
seasoned rice and pasta mixes
There are also many additives  and ingredients in packaged foods that may contain gluten. Always check labels and ingredient lists for these. For a more comprehensive list of gluten-containing additives, contact your local celiac support group.

Other Tips to Remember
Don’t forget that ingredients in food products change frequently, so always check the label before buying packaged foods. Remember that “wheat-free” does not automatically mean “gluten-free.” While a product may not contain wheat, it can still contain rye or barley in some form. If you have any question about whether a food contains gluten, contact the manufacturer directly.

The Fuss About Oats
Pure oats are a gluten-free food, but most commercially processed oats have been contaminated during the growing, harvesting or processing stages. In the past, many experts recommended completely avoiding oats  those on a gluten-free diet in addition to wheat, barley, and rye. Now, some oats are grown and processed separately, and can be labeled “gluten-free.”

I see an awful lot of the same foods to avoid on this list as I do on the renal diet. I wonder if that would make it easier to go gluten free if you decide to?

Phosphorous! Aha. We, as CKD patients, need to limit our phosphorous intake. Have you noticed that many of these foods are high phosphorous? Is it possible that the gluten free diet will help us with our renal diets? I’m not suggesting that you go gluten free and I’m not suggesting that you don’t. I am saying the idea is, well, intriguing.

Before I forget: SlowItDownCKD has been chosen as one of Healthline’s top kidney disease blogs for 2017. Second year in a row!!!!! AND I’ve lowered the price of all five of my digital kidney books to $2.99 to spread the awareness of CKD out there more effectively. Oh, yes, you can still get them for free on Kindle Unlimited.

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!

 

 

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!

 

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!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

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!

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

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!

Never Too Old to Learn

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

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

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

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

Abnormal levels of cholesterol, triglyceride or both

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

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

IMG_2982Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

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

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

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.FullSizeRender (3)

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

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

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

cholestero

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

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

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.

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

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

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

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

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

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition.

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

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

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

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

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

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Medical Individuals

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

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

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

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

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

cjasn

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

TED Doesn’t Talk to Me; But YouTube Does

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

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

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

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

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

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

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

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

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

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

FullSizeRender (3)

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

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

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

YouTube is a Google company.”

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

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

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

Threats

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

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

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

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

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

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

Until next week,

Keep living your life!

And I Shall Dance the Night Away

Once upon a time, there was a little girl who loved to dance. Her parents were ballroom dancers: smooth, gliding, and delightful to watch. She ballroomwanted to do that, too, but there were no ballroom lessons for little girls at that time. She took a tap lesson or two, but the dance school was too far away for her to walk or for her driving shy mother to drive.

Then there was nothing until her junior high school offered dance lessons during the physical education period, all kinds of dance: square, cha-cha, rhumba, mambo, salsa, waltz, foxtrot. That’s when she realized her parents were her best dance teachers… and that dancing was in her blood. When she hit college, she went dancing with her buddies every chance she got. At that time, it was clubs.

Eventually she married, had a family, and only danced at weddings. It wasn’t such a happy time for her. But her children grew older and she found she could bring them to swing dances with her. She was happy again. One of these children grew up to initiate and teach blues dance lessons every week.  She was ecstatic.

That group is Sustainable Blues, Phoenix, and that child is Abby Wegerski. The little dancer grown up? It’s me, as if you hadn’t guess by now. And here’s comes the reason for the dancing introduction to this week’s blog.

We have Chronic Kidney Disease; we need to exercise at least half an hour a day for five days a week, daily if possible. This little tidbit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains why:What is it

“I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.”

I went into this just a bit further in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your IMG_2982other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.”

Okay. Got it. Now the biggie: Is dancing the exercise we think it is?  I turned to WebMD at http://www.webmd.com/fitness-exercise/features/dancing-your-way-to-better-health#2 for the following:

(Exercise physiologist Catherine Cram, MS, of Comprehensive Fitness Consulting in Middleton, Wis. is the one being quoted.)

“Once someone gets to the point where they’re getting their heart rate up, they’re actually getting a terrific workout….Dance is a weight-bearing activity, which builds bones. It’s also wonderful for your upper body and strength, says Cram.”

Weight-bearing? I wasn’t so sure I could accept that so I turned to the National Institute of Arthritis and Musculoskeletal and Skin Diseases at http://www.niams.nih.gov/health_info/bone/Bone_Health/Exercise/default.asp for verification.

“The best exercise for your bones is the weight-bearing kind, which forces you to work against gravity. Some examples of weight-bearing exercises include weight training, walking, hiking, jogging, climbing stairs, tennis, and dancing.”

Look at that last word. Finally! My weight is working for me, instead of against me. Of course, I am in no way suggesting you gain weight so you can get more of the weight-bearing benefits of dancing. You know that, don’t you? Don’t you????

But that’s not the only benefit of dancing as a weight-bearing exercise. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, FullSizeRender (3)Part 2 I included part of a Los Angeles Times article about weight-bearing exercise. Potteiger is Jeffrey Potteiger, an exercise physiologist at Grand Valley State University in Grand Rapids, Mich., and a fellow of the American College of Sports Medicine.

“’Another big advantage … is improving glucose metabolism, which can reduce the risk of diabetes. Strength training boosts the number of proteins that take glucose out of the blood and transport it into the skeletal muscle, giving the muscles more energy and lowering overall blood-glucose levels.If you have uncontrolled glucose levels,’ Potteiger said, ‘that can lead to kidney damage, damage to the circulatory system and loss of eyesight.’”

I found the following list on the website of  Australia’s Victoria State Government Better Health Channel at https://www.betterhealth.vic.gov.au/health/healthyliving/dance-health-benefits after a bit of digging and liked how succinctly it demonstrated just how much we benefit ourselves when we dance.

 Health benefits of dancing

Dancing can be a way to stay fit for people of all ages, shapes and sizes. It has a wide range of physical and mental benefits including:

  • improved condition of your heart and lungs
  • increased muscular strength, endurance and motor fitness
  • increased aerobic fitness
  • improved muscle tone and strength
  • weight managementdepression-cause-heart-attack-1
  • stronger bones and reduced risk of osteoporosis
  • better coordination, agility and flexibility
  • improved balance and spatial awareness
  • increased physical confidence
  • improved mental functioning
  • improved general and psychological wellbeing
  • greater self-confidence and self-esteem
  • better social skills.

Wow – just wow. Who knew that the little girl who loved dancing would grow up to be the woman who used what she loved to help keep her Chronic Kidney Disease under control?

