Sex?

I know, I know. When you see that question on an application, you want to answer ‘yes,’ but you’re only given the choice of male or female. Well, at least that’s my experience. Okay, got that out of the way.

Way back in 2011, the following was included in my first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This was way before the website, Facebook page, the blog, the Instagram, Pinterest, Twitter, and LinkedIn accounts. Way before the articles, radio shows, and interviews, book signings, and talks about CKD. Come to think of it, this was way before SlowItDownCKD was born.

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….

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….

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. Any chronic disease can make a man or a woman feel less sexual….

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed….

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….

Well, what’s changed since I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? in 2010?

The National Kidney Foundation at https://www.kidney.org/atoz/content/sexuality now includes the following on their website:

It’s important to remember that people with kidney failure can have healthy marriages and meaningful relationships. They can fall in love, care for families, and be sexual. Staying intimate with those you love is important. It’s something everyone needs.

Many people think that sexuality refers only to sexual intercourse. But sexuality includes many things, like touching, hugging, or kissing. It includes how you feel about yourself, how well you communicate, and how willing you are to be close to someone else.

There are many things that can affect your sexuality if you have kidney disease or kidney failure — hormones, nerves, energy levels, even medicine. But there are also things you and your healthcare team can do to deal with these changes. Don’t be afraid to ask questions or get help from a healthcare professional.

DaVita at https://www.davita.com/kidney-disease/overview/living-with-ckd/sexuality-and-chronic-kidney-disease/e/4895 also offers advice:

Once again, it’s important to remember, you are not alone.

There are no limits with regard to sexual activities you may engage in as a patient with renal disease, as long as activity does not place pressure or tension on the access site, causing damage. (Me: This is for advanced CKD.)

If you are sexually active, practicing safe sex and/or using birth control are needed, even if you think you may be physically unable to have children.

Activities such as touching, hugging and kissing provide feelings of warmth and closeness even if intercourse is not involved. Professional sex therapists can recommend alternative methods as well.

Keeping an open mind and having a positive attitude about yourself and your sexuality may lower the chances of having sexual problems.

There are both medical and emotional causes for sexual dysfunction. The reason for your dysfunction can be determined through a thorough physical exam in addition to an assessment of your emotional welfare and coping skills.

Relaxation techniques, physical exercise, writing in a journal and talking to your social worker or a therapist can help you to feel better about your body image and/or sexual dysfunction.

Resuming previous activities, such as dining out or traveling, as a couple or single adult, can be helpful.

Provide tokens of affection or simple acts of kindness to show you care.

Communicate with your partner or others about how you feel.

According to the Kidney Foundation of Canada at file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Sexuality%20and%20CKD.pdf, these may be the causes of sexual problems in CKD.

Fatigue is a major factor. Any chronic illness is tiring, and chronic kidney disease, which is often accompanied by anemia and a demanding treatment, practically guarantees fatigue.

Depression is another common issue. Almost everyone experiences periods of depression, and one of the symptoms of depression is loss of interest in sexual intimacy.

Medications can also affect one’s ability or desire to have intercourse. Since there may be other medications which are just as effective without the side effect of loss of sexual function or desire, talk to your doctor about your pills.

Feelings about body image Having a peritoneal catheter, or a fistula or graft, may cause some people to avoid physical contact for fear of feeling less attractive or worrying about what people think when they look at them. (Me: Again, this is for late stage CKD.)

Some diseases, such as vascular disease and diabetes, can lead to decreased blood flow in the genital area, decreased sexual desire, vaginal dryness and impotence.

It looks like the information about CKD and sexuality hasn’t changed that much, but it does seem to be more available these days.

Until next week,
Keep living your life!

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Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/ :

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

Memories of Another Sort

When I was teaching Creative Non-Fiction at Phoenix College, I got into the habit of taking my classes to The Poisoned Pen, an award winning independent book store here in Arizona. I wanted them to hear well known authors talk about their writing process and see that these people were human beings just as they, my students, were. I retired from teaching several years ago, but I still go to writers’ workshops at the Pen. Last time I was there, I stumbled upon an advance copy of a book by Lisa Stone.

What’s an advance copy? It means either Advance Reading Copy of Advance Review Copy – depending upon who you talk to and is abbreviated ARC. TCK Publishing at https://www.tckpublishing.com/advance-review-copies/ informs us:

“Big traditional publishers often print thousands of ARC copies to send out to trade reviewers, bloggers, booksellers, librarians, and other people who can generate word of mouth for the book. In today’s technological environment, digital ARCs are gaining rapidly in popularity, sent out in email blasts and through various online services. ARCs are also used in giveaways and contests to give ordinary readers early access to books in an effort to build buzz.”

Lisa Stone, the author of the ARC of The Darkness Within (the one I picked up), is the nom de plume of Kathy Glass. She’s a bestselling British author who wrote about cellular memory – alternately called cellular memory phenomenon – after organ transplant. I was transfixed. We all know I rarely write about transplantation, but today I am. Here’s a reminder from SlowItDownCKD 2015 as to just what that is:

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

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

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

Now for the biggie: what is cellular memory? According to Medical Daily at http://www.medicaldaily.com/can-organ-transplant-change-recipients-personality-cell-memory-theory-affirms-yes-247498:

“The behaviors and emotions acquired by the recipient from the original donor are due to the combinatorial memories stored in the neurons of the organ donated. Heart transplants are said to be the most susceptible to cell memory where organ transplant recipients experienced a change of heart.”

Lisa Stone’s protagonist had a heart transplant and his personality became that of his donor. Far fetched? Maybe.

But what about the case of Demi-Lee Brennan, the Australian young lady who had a liver transplant that changed her blood type and immune system back in 2008? The Sydney Morning Herald at http://www.smh.com.au/news/national/transplant-girls-blood-change-a-miracle/2008/01/24/1201157559928.html included this quote from one of her doctors.

“We didn’t believe this at first. We thought it was too strange to be true,” Dr Alexander said. ‘Normally the body’s own immune system rejects any cells that are transplanted … but for some reason the cells that came from the donor’s liver seemed to survive better than Demi-Lee’s own cells. It has huge implications for the future of organ transplants.’”

And those who have received kidney transplants? Is there anything to report about cellular memory there? I turned to the Daily Mail, a British newspaper, at http://www.dailymail.co.uk/health/article-533830/My-personality-changed-kidney-transplant–I-started-read-Jane-Austen-Dostoevsky-instead-celebrity-trash.html#ixzz4t3Ml4sAt and found this:

“’A spokesman for UK Transplant said: ‘While we are aware of the suggestion that transplant recipients take on aspects of the personality of the organ donor, we are not aware of any evidence to support it.

While not discarding it entirely, we have no reason to believe that it happens. We would be interested to see any definitive evidence that supports it.’

Examples cited as proof of cellular memory include a U.S. woman terrified of heights who became a climber and a seven-year-old girl who had nightmares about being killed after being given the heart of a murdered child.”

The Liberty Voice, a publication that is new to me and seems to be part of The Guardian, at http://guardianlv.com/2013/06/organ-transplants-cellular-memory-proves-major-organs-have-self-contained-brains/ had the sort of background information I was looking for:

“In our modern culture, cellular memory was first studied in heart transplant recipients when the patients displayed strange cravings, change in tastes, cravings and mild personality. Major organs like the heart, liver, kidney, and even muscles are known to contain large populations of neural networks, which are self-contained brains and produce noticeable changes. Acquired combinatorial memories in organ transplants could enable transferred organs to respond to patterns familiar to the organ donors, and it may be triggered by emotional signals. Science discovered evidence that nervous system organs store memories and respond to places, events, and people recognized by their donors.

Gary Schwartz has documented the cases of 74 patients, 23 of whom were heart transplant recipients. Transfers of memories have not been reported in simpler transplants like corneas because they don’t contain large population of neurons. Dr. Andrew Armour a pioneer in neurocardiology suggests that the brain has two-way communication links with the “little brain in the heart.” The intelligence of neural brains in organs depends on memories stored in nerve cells.”
You can find the Schwartz study at http://www.newdualism.org/nde-papers/Pearsall/Pearsall-Journal%20of%20Near-Death%20Studies_2002-20-191-206.pdf.