After all this good news – actually joyful to me – I unfortunately have to end this week’s blog on a cautionary note. It’s been brought to my IMG_2980attention that students are still being tricked into wasting their money by renting my Chronic Kidney Disease books for more than it would cost to buy them or asking their libraries to order copies to be borrowed for free . So, here’s the same warning I published earlier this year in SlowItDownCKD 2015.

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

College has changed. It’s no longer two or three terms a year. Many college classes have staggered start dates, some weekly, some graduationmonthly. Many of the duped students used their financial aid money to pay these book rental companies. Be careful, students.

Until next week,

Keep living your life!

Then Why Wait?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

Not Your New Age Crystals

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

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

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

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

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

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

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

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

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

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

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

CAD: coronary artery disease

hyperlipidemia: high cholesterol

hypertension: high blood pressure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_2980Until next week,

Keep living your life!

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!

Teachers Teach

Many of you have asked that I post the interview by The American Federation of Teachers. I aim to please, so here it is.

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

Gail Rae-Garwood talks and writes all the time about slowing down — but she’s not referring to her lifestyle speed. She’s talking about putting the brakes on Chronic Kidney Disease.

When this retired high school English teacher and United Federation of Teachers member was diagnosed with CKD in 2008, she was shocked. A new doctor detected unhealthy levels for kidney functioning in routine blood and urine workups. She was sent to a nephrologist. “I didn’t know what it was and what it meant,” she said. “I was terrified and thought I had nowhere to turn.”

She began researching and finding ways to manage this inflammatory disease through a specialized, calibrated diet, exercise, stress reduction and proper sleep. Then she realized she wanted to help others steer toward solutions. Rae-Garwood writes a weekly blog, a daily post and has published four books designed for people with CKD. She answers questions from around the world. She has spoken at coffee shops, Kiwanis Clubs, independent bookstores and senior citizen centers. She’s been a guest blogger for the American Kidney Fund, which promotes prevention activities AKF logoand educational resources, and provides financial assistance for clinical research and for kidney patients who need help with dialysis and transplants.

While she is careful about getting enough sleep and eating right, Rae-Garwood does not let any waking time slip by unnoticed. She has been interviewed on Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Help. She has been interviewed for the Wall Street Journal’s Health Matters and The Center for Science in The Public Interest.

Her action is not all talk. She also puts on the sneakers: In addition to her regular walks for health, she hustled up a team for the National Kidney Foundation of Arizona Kidney Walk.

By now, even her heart is probably kidney shaped.

Rae-Garwood also organized several talks at the Salt River Pima-Maricopa Indian Community, not far from where she lives in Arizona.

Blacks, Hispanics, Native Americans and Asians are more prone to CKD, she said. “I wanted to bring awareness everywhere I could.”NKF-logo_Hori_OB

Education is vital because so many people are unaware they even have the disease. Rae-Garwood is one of many who did not have any symptoms. “Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before (CKD) was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.”

And CKD, left unchecked and untreated, can wreak havoc and death. According to the American Association of Kidney Patients, “The increase of kidney disease is now reaching epidemic proportions. The rates are even higher among racial and ethnic minorities. Chronic kidney disease can progress to end-stage renal disease and the need for dialysis or a kidney transplant.”

Rae-Garwood’s goal is to educate people and help them with their health. “You can slow down the progress of the decline of kidney function,” she said.

And she is the very living proof that people want to see.

kidneys5“I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for nine years and even improved my health. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this,” she said.

After her first book was published, Rae-Garwood received an e-mail from a doctor in India. He said his patients were extremely poor and could not afford the book – yet the information she wrote about was so important to them.

“He asked how I could help. I thought: ‘I could write a blog!’” she said. Her efforts began by putting her book chapters on the blog, piece by piece. The doctor in India printed them and gave them to his patients. Newer blog posts have more up-to-date information, keeping patients informed.

Her informational blog has 106,000 readers from 107 different countries, she said, based on a report from WordPress. On her blog, Rae-Garwood answers questions from readers, lists books about CKD, reports on events, lists support groups, etc. She writes about things that have worked for her, such as using a stationary bike and stretching bands, and walking  — and cautions readers to seek advice from their doctor.

The year-round outdoor climate in Arizona helps Rae-Garwood stay active. While she loved living on Staten Island, she said she owned an old Victorian that she could not afford to fix up in retirement. With an arthritis condition, she also noticed that she was “becoming a bit of a shut-in in the winter.” So she moved to the southwest two months after retiring.

GFRRae-Garwood is not letting any of that sunshine go to waste. Since her 2008 diagnosis. she’s been driving on a steady road to wellness and spreading awareness like a modern day Johnny Appleseed. In her retirement from teaching, she has devoted much time to writing, speaking and teaching about how to thwart the disease. The skills she developed in 32 years as a teacher in Brooklyn, Staten Island, Queens and Manhattan have served her well in this new role as health advocate.

Her own four self-published books are “SlowItDownCKD 2015,” “The Book of Blogs, Moderate Stage Kidney Disease Part 1,” “The Book of Blogs, Moderate Stage Kidney Disease Part2” and “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.” The books are available online at Barnes and Noble and Amazon.

For more information on the disease and this active, 69-year-old retiree, check out https://gailraegarwood.wordpress.com.

I hope that this interview has been both enjoyable and informative. It’s how I live my life…

Until next week,

Keep living YOUR life!

CKD Treatment Interruptus

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

The American Kidney Fund Blog

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

Slowing Down CKD—It Can Be Done

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

No doctor had ever mentioned CKD before.

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

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

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

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

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

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

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

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

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

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

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

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

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

Until next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline. ‘”

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

IMG_1398

 

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

“But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.”

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

Keep living your life!

Deep in the Heart of Texas

Last week I wrote that I’d tell you about our Texas trip this week and that’s just what I’ll do… sort of. We were in San Antonio for the Air Force Basic Training Graduation of a close family friend. I hadn’t wanted to go. The rest of the family was driving 14 hours straight. I thought they were insane.

It turned out I was right about that, but I am glad I went anyway.  The next day, our friend proposed to his girlfriend – who just happened to be our daughter – at The Riverwalk’s Secret Waterfall, Airmen escort and all. THAT was worth the ride. And we got to know his family better, understand them more, and value their company.  As they say in the ad, secret“Priceless.”

There was only one fly in the ointment. While the temperature was manageable for us since we live in Arizona, the humidity was not for the same reason. For my other than U.S. readers (and there are quite a few of them since I have 107,000 readers in 106 countries), Arizona’s usual humidity is low, very low. We do have a three minute rainy season in August (Okay, maybe it’s a teensy bit more than three minutes.) when it rises, but that’s not the norm.