Since I didn’t know the publication, I checked on some of the contributors…especially since the documentation was on such a small population. Well, will you look at that; Gary Schwartz is a local teaching at The University of Arizona. This is his faculty entry at http://neurology.arizona.edu/gary-e-schwartz-phd  

“Dr. Schwartz is Professor of Psychology, Medicine, Neurology, Psychiatry and Surgery. He is the Director of the Laboratory for Advances in Consciousness and Health (LACH, formerly the Human Energy Systems Laboratory). After receiving his doctorate from Harvard University, he served as a professor of psychology and psychiatry at Yale University, director of the Yale Psychophysiology Center, and co-director of the Yale Behavioral Medicine Clinic. Dr. Schwartz has published more than four hundred scientific papers, edited eleven academic books, is the author of several books including The Afterlife Experiments, The Truth About Medium, The G.O.D. Experiments, and The Energy Healing Experiments.”

As for Dr. Armour, his full name seems to be Dr. John Andrew Amour. I found a host of books he’s edited or written and conferences where he’s spoken.

I’m convinced cellular memory exists. I leave it up to you if you can – or even want to – accept this theory.

Until next week,
Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

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!

How Did It Get Political?

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

Ratio: Is That Like Rationing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

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!

At Last: Cuba

img_4287I’ve been saying for a couple of weeks now that I would write about Cuba, or rather The Republic of Cuba since that is the country’s official title. That’s where I spent my Groundhog’s Day 70th birthday in the company of my husband, brother, and sister-in-law. By the way, whenever we travel together, they are the best part of the trip no matter what we see or where we go.

But I digress; Cuba is a beautiful country with friendly people and colorful buildings painted in those colors the government approves … in addition to free education and free medical care. Considering Cuba is a country run by The Communist Party, maybe this universal medical and education isn’t as free as we might think.

Let’s take a look at the education first since you can’t have nephrologists without education. While there is free education, you need to be loyal to the government and perform community service as the ‘price’ of receiving it. I wasn’t clear about how you demonstrated “loyal to the government,” but the Cubanos (as the Cuban people refer to themselves) politely declined to discuss this.

The education includes six years of basics of reading, writing, and arithmetic – the same 3 Rs we study in grade school in the USA. After that, there are three years of img_4006middle school with traditional school subjects that are taught pretty much anywhere. But then things change. Cubanos can attend what we might consider a traditional high school for three years or a vocational school for three years.  This is also when marching in parades and community service begins.

Nephrologists would have chosen the traditional high school. After that, there’s another five to six years of university for their medical degree. Not everyone attends university; students need to pass certain exams in order to be allowed to attend… something we’re used to hearing. So now our doctor has become a doctor. What additional education is needed to become a nephrologist?

I tried to question the people I met in ports of call, but again they declined to answer in full. From the little bit I got from them and the even less I could garner from the internet: all medical students need to do a residency in General Medicine. If you want to go on to a specialty – like Nephrology – you need to do an additional residency in that field.

Well, what about the medicine itself? What do Cubano doctors know about nephrology?

According to Radio Angulo – Cuba’s information radio – on November 23 of last year,

img_4040“The positive development of this specialty began with the triumph of the Revolution in 1959, as Dr. Charles Magrans Buch, full professor and professor emeritus, told Granma International. Magrans began practicing his profession in 1958 in the Clinico de 26, today the Joaquin Albarran Clinical-Surgical Teaching Hospital, home to the Dr. Abelardo Buch Lopez Institute of Nephrology.”

Granma International describes itself as The Official Voice of the Communist Party of Cuba Central Committee.

As for the quality of the medical schools,

“…Cuba trains young physicians worldwide in its Latin American School of Medicine (ELAM). Since its inception in 1998, ELAM has graduated more than 20,000 doctors from over 123 countries. Currently, 11,000 young people from over 120 nations follow a career in medicine at the Cuban institution.”  You can read more about ELAM in Salim Lamrani’s blog in the 8/8/14 edition of The Huffington Post at http://www.huffingtonpost.com/salim-lamrani/cubas-health-care-system-_b_5649968.html

Yesterday, I stumbled upon this which is also from Granma: “The Cuban Institute of Nephrology is celebrating its 50th anniversary this December 1st, having provided more than 5,000 kidney transplants and 3,125 patients with dialysis.”

So, nephrology is not new to Cuba nor is there a dearth of opportunities to study this specialty. Keep in mind that this is government run health care. There aren’t img_4142any private clinics or hospitals in Cuba.

And how good is that health care system? This is from the 4/9/14 HavanaTimes.org:

“Boasting health statistics above all other countries in Latin America and the Caribbean (and even the United States), Cuba’s healthcare system has achieved world recognition and been endorsed by the World and Pan-American Health Organizations and the United Nations.”

HavanaTimes.org is not part of the government. Some of their writers have been blacklisted, while others have been questioned. Somehow, that makes me feel more secure that their information is not the party line but more truthful. I don’t mean to say the government is dishonest, but I prefer information from private sources in this case.

Before you get your passport in order and book a trip to Cuba for medical reasons, you should know  “…it is not legal for Americans to go to Cuba as medical tourists….” This information is from Cuba Medical Travel Adviser & Guide at http://www.doctorcuba.com/. What I found curious is that it is not illegal for Cuban doctors to treat American patients in Cuba. Do Americans disguise themselves as being from other countries to obtain the low cost, high quality medical treatment Cuba has to offer? How can they do that if a passport is needed to enter the country? Maybe I’m naïve.

img_4213Cuban medicine follows a different model than that of the USA. A general (family) doctor earns about $20 a month with free housing and food.  His or her mornings are spent at the clinic with the afternoons reserved for house calls. Doctors treat patients and/or research. Preventive medicine is the norm with shortages of medication and supplies a constant problem.

You have to remember that I have limited access to information about Cuba (as does the rest of the world), and am not so certain my even more limited Spanish – which is not even Cubano Spanish – and the limited English of the Cubanos I spoke with has allowed me to fully understand the answers I was given to the questions I asked.

It’s been fun sharing what I think I learned with you since it brought the feeling of being in Cuba right back. Can you hear the music?  I’ve got to get up to dance.

Until next week,

Keep living your life!IMG_2979

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!

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!

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

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

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

What’s Your Type?

Every Sunday night, I take a blues dance lesson taught by my daughter, Abby Wegerski, as Sustainable Blues Phoenix at Saint Nick’s Tavern and SlowItDownCKD 2015 Book Cover (76x113)stay to dance to the music of the live band – the Rockets 88s – for a while. Last week, my good buddy, Karla Lodge, organized a fund raiser. I like to support Karla in whatever she does, so I decided to push myself and go to the fundraiser (a half hour drive each way) after dancing.

To make it even more fun, Bill Weber, the creator of Avery’s World, was in from Los Angeles visiting a relative in Tucson. They drove up to Scottsdale to join us at the fundraiser.  Now that you’ve been introduced to some of the people and events in my life, forget them. Here’s the important part: as we were having dinner, my Chronic Kidney Disease Awareness Advocacy came up. Bill’s relative lit up. It turns out Avery's Worldsomeone very close to her is a transplantee. Her first question to me: What’s your blood type?

I explained I was in the moderate stages of CKD and not anywhere near transplant, but she insisted it was very important to know your blood type when you have CKD. She didn’t know why. I didn’t know why…so that’s the subject of today’s blog.

Here I am starting in the middle again. We all have a blood type.  That’s fairly common knowledge, but what exactly are blood drawblood types? We’ll go about this a bit differently by defining blood group, which is a synonym for blood type. To paraphrase a song we used to sing during the two times I went to a two week stint at summer camp on a farm, “I know because the dictionary tells me so.” In this case it’s the Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/blood%20group:

“one of the classes (as those designated A, B, AB, or O) into which individuals or their blood can be separated on the basis of the presence or absence of specific antigens in the blood —called also blood type

What is itFor those of you who are wondering, an antigen is something that’s introduced to the body and causes the body to produce antibodies (think germs). As an undergraduate in good old Hunter College of The City University of New York I learned that ‘anti’ is a prefix meaning against. ‘Gen’ is a root which means causing something to happen.  Got it. An antigen causes something to happen against something else. In this case, your red blood cells.