Last week, the humidity in San Antonio, Texas, was between 68% and 72%. Even the air conditioning in the hotel bowed before it.  Our Airman had Air Force logoscheduled the entire weekend for us: The Airman’s run on an open field, late lunch at a restaurant with no available indoor seating, graduation on the parade field, an afternoon on The Riverwalk. There’s more, but you get the idea.  All of it outdoors, all of it in 68% to 72% humidity, all of it uncomfortable as can be.

And, it turns out, all of it not great for a Chronic Kidney Disease patient. Why? Well, that’s the topic of today’s blog. ResearchGate at https://www.researchgate.net/publication/263084331_Climate_change_and_Chronic_Kidney_Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over two years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”DIGITAL_BOOK_THUMBNAIL

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…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.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) NKF-logo_Hori_OBspokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes Digital Cover Part 2 redone - Copyless effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

Oh, so humidity affects sweating and body heat rises.  Humidity greater than 70%. That covers almost the entire time we were in Texas. Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning.html).”

bottled waterUh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

  1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
  2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know.  Stay in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather. Wearing a hat and cool clothes will also help. I certainly learned the value of wearing cotton this past week. It’s a fabric that breathes.

What is itUntil next week,SlowItDownCKD 2015 Book Cover (76x113)

Keep living your life!

Maybe This One?

Hi y’all! I’m still deep in the heart of Texas and will tell you about it next week . My friend Beth, a fellow Landmark graduate and the originator Texasof the Facebook page Morning Gratitude, offers a product  I am eager to explore this week. She is excited about its health and weight loss benefits. This seems to be the national pastime these days, but I must say each person I’ve spoken with is delighted with the results of their products… but they don’t have Chronic Kidney Disease.

You might remember that last November I spent the month writing about different products. They sounded good, healthy, and I wondered if I could use them. The answer? No, no, no, and no. They were either way out of the guidelines for phosphorous, protein, potassium, and/or sodium on my renal diet or they were out of guidelines for the pre-diabetic diet I’ve incorporated with my renal diet.  That incorporation took me over a year to figure out so there was no way I was going to violate it. I have been having some success slowly losing weight and bringing my blood sugar in line by cutting out sugar and most complex starches, as well as continuing to exercise. (Yes, that’s a not at all veiled hint.)

Beth, a friend for three years is so happy with her brand – Plexus Worldwide – that she’s become a distributor. Similar to some of the other brands I explored for CKD patients in SlowItDownCKD 2015, Plexus Worldwide offers many different products. I took an in-depth look at the one that seemed to be the basic product: Plexus 96.

According to Beth’s Plexus website at http://shopmyplexus.com/bethbetcher/products/block.html, this particular product contains alpha lipoic acid, chlorogenic acid, garcina cambogia, whey protein, green lipped mussel, aloe vera, and grape seed extract. Stop. What is chlorogenic acid? Anyone? No one knows? Let’s find out together then.

Plexus96 VanillaThis ingredient is a miracle according to the internet. It supposedly helps you lose weight, is an antioxidant, cleanses the liver… shall I go on? I liked almost everything I read about it except that it is not yet approved by the Food and Drug Administration. I never used to care about that. Now I have CKD, so I do.  Why? If a supplement is not approved, there’s no way to know how to adjust the dosage for your (and my) poorly performing kidneys.

In addition, the UK Medicines Information (UKMi) pharmacists for NHS healthcare professionals published the following finding on April 8, 2013:

“Limited laboratory studies appear to suggest that chlorogenic acid can cause liver or kidney changes. Until more is known, it would be prudent to avoid GCE in patients with pre-existing liver or kidney disease.” *GCE is Green Coffee Extract, the source of chlorogenic acid.

Right out of the gate, this is not a product for people with CKD. I would go on, but I think it might be better to explore another of Plexus’s products. You know what they say, ‘One bad apple doesn’t spoil the bunch.’

I liked the sound of the Plexus Slim. When I looked at the ingredient list, the first thing I saw was chlorogenic acid. We know we can’t have this, but plexus slimlet’s look at one more ingredient just for the heck of it. Here’s one I often hear about: garcinia cambogia. I went directly to their website at http://garciniacambogia.org/garcinia-cambogia-side-effects/ to look for possible side effects. Uh-oh:

“Increases risk for rhabdomyolysis, a skeletal muscle disease that causes the muscles to release proteins into the bloodstream leading to kidney malfunction.”

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? What is itHere’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.”

Beth did tell me she didn’t know if Plexus would be good for Chronic Kidney Disease patients. Okay, we’ll look at just one more product before we call it a day. The name drew me to the product and the ingredient silica turned me away again. I’m referring to Plexus X Factor which is described on the website in the following manner.

“Plexus X Factor is a turbocharged multivitamin and antioxidant supplement with a never-before-seen formulation of a patented aloe blend and New Zealand Blackcurrant of which results in vastly improved absorption and assimilation for optimal nutrition and wellness protection.”

Wait a minute. I remember having read something about silica. It wasn’t complimentary. Found it! It was listed under Side Effects and Precautions Label-XFactorof Silica Supplements along with a warning that this is not FDA approved. The address for the article is http://www.newhealthguide.org/Silica-Supplements.html.

“Kidney Function. Some medical teams have also expressed concerns that using silica supplements for a prolonged period of time may cause severe kidney trouble. People who take these supplements have reported kidney stones and medical professionals believe it may be because of a buildup of extra silica within the body as only small quantities are required for proper bodily functions. General kidney deterioration can also occur over time if there is excess silica in the body and this condition is irreversible.”

Are you getting the feeling that none of these new products for health improvement and/or weight are acceptable for CKD patients? I am and it has to do with the unregulated herbs that may cause or worsen kidney damage. What do you say we quit while we’re ahead? Of course, those without CKD need to decide for themselves if this is something they’d like to try.IMG_1398

Until next week,

Keep living your life!

Rain, Rain, Go Away…

We had a day of rain.  I know that’s not a terribly unusual statement, but this is Arizona. July and August are our rainy months; it’s only April. rainWell, we do know the climate is changing. .. and we do know it’s affecting our health. That includes the rain. How? Most often – aside from sun showers – if it’s raining, the sun isn’t shining.

So? What’s the big deal, I can almost hear you ask. You’re not out there getting your 10 to 15 sunscreenless-before-the-day-heats-up minutes of the best source of vitamin D if it’s raining, my friends. Of course, there are supplements and loads of us, like me, take them. But the gold standard? Natural sunlight.

hammock chairBear even got me a hammock chair so I could sit in the sun really, really comfortably for my 10 to 15 minutes. So comfortably, that I found him in my chair once too often when I wanted to be in it and bought him one of his own. Now we can get at least 10 to 15 minutes together each day.