4I see a hand raised in the back of the room. (This does remind me of when I was teaching college out here in Arizona.) Why are there four types you ask? Good question. Anyone have the answer? I don’t either, so let’s look it up together. Look! The Smithsonian Institute sums it up in one sentence: “But why humans and apes have these blood types is still a scientific mystery.” Now I don’t feel so uninformed that I couldn’t answer the question. Anyway, you can read more at: http://www.smithsonianmag.com/science-nature/the-mystery-of-human-blood-types-86993838/#JwJKP357AyhDRy4R.99 and, yes, this is THAT Smithsonian Institute.  Where, oh where, is Bones when you need her?Bones-tv-show-f38

Did you know there are numerous other blood groups, too? Usually people don’t – unless they happen to be a member of one of them. The same link above can offer you more information about these since we’ll be sticking to the four major ones today. You should know that your blood type is inherited.

Again, why is it important to know your blood group?  Thank you to Disabled World at http://www.disabled-world.com/calculators-charts/blood-chart.php for the following chart, which demonstrates the answer.

blood-donor-match

They also offer a simple explanation of why blood groups are so important:

“Blood types are very important when a blood transfusion is necessary. In a blood transfusion, a patient must receive a blood type compatible with his or her own blood type. If the blood types are not compatible, red blood cells will clump together, making clots that can block blood vessels and cause death.

blood_test_vials_QAIf two different blood types are mixed together, the blood cells may begin to clump together in the blood vessels, causing a potentially fatal situation. Therefore, it is important that blood types be matched before blood transfusions take place. In an emergency, type O blood can be given because it is most likely to be accepted by all blood types. However, there is still a risk involved.”

As a CKD patient for the last nine years, I have never needed a blood transfusion. Come to think of it, I’ve never needed one in my almost 70 years on this planet. But that’s not to say I may not need one sometime in the future… or that you might not need one. But I’m interested in why it’s especially important to know your blood type as a moderate stage CKD patient.

I scoured What Is It and How Did I Get It? Early Stage Chronic Kidney 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. Although there is abundant discussion of how the kidneys filter the blood, why their effectiveness in this filtering diminishes in CKD and the production of red blood cells, there is no mention of blood type in any of the books.

IMG_1398

I’m beginning to wonder if Bill’s relative meant that knowing your blood type is important in general, not especially if you have CKD. Karla, a Physician’s Assistant, was strangely quiet during this part of the discussion. I attributed that to her being pre-occupied with the fundraiser she was running… maybe that wasn’t the reason.

questionAlthough I didn’t find the answer to my question, I did run across some intriguing theories during my research. I’m not endorsing them since I know so little about them, simply offering you the information.

The Blood Type Diet at http://www.dadamo.com/ (I do remember a colleague being interested in this one about a decade ago.)

Blood Type and Your Personality at http://bodyecology.com/articles/link_blood_type_personality_diet.php

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!

What If…

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

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

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

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

According to DaVita.com, Stage 3A means:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Poor mental health linked to reduced life expectancy

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Up and Down…and Up…and Down

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

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

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

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

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

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

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

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

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

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

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

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

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

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

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

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

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

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

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

Many thanks to DaVita.com for refreshing my memory about each stage.

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

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

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

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

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

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

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

Until next week,Book Cover

Keep living your life!

Facebook and CKD

Victorian clockIt’s been a slow weekend with me really wondering if I were sick or just fatigued.  Fatigued won, so here I am back on track – just a little slower.  I love it when things work out the way I want them to, even if it’s an almost the way I want them to.

I’m lucky.  I have plenty of support here from Bear, the daughters and the almost sons-in-law, and the neighbors.  But many people don’t have others to talk to, much less do for them.  That’s why I’ll be writing about online support groups today.

The blog has a major presence on Facebook.  That started with Aaron Milton’s invitation to join P2P, (Peer To Peer) – Support for The Chronically Ill and Friends & Family several years ago.

This is a closed group of 6,198 members with invitation by email. As with most closed groups, the idea is for the members to be able to freely discuss whatever troubles them.  I’ve also noticed lots of support for other than illness issues here… and loads of sharing happinesses.Book Cover

Although I do not have a transplant, shortly after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published, Rex and Linda Maus asked me to post this weekly blog on The Transplant Community Outreach’s page under the heading KIDNEY MATTERS.