According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/nr/Low-Vitamin-D-Levels-Linked-to-Early-Signs-of-KD:

“Researchers found that those who were deficient in vitamin D were more than twice as likely to develop albuminuria (a type of protein in the urine) over a period of five years. Albuminuria is an early indication of kidney damage as healthy kidneys capture protein for use in the body.

‘There have been a number of studies establishing a relationship between vitamin D levels and kidney disease,’ said Thomas Manley, Director of Scientific Activities for the National Kidney Foundation. ‘This study supports that relationship and shows that a low vitamin D level increases the likelihood of developing protein in the urine, even among a general population.’”

That’s not all, folks.  I jumped back to my very first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for more information about vitamin D and our kidneys:What is it

“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.”sun-graphic1

All for the lack of a little sunshine! Yes, I am being dramatic and, yes, you can take supplements, but that’s like drinking juice instead of eating the whole fruit and expecting the same benefits.

IMG_1398In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I wrote the following:

“I have many more articles in front of me, so I’m going to simply list the areas in which low vitamin D is involved.

  • cardiovascular
  • Chronic Kidney Disease {The purpose of this blog, lest we forget}
  • health hip fracture risk
  • hepatitis B {Have you decided to take the inoculation against this?}
  • hypertension
  • stroke

Got how dangerous low levels of vitamin D can be?  Good.”

Uh-huh, vitamin D is a big deal… especially for us since we have CKD.  According to The National Institutes of Health at https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/,vitamin d pills

“A growing body of research suggests that vitamin D might play some role in the prevention and treatment of type 1 … and type 2 diabetes …, hypertension …, glucose intolerance…, multiple sclerosis …, and other medical conditions….”

Oh, there’s also a good possibility that vitamin D deficiency is a factor in obesity. As one who is constantly attempting to lose weight, I have one thing to say about that, “Go.sit.in.the.sun.”

I’ve been getting questions about transplantation, as in how to, what it entails, and who to contact. I don’t have the answers, but the Erma Bombeck Project does. This is from an email I received from The National Kidney Foundation of Arizona:

ErmaToday, over 100,000 Americans are waiting for a life-saving kidney transplant. The Erma Bombeck Project provides facts and reliable resources to help individuals save a life – whether by registering to be a non-living organ donor, or considering the gift of life through living donation. The project aims to narrow the gap between the number of individuals desperately waiting for a kidney and the number of kidneys available.

We invite you to visit the new, improved site www.ErmaBombeckProject.orgwhere you can find features like:

Facts on kidney donation
A free, downloadable Living Donor Guide
Living Donor Educational Videos
Links to additional resources

I urge you to take a look at the site should this interest you … and I really hope it interests you.

I finally got my print copy of SlowItDownCKD 2015 and am so pleased with the way it turned out that I am seriously considering redoing the SlowItDownCKD 2015 Book Cover (76x113)formats for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2.  Those orphan (standing all alone) blog titles at the bottom of the page always bothered me. Of course, there won’t be any difference if you purchased the digital copy of the books.

In a few days, I’ll be on my way to San Antonio – specifically Lackland Air Force Base – where my step daughter’s sweetheart will graduate from basic training. I’m eager to try out my on-the-road exercise and food ideas during the 14 plus hour drive. Bear is going too, of course, so I’ll have my staunchest supporter with me. And Lara is very respectful of my needs and has even offered to water walk with me since the hotel has a pool. This should be fun! Anyone have any sightseeing recommendations?

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!

All Is Not Lost

Last week, I told you the good news about SlowItDownCKD 2015 being available in print and digital on Amazon.com. And last week, I told the bad news about yet another member of my family being stricken with Parkinson’s disease.SlowItDownCKD 2015 Book Cover (76x113)

I didn’t know much about the medication to ameliorate the symptoms of the disease, so that’s what I’m exploring this week. But… we need to go back a little bit to see what this myriad of symptoms consists of. Let’s start with a simple definition of Parkinson’s disease. We’ll call it PD, but remember that doesn’t mean peritoneal dialysis in this particular blog.

According to Consumer Health Digest at https://www.consumerhealthdigest.com/health-conditions/parkinsons-disease.html,

“Parkinson’s disease is a disorder of the nervous system that progresses with time. It primarily affects the movement of a person. It develops steadily typically beginning with a slight tremor in one hand. Aside from causing tremor that is the most well-known sign of the disease, it also usually causes stiffness or the slowing of movement. During the early stages, the face may show very little, or no expression at all and the arms may not swing when the affected individual walks. Speech can also become softer or slurred.”no expression

I do see most of these symptoms in the newly diagnosed member of my family.  (Anecdote to lighten this heavy blog: one of my brothers has the ‘no expression’ symptom. A young fellow snidely called him stone face. I quietly told him my brother has Parkinson’s and can’t smile. My brother laughed. I laughed. Finally, the young fellow laughed, too.) What else?

The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/symptoms/CON-20028488 answered my question:

“Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson’s disease is a tremor of your hand when it is relaxed (at rest).

Slowed movement (bradykinesia). Over time, Parkinson’s disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.

Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.

Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.

Loss of automatic movements. In Parkinson’s disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.

Speech changes. You may have speech problems as a result of Parkinson’s disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.

micrographiaWriting changes. It may become hard to write, and your writing may appear small.”

Oh, I’d seen all of these in him. Maybe he should have taken his neurologist’s suggestion that he begin medication, but it hadn’t been explained very well. Actually, it hadn’t been explained at all. So what was it?

Oh, my, there are so many different medications listed depending upon your unique set of symptoms. The most common is a combination of L-dopa and carbidopa according to WebMD at http://www.webmd.com/parkinsons-disease/guide/drug-treatments.

“Levodopa (also called L-dopa) is the most commonly prescribed and most effective drug for controlling the symptoms of Parkinson’s disease, particularly bradykinesia  and rigidity.

Levodopa is transported to the nerve cells in the brain that produce dopamine. It is then converted into dopamine for the nerve cells to use as a neurotransmitter.

…carbidopa increases its effectiveness and prevents or lessens many of the side effects of levodopa, such as nauseavomiting, and occasional heart rhythm disturbances.”

Hey, wait a minute! Drugs.com at http://www.drugs.com/cdi/carbidopa-and-levodopa-suspension.html is emphatic that you tell your doctor if you have diabetes or kidney disease BEFORE this is prescribed for you. Ummmmm, we have CKD; that’s kidney disease… and many of us have diabetes which caused the CKD. There’s the same warning about kidney disease on the same site for carbidopa.

Last week, I discovered that if you have ESRD, you’ll more likely to develop Parkinson’s. This brings up more and more questions for me. My newly diagnosed with Parkinson’s family member doesn’t have CKD, but I do… and you do. What if we reach end stage? What if we develop Parkinson’s? You know what? That’s what the specialists are for.parkinsons-disease-info

Thank you to MichaelJFox.org for sharing the infogram above.

Looking at the medical treatments of a disease that’s fairly new to me, what I’ve realized is that your drug treatment has to be specifically tailored for you. You may have symptoms my loved one doesn’t; he may have symptoms you don’t. You may well tolerate a drug; he may need secondary drugs to counteract the side effects of the same drug. He may well tolerate a drug you just can’t without several secondary drugs to counteract the side effects.

When one of my brothers told me this is a complicated disease, I don’t think I realized just how complicated. I’m not a doctor as I keep repeating. I know when we need one, a specialist at that, and now is the time.

Does that mean lose hope? Of course not, drugs are only one type of treatment for Parkinson’s. There’s a whole new field of physical therapy especially for movement disorders. Most of these will cover:

Strengtheningpd ex

Flexibility

Balance

Gait Training

Transfer Training

I’ve been watching my loved one struggle to lift himself off the couch, navigate turns while walking, and keep his balance. It could be heart breaking if we didn’t know help is available. The program he’ll be attending is intensive, four weeks of four days a week. The retired teacher over here told him to think of it as school. Honestly, I don’t care how he thinks of it as long as he does it.

What is it

Well, it’s time to try out some of his until therapy starts exercises with him.IMG_1398

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

I thought it was a mean April Fool’s joke, but it wasn’t. I thought I’d heard wrong, but I hadn’t. I thought this was a mistake, but it wasn’t. Both of my brothers have Parkinson’s Disease. Now another non-blood family member had just been diagnosed with the same disease… out of the blue, unexpectedly, seemingly impossibly.

PD – Parkinson’s Disease in this case, not to be confused with Peritoneal Dialysis – is not only a genetic driven disease, but sometimes an environmentally driven one. This relative had been in Viet Nam. This relative had had the job of patrolling the areas of the jungle that had been saturated with Agent Orange to defoliate for better visibility. He’d done that every 15 days for over a year. 45 years later, he’s been diagnosed with PD. A coincidence? Not according to his neurologist who immediately told him to file disability papers with the Veterans’ Administration based on this information.

agent orangeMy mind was tripping over itself trying to explain this all to you – and to me. I needed to know just what this Agent Orange was. Dictionary.com at http://www.dictionary.com/browse/agent-orange?s=t explained:

“a powerful herbicide and defoliant containing trace amounts of dioxin, a toxic impurity suspected of causing serious health problems, including cancer and genetic damage, in some persons exposed to it and birth defects in their offspring: used by U.S. armed forces during the Vietnam War to defoliate jungles.”

Dioxin? What’s that? It sounded familiar, but I couldn’t quite remember. I wanted a definition I could understand so I jumped right over to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=15798.

“One of a number of poisonous petroleum-derived chemicals which are produced when herbicides (substances used for killing plants) are made or when plastics are burned. Dioxins are chemically dibenzo-p-dioxins….”

Poisonous. That made me wonder what this poison could do to a human body. This is the list of those possibilities I found on the Veterans’ Administration’s Agent Orange website at http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp

AL Amyloidosis, A rare disease caused when an abnormal protein, amyloid, enters tissues or organs

Chronic B-cell Leukemias, A type of cancer which affects white blood cellsdioxin

Chloracne (or similar acneform disease), A skin condition that occurs soon after exposure to chemicals and looks like common forms of   acne seen in teenagers.

Diabetes Mellitus Type 2 (Me here: Diabetes is the number one cause of CKD.), A disease characterized by high blood sugar levels resulting from the body’s inability to respond properly to the hormone insulin

Hodgkin’s Disease, A malignant lymphoma (cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia

Ischemic Heart Disease, A disease characterized by a reduced supply of blood to the heart,  that leads to chest pain

Multiple Myeloma, A cancer of plasma cells, a type of white blood cell in bone marrow

Non-Hodgkin’s Lymphoma, A group of cancers that affect the lymph glands and other lymphatic tissue

tremorParkinson’s Disease (My bolding), A progressive disorder of the nervous system that affects muscle movement

Peripheral Neuropathy, Early-Onset, A nervous system condition that causes numbness, tingling, and motor weakness.

Porphyria Cutanea Tarda, A disorder characterized by liver dysfunction and by thinning and blistering of the skin in sun-exposed areas.

Prostate Cancer, Cancer of the prostate; one of the most common cancers among men

Respiratory Cancers (includes lung cancer), Cancers of the lung, larynx, trachea, and bronchus

Soft Tissue Sarcomas (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma, or mesothelioma), A group of different types of cancers in body tissues such as muscle, fat, blood and lymph vessels, and connective tissuespd

My heart sank. But what of the Parkinson’s patient who also has Chronic Kidney Disease. How will the CKD be affected by the PD? We already know we, as CKD patients, can develop muscle weakness and tiredness due to our poorly filtered blood (We know you’re trying, damaged kidneys.). Parkinson’s does the same. I couldn’t even image being the victim of doubly weak muscles.

I found a number of scholarly studies on the effects of PD on those with CKD, but each site was of the purchase-the-study-if-you-want-to-read-it type. That was a bit too costly for me. I still needed more information though.

I discovered that renal disease does contribute to “excessive daytime sleepiness in PD patients” (http://www.ncbi.nlm.nih.gov/pubmed/21435111), although I was actually looking for PD effects on CKD. We’re already tired. Does this mean we’ll be even more tired should we develop PD?

banner-nihlogoReady to be shocked? Here we go: “ESRD is significantly associated with an increased risk of Parkinson’s disease. Close surveillance for Parkinson’s disease should be considered for patients with ESRD.” Oh great. As if we didn’t have enough to worry about. By the way, ESRD is end stage renal disease. Once again, the National Institutes of Health gave us this information. Take a look at the study’s abstract at http://www.ncbi.nlm.nih.gov/pubmed/24751820.

While not exactly on topic, I found this disturbing similarity between the two diseases:

“Frustratingly, for kidney failure patients, the routine laboratory tests are almost never abnormal, and only hint abnormality when the failure process has already begun.  In Parkinson’s disease, as in kidney failure, a ‘threshold’ of cells must be lost before one manifests symptoms.”