I remember trying to dissuade them from this idea since I only knew about early stage, but they were adamant… and I’m still posting the blog there. This is a public support page with 5,633 members.  I’ve received a number of comments indicating that all stages of CKD patients are welcome.TCO

Then there’s The Renal Patient Support Group (RPSG) Facebook & BlogSpot, another closed group, with 5,305 members. I find this group extremely interactive concerning rides, requests for new information, and information about local treatment centers that you won’t find elsewhere. Their Shahid Muhammed has added a link to this blog on their page.

people talkingChronic Kidney Disease, End Stage Renal Failure is a smaller (71 members) closed group.  It is quite homey and inviting. When I go there, I feel like I’m visiting my neighbor.  That doesn’t mean it’s not worthwhile, though.  Sometimes you need that homey feel to understand what you’re reading. Betheny Whipple does a fine job of welcoming the members.

Kidney Disease, Diet Ideas, and Help 1 with 7,611 members is another closed group.  You can usually like a closed group to join or inbox the administrator.  This is how they describe the group:

“This is a closed, private group run by genuine Kidney patients for people with Kidney Disease including Dialysis to Transplant also for Carers to be able to offer and receive their support and knowledge in complete privacy from your friends on Facebook, to cover all aspects including discussing openly and sharing ideas on how each of our members is coping , how it affects us in day to day living, medications, side effects also their Diets , Drinks and lifestyle in accordance to our individual requirements and to also share ideas and recipes for CKD.
ALWAYS SEEK MEDICAL ADVICE BEFORE TRYING ANYTHING NEW. “

All the Facebook support groups remind you they are not doctors.  It is important for you to remember that so you check with your nephrologist before trying anything new.  Better safe than sorry.cadesus

Notice, too, that most support groups welcome family, friends, caregivers, and others somehow involved with the kidney disease patient.  The groups usually do not discriminate, but welcome all who are interested.

One of the newer groups is Kris Osborne’s Women’s Renal Failure Support Group, a closed group with 579 members. There is a free give and take about (surprise!) specifically women’s issues.  While I’m post-menopausal myself, I find I especially enjoy the younger women’s baby-shots-5posts about whether and if they can become pregnant, the hints and advice they give each other, and their generous support along this difficult journey for CKD sufferers. (Must be the wanna-grandmother in me rooting them along.)

Larry W. Green’s People of Color Renal, Kidney, Dialysis, and Transplant Support  is not restricted to people of color, although there are many posts that deal specifically with this group of particularly at risk for CKD people. It is a closed group with 207 members.  I think he nails the problem with reaching minorities in his description:1399816_10151944012192488_153026929_o

“People of Color Renal, Kidney, Dialysis and Transplant Support Group is for sharing information on people who are close to renal failure, dialysis or on dialysis or who have had a kidney transplant in the hopes of educating and offering support. Renal failure is the most prevalent among the minority communities but they are the least informed with options of dealing with this epidemic. This group is just not for minorities only but for all concerned with End Stage Renal Disease.”

By the way, the key word in all these support groups is ‘sharing.’

There are many other groups I post in because I feel they are so worthwhile in their efforts to educate CKD sufferers by sharing information AND by allowing them to vent, question, rant, and – of course – providing an opportunity for their members to support each other.sad face

Some of the others are: GM Kidney Information Network, Kidney/Renal Failure Support Group Durban, Kidney disease isn’t for sissies, Kidney Disease is Not a Joke Group, Kidney Disease in Saudi Arabia, Kidneys-R-Us (Not an organ selling site.  This is illegal in the U.S.), World Kidney Network, UK Kidney Support, National Kidney Foundation, Canadian Kidney Connection, and The Bhutan Kidney Foundation.

I know I’ve left out some really good support sites, but I’ll plead lack of space.  Some of the foreign sites are excellent and it’s fun to see how they deal with CKD differently than we do in the U.S.  Well, maybe my sense of fun is different from yours, but I enjoy it.

I haven’t included any addresses because all you need to do is go to Facebook, and cut and paste the group name in the search bar.  Ready, set, go!

Wait! I do want to end on a personal note of congratulations.  Friday night was the August birthday dinner for my sweet husband – Bear, my youngest daughter – Abby, and our wonderful almost son-in-law, Sean.  There were three different kinds of goodies, including ice cream cupcakes, a confetti cake (that I baked) and a Black Forest Cake.  Guess who didn’t have any of these.firworks

Until next week,

Keep living your life!