There’s more, much more, from The Center for Movement Disorder and Neurorestoration at http://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/parkinsons-disease-information/

Now I’m beginning to wonder if the drugs for Parkinson’s exit the body through the kidneys, but I think that’s a topic for another blog. I also realize that having CKD may affect PD more than PD may affect CKD. Sometimes, I surprise myself with what I learn.SlowItDownCKD 2015 Book Cover (76x113)

On the other hand, I have some good news. Yay! SlowItDownCKD 2015 is now available in print form and the digital form has been updated somewhat. Click on the title to go right to Amazon. One of my readers tells me I get more editing done when I’m sick (Yep, I have the flu.) than at any other time. I believe she has a point there.What is it

Part 2

DIGITAL_BOOK_THUMBNAIL

 

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!

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!

Now What? Oh, the Pressure.

I had fully expected to be publishing a guest blog by a personal chef today.  All she needed was a copy of the renal diet I followed.  Well, that was Thanksgivingwhat we had talked about. But, as happens sometimes, that was simply not meant to be. Hmmmm, could this be the universe offering me another indication that I was correct in thinking I needed to stay away from writing about recipes on the blog?

So there I was casting around for a topic that I wanted to know more about and you’d enjoy reading about. Of course, I’d already completed my daily perusal Twitter for any articles about anything related to Chronic Kidney Disease.

Bingo!  This is what I found on Twitter about something I’d never really understood:  ‘Blood Pressure, the Top and Bottom Numbers ‘(and I’ll add here:  the risk of disease). The URL for this is http://well.blogs.nytimes.com/2015/12/09/ask-well-blood-pressure-the-top-and-bottom-numbers/?partner=rss&emc=rss&smid=tw-nythealth&smtyp=cur

“Both elevated systolic blood pressure (the top number) and diastolic (the bottom number), together or alone, increase the risk for cardiovascular disease. The systolic reading indicates the pressure in the arteries produced when the heart beats; the diastolic is the arterial pressure between beats, when the heart is at rest. Readings below 120/80 are considered healthy.

Though high systolic and diastolic readings are both associated with increased risk, they may present different risks for different diseases. In 2014, researchers published a study of more than 1.25 million people 30 and older who were initially free of cardiovascular disease. They recorded their blood pressures, and followed them for an average of 5.2 years, during which 83,098 developed cardiovascular disease.

blood pressure 300dpi jpgOver all, those with a reading above 140/90 had a higher risk for cardiovascular disease than those with lower blood pressure — an unsurprising finding.

But the researchers also found that the risk of some diseases could be predicted by a high systolic reading, and others by a high diastolic reading. For example, the risk for heart attack is more strongly associated with an elevated systolic pressure. But the risk for abdominal aortic aneurysm, a swelling or rupture in the large artery that goes from the heart to the chest and abdomen, is higher when the diastolic pressure is elevated.

‘It’s reasonable to say that the systolic effect over all is slightly stronger than the diastolic,’ said the senior author of the study, Dr. Harry Hemingway, a professor of clinical epidemiology at University College London and director of the Farr Institute.

‘But if you have isolated diastolic hypertension,’ he added, ‘you still have hypertension, and you should take measures to lower it.’”

This makes sense, but it certainly got me to wondering. I wanted to know which of these numbers was more important to your health. Here’s what The American Heart Association at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Low-Blood-Pressure_UCM_301785_Article.jsp had to say about that.

“Typically more attention is given to the top number (the systolic blood pressure) as a major risk factor for cardiovascular disease for people over bp cuff50 years old. In most people, systolic blood pressure rises steadily with age due to increasing stiffness of large arteries, long-term build-up of plaque, and increased incidence of cardiac and vascular disease.”

Wait a minute. Is this contradictory? I get it that you need to pay extra attention to the systolic number if you’re over 50, but this statement seems to be saying that your blood pressure is going to rise anyway because you’re over 50.

I found this age appropriate blood pressure reading chart at Disabled World (http://www.disabled-world.com/artman/publish/bloodpressurechart.shtml)

Age

Systolic BP Diastolic BP
3-6 116 76
7-10 122 78
11-13 126 82
14-16 136 86
17-19 120 85
20-24 120 79
25-29 121 80
30-34 122 81
35-39 123 82
40-44 125 83
45-49 127 84
50-54 129 85
55-59 131 86
60+ 134 87

Ah, so your numbers will rise as you age, but not to any danger level.  Hmmmm, I’m usually in the 60+ range and hadn’t realized that was normal. Good thing I hadn’t spent any time worrying about those readings.

Well, what about the new(ish) guidelines for a healthy blood pressure?  How does that fit in here?

“Adults aged 60 or older should only take blood pressure medication if their blood pressure exceeds 150/90, which sets a higher bar for treatment than the current guideline of 140/90, according to the report, published online Dec. 18 (2013) in the Journal of the American Medical Association.

stages of CKDThe expert panel that crafted the guidelines also recommends that diabetes and kidney patients younger than 60 be treated at the same point as everyone else that age, when their blood pressure exceeds 140/90. Until now, people with those chronic conditions have been prescribed medication when their blood pressure reading topped 130/80.”

The above is from WebMD at http://www.webmd.com/hypertension-high-blood-pressure/news/20131218/new-blood-pressure-guidelines-raise-the-bar-for-taking-medications.

One note of warning here: I tested at the usual levels for someone my age when I was in my 50s, so I stopped the Hbp medication.  Yes, there was a six month honeymoon period of in sync readings. But then, they went up and up.  It was the medication that was keeping me in the normal range.

I was delighted to give you and me the Chanukah present of an index for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. This new edition is now on sale at Amazon.com and should be on B&N.com in between five to seven weeks.  If you’ve already bought a copy of the book and would like an index, email me at SlowItDownCKD@gmail.com and I’ll be glad to send it to you.

IMG_1398

Now for an early Christmas/Kwanzaa present for all of us… The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now indexed and the new edition should be on sale at Amazon by the end of next week. B&N.com will take an additional six to eight weeks.  The offer to email you an index if you have an older edition of the book stands for Part 2 also.

It feels like What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is being left out so look for a contest for that book around New Year’s.What is it

Until next week,

Keep living your life!

Last One

Between my indexing work on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  and that of Amy Hall at AmethystHarbor.com (indexer par excellence) on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, you can email me at slowitdownckd@gmail.com for an index for the copies of the books you already bought.  I’ll need your email address and which index you need: Part 1 or Part 2 or both. This is my Chanukah gift to you.

IMG_1398

And let’s not forget What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the twins’ big sister.

What is it

Ready for the blog? This is the last piece in a series on what I call wellness supplement plans. My good buddy, Mary Dale at (480) 415 – 7748 or Mary.Dale@rocketmail.com (love that email address) tried this one and liked it so much that’s she’s recently become a distributor. Note: Mary – thankfully – is not a Chronic Kidney Disease patient. Her information above is not for the purpose of promoting the product to CKD patients, but something to pass on to non-CKD friends should they become interested.it works

The plan Mary uses is called It Works!  You can find information that I may not be including in today’s blog at ItWorks.com. The home page allows you to choose your country and language, but offers no ingredient labels. Rather, the ingredients are listed without percentages or specifics. It struck me as more of a selling and keeping up with new products page. I couldn’t use the information for the blog.

I did find this interesting. (Mark Pentecost is the founder of the company.)

“The more I got into the education of a vitamin, I started learning more about what’s all natural versus synthetic,” says Mark. “A lot of times you’d find that a product might have 100-200 ingredients, but there wasn’t enough of each ingredient for the product to actually do what the clinicals showed they could do. You want something foundational that you know has the key ingredients to help keep us healthy and be the best we can be.”

Okay, all natural is good.  But how much of what was in each product?

Ugh. What was I going to do now? I could change the topic… but wait. Mary’s buddy, Allie Helm, called me with directions as to how to get into the site to a spot where I could see just what I needed. Great timing, ladies.

409px-Glass-of-waterI thought I’d start with Allie’s favorite, which is Greens On The Go {Orange} Alkalizing Drink Powder. The directions say to mix the powder with 8 ounces of water or fruit juice. I started looking at the ingredients when ‘silica’ at the bottom of the page caught my eye. I knew about occupational silica, but what about this in a supplement?

Livestrong.com at http://www.livestrong.com/article/288425-side-effects-of-silica-supplements/#sthash.9dJB8q7k.dpuf tells us,

“The University of Maryland Medical Center says that prolonged use of silica supplements in any form is not recommended. Severe kidney trouble may occur after prolonged use. Kidney stones have been reported in people taking silica supplements, which may be due to a buildup of silica in the body since only a small amount is needed for the body to function properly. Also, general kidney deterioration, which is irreversible, will eventually occur with excess silica in your system.”

Well, that’s out for Chronic Kidney Disease patients. Let’s take a look at Mary’s favorite product. She likes the Advanced Formula Fat Fighter with Carb Inhibitors. The directions read, “Adults take 2 tablets during or up to 60 minutes after each large meal. Drink at least 8 glasses of water daily.” Hmmm. Above the directions, there’s a caution: “Consult your physician if you… have a medical condition.”

We do. We have Chronic Kidney Disease.

I never even got to the ingredient label with this one.  My eye was snagged by the Other Ingredients, one of which was also silica. Another is dicalcium phosphate, better known as phosphate salts. Awwww. As CKD patients, we need to watch both the phosphorous and sodium in our diets without adding any in supplements. Nuts, I really liked the idea of something thatbelly fat

‘…will absorb the fat and carbohydrates from your food so that your body doesn’t.”

Not only that, but here I am doing my best to avoid Type 1 Diabetes and this product also claims that it “Helps balance blood glucose level…”

Dirty words.  I knew it was too good to be true – at least for a Chronic Kidney Disease patient.

I guess we’ve learned our lesson this month, ladies and gentlemen.  While each of the products may or may not be just the ticket for those without CKD, we do have CKD… which means they are not all for us. I am disappointed, but as I always say, “My kidney function comes first.”

Talking about that:

WHAT: Free Community Health ScreeningNKF-logo_Hori_OB
WHEN: Saturday, December 5, 2015 from 8:00am-1:30am (appointments highly encouraged)
WHERE:  First Institutional Baptist Church | 1411 E. Jefferson Street, Phoenix, AZ 85034
WHO: Participants must be 18 years of age or older AND
a) have a family member (father, mother, brother, sister) with diabetes, heart disease or kidney disease
OR b) participant must have a personal history of diabetes or high blood pressure.

TO MAKE AN APPOINTMENT: Please call (602) 840-1644 English / (602) 845-7905 Spanish

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

They provide free blood and urine testing, which is evaluated on site 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.

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!

Clogged Up?

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

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

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

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

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

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

Abnormal levels of cholesterol, triglyceride or both

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

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

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

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

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

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

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

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

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

cholestero

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

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

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

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

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

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

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

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

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

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

4wedding

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

Until next week,

Enjoy your life!

Aha! It is Possible.

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

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

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

Scan0003

(Seems I see things off kilter. Scan0002

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_1398

Until next week,

Keep living your life!

 

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!

They’re Not Two Separate Things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!labor day

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!

Sexy!

IMG_2867Sometimes as you age, you find that sex is not that important… or, at least, the hanging from the chandeliers kind isn’t. *sigh* Add to the age factor that you and/or your partner may have physical limitations or be taking medication that impedes indulging as often and as fervently as you used to. *sigh*sigh* Now add your Chronic Kidney Disease to this equation. *sigh*sigh*sigh*

Does this mean you’re doomed to a life of fervent hugging and kissing and no more? Not at all, my friends, not at all.

Let’s take a look at what I had to say (oh, all right, write) about the glorious, yet somehow still taboo, topic of sex for CKD patients. Those of you Book Coverwith a print copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will find this begins on page 100. If you have the digital version, do a word search for ‘sex.’ It’ll be the third finding on the search.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate.  Usually, these problems start with an inability to keep an erection as long as usual.  The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body.  Or maybe it’s leaky blood vessels.  Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones. Possibly, you’re tired from CKD induced anemia.  I’ve just mentioned a few possibilities. The silver lining is that there are almost as many treatments as there are causes.

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety.  But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes.

blood pressure 300dpi jpgThe usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. There are other treatments not mentioned here….

Sometimes, the treatment is as simple as counseling and the cessation of smoking and alcohol.  Hmmmm, as CKD patients, we’ve already been advised to stop smoking and drinking.  This is another reason for male CKD patients to do so.

Women with CKD may also suffer from sexual problems, but the causes can be complicated.  As with men, renal disease, diabetes and hypertension may contribute to the problem.  But so can poor body image, low self-esteem, depression, stress and sexual abuse [It’s become clear since the book was published in 2011 that men also may suffer from these conditions]. Any chronic disease can make a man or a woman feel less sexual.

Some remedies for women are the same as those for men.  I discovered through my research that vaginal lubricants and technique, routine, and environment changes when making love, warm baths, massage, and vibrators can help. Again, there are other, more medical treatments.

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed.  I was obsessed with my [e.g. premature and unnecessary] revulsion of dialysis and needed to hear over and over again that it was a couple of decades too early to worry about this.  I was also tired and didn’t know why, just worried that I would always need an afternoon rest period.… Then I discovered that vaginal strep B can occur in women over 60 with CKD.  Luckily for me, if you catch it and treat it early on, it’s just an infection that you take antibiotics to kill.  If you don’t treat it early, you just may be looking at some serious consequences.

Since we’re in the early stages of CKD, chances are the sexual problem is not physical other than being tired.  I never talked to my nephrologist about sex because I felt there was no reason to, and I had a partner who was willing to work around my rest periods until I had the energy.  But, I sleepam convinced, that if I ever do feel I have reason, I would talk to him. I’m older and prefer women doctors for the most part especially when it comes to private matters but this man is the specialist who knows far more than I do about this disease I am struggling to prevent from progressing.  There is a point when you realize your life is more important than not being embarrassed.

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.  And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful.  You’ve got to keep in mind that some CKD patients never have sexual problems, no change in frequency and depth of desire and no impairment in the act itself.  This is not the time to make yourself the textbook case of the CKD patient who suffers sexually because of her disease. The best advice I received in this area was make love even if you don’t want to.  Magic.

I wrote that five years ago and very little has changed. You’ll see that I added an update in brackets and omitted outdated information.  Otherwise, my advice is the same.  But keep in mind that I am not a doctor and have never claimed to be one. Speak to your nephrologist if you feel your sex life is being hampered by your CKD.

Check The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 to see if they have more information about sex and our disease.IMG_1398

Wow!  I keep the blog to about 1,000 words and I’m already over.  It’s just as well, we’re off to find some delicious candles and add some sexy music to the iPod… just in case we’re in the mood sometime soon, you understand.

Until next week,

Keep living your life!

Do I or Don’t I?

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

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

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

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

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

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

organ meats which are high in phosphorouscpy broccoli.2

spinach which is one of the highest potassium foods

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

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

Me and My Llama, Going to the Dentist Today

No, I’m not crazy and I’m not talking about one of the llamas living only a few miles from my home. Nor am I ignoring the rules of structure.

Today’s title is from the lyrics of a song sung on the children’s television show Sesame Street just about the time my first born (the ever interesting Ms. Nima Beckie)llama had her first dental appointment.  Believe me, it helped reduce her anxiety – and mine – about that appointment.

You guessed it.  I’ve been getting questions about Chronic Kidney Disease and dental health. I know some readers are saying, “Huh?” I did, too, until I did some research. (Maybe my brand should be, “I research so you don’t have to,” instead of “SlowItDownCKD”?)

By the way, in fulfilling an assignment for Landmark Worldwide’s Wisdom Unlimited course I discovered I first started researching in fifth grade.  My topic? Ladies in Waiting. My research results? Dismal.  I sure am glad those days of encyclopedias and library books only for research are over. Oh wait, I was writing about dental health.

You’ve already read my previous blogs about the safety of nitrous oxide (laughing gas) and Novocain, so today’s blog is going to be about the laughingconnection between CKD and dental problems.  If you remember that diabetes is the leading cause of CKD, you’ve already figured out that the diabetes itself could be causing the dental problems with people suffering from both CKD and diabetes.

But what about those of us who don’t have diabetes.  Why could we be prone to dental problems? I started my research with DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/dental-health-for-people-with-kidney-disease/e/4731

A study in the Journal of Clinical Periodontology reported that people with kidney disease and those on dialysis are more likely to have periodontal disease and other oral health problems than the general population. Buildup of bacteria in the mouth can cause infection. Because people with kidney disease have weakened immune systems, they are more susceptible to infections.

Journal of CLinical Perioldontolgy coverBone loss in the jaw can occur in those with kidney disease. Calcium imbalance contributes to loss of calcium from the bones resulting in weak bones. Weak bones can cause teeth to become loose and potentially fall out. The best way to help prevent bone loss is to make sure calcium and phosphorus levels stay within the goal range.

Oh, there is so much to go with there! I immediately started digging into What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for whatever it was that was tickling my memory and found it in the glossary on page 136.

What is itVitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.

We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read my blogs about vitamin D?  Good!  The rest of you, it might be a good idea to use the topic search to find and read them. You know, “I research so you don’t have to,” etc.

I’ve read again and again in the online support groups that there are major questions about controlling your phosphorous intake, specifically keeping it low. Keep that in mind when you think of CKD and dental health.

plaqueThe biggest part CKD plays in dental health and periodontic issues is that of lowering your immune system. Remember my writing about proteinuria, something you can develop with CKD? Quick reminder: this is just what it sounds like; protein leaks into the urine. 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.

How do you get an infection in your mouth in the first place, you ask. Think about plaque. This is what the National Center for Biotechnology Information, part of the National Institutes of Health, offered at http://www.ncbi.nlm.nih.gov/books/NBK8259/

Dental decay is due to the irreversible solubilization of tooth mineral by acid produced by certain bacteria that adhere to the tooth surface in bacterial communities known as dental plaque.interior of tooth

In other words, you eat and the acid in your food combines with bacteria to form plaque which then starts to demineralize your tooth enamel.  Usually, you have the antibodies in your immune system to prevent cavities… although we probably all know someone without CKD who doesn’t.  You, as a CKD sufferer, do not have the necessary antibodies.  The CKD has already compromised your immune system.

This is what the University of Maryland Medical Center at http://umm.edu/health/medical/reports/articles/periodontal-disease has to say about gingivitis and periodontitis.gingivitis

Gingivitis is an inflammation of the gingiva, or gums. It is characterized by tender, red, swollen gums that bleed easily and may cause bad breath (halitosis). Gingivitis can be treated by good dental hygiene, proper diet, and stopping smoking. Untreated gingivitis can lead to periodontitis.

Periodontitis occurs when the gum tissues separate from the tooth and sulcus (Me, here. That means  the space between the tooth and the gum.) forming periodontal pockets. Periodontitis is characterized by:

Gum inflammation, with redness and bleeding

Deep pockets (greater than 3 mm in depth) that form between the gum and the tooth

Loose teeth, caused by loss of connective tissue structures and bone

Plenty of space for bacteria to sneak in and attack your already compromised immune system.

I realize this is light weight research for those who are already suffering from these ailments, but hoped only to enlighten those of us who’d never even considered these possibilities and maybe, just maybe, help you understand just a bit better.

Say, if you live in Arizona, don’t forget about this:

free Path to Wellness health screening in Mesa at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30 this Saturday.

Until next week,Digital Cover Part 2 redone - CopyDIGITAL_BOOK_THUMBNAIL

Keep living your life!