It’s Still National Kidney Month

And I still have pre diabetes.  It sounds like something someone made up and maybe it is, but my A1C test result is still high and getting higher despite the changes I’ve made in my eating habits.  When better than National Kidney Month to explain why this could be a problem for those of us with Chronic Kidney Disease?kidney

We’ll need a little background here (as usual).  First, what is A1C test?  According to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585,

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I’m sure you noticed how often I rely on The Mayo Clinic for definitions.  I find their simple explanations make it easier for me (and my readers) to understand the material.  I also like that they explain in their explanations. These phrases surrounded by dashes or in parentheses further clarify whatever the new term may be.

Okay, so we can see why this needs to be tested.  Now, what does it have to do with diabetes and what is diabetes anyway? This time I looked for a medical dictionary and found one at our old friend The Free Dictionary.  It’s at http://medical-dictionary.thefreedictionary.com/Diabetes+Mellitus. The mellitus is there because that’s how members of the medical field usually refer to diabetes – as diabetes mellitus. This is what I found there,

“Diabetes mellitus is a condition in which the pancreas no longer produces enough insulin or cells stop responding to the insulin that is produced, so that glucose in the blood cannot be absorbed into the cells of the body. Symptoms include frequent urination, lethargy, excessive thirst, and hunger. The treatment includes changes in diet, oral medications, and in some cases, daily injections of insulin.”

Book CoverIn What Is It And How Did I Get It? Early Stage Chronic Kidney Disease I define glucose as the main sugar found in the blood.  I go on to explain that in diabetes, the body doesn’t adequately control natural and ingested sugar.  The Free Dictionary definition shows us how the body loses control of insulin production and what it means for the glucose levels… which is what the A1C test measures.

So… PRE diabetes? What’s that?  Funny you should ask. The English teacher in me can tell you that pre is a prefix (group of letters added at the beginning of a word that changes its meaning) meaning before.  Pre diabetes literally means before diabetes which makes no sense to me because that would mean everyone without diabetes was pre diabetic.  It helped me understand when I was told pre diabetes was formerly called borderline diabetes (a much better term for it in my way of thinking).

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:

“When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.”  KIDNEYS!

You can read more about this at http://www.webmd.com/diabetes/guide/what-is-prediabetes-or-borderline-diabetes.

Well, then what’s a normal level you ask? According to my primary care physician, 4.8-6.0 is normal BUT this range needs to be adjusted for Chronic Kidney Disease patients.  I (what else?) looked this up at Lab Tests Online http://labtestsonline.org/understanding/analytes/a1c/tab/test and found more of a range:

  • A nondiabetic person will have an A1C result less than 5.7%.
  • Diabetes: A1C level is 6.5% or higher.glucose
  • Increased risk of developing diabetes in the future: A1c of 5.7% to 6.4%

My result was 6 in the emergency room last November.  During my regularly scheduled CKD yearly lab last September, it was 5.9 with a big H (for high) next to it.  The August before that it had been 6.1.  Back in January of last year, it was 6.  I seem to be staying in a very close range for over a year, but it’s still pre diabetes.

All right then, what’s normal for a CKD patient?  I don’t know.  Life Options says just keep it under 6.5 (http://lifeoptions.org/kidneyinfo/labvalues.php). The rest of the internet seems to think the A1C results need to be adjusted only if you have both diabetes and CKD.  Looks like my nephrologist and I will have to have another talk about this.

You would think the danger of an elevated A1C  would be diabetes, but I’m wondering if the damage to those tiny blood vessels may be worse.

diabetes_symptomsHave I raised questions in your mind?  Is your A1C normal?  How do you tell if different sources hold different values as normal?  Time to ask your doctor.  And time to remind you again, that I am NOT a doctor, just a CKD patient with loads of questions and a willingness to research some answers for us all. Something to consider.

Other things to consider: have you had your kidneys tested?  It’s a simple blood test and a simple urine test.  Sure you don’t have the time, but no one does.  Then again, it’s sure worth it to avoid the need for dialysis (now THAT takes time) and a transplant down the road.

You know that 59% of our country’s population is at risk for CKD, but did you know that 13 million U.S. citizens have undiagnosed CKD?  That’s scary.  Take the test.

Here’s a link to the letter I wrote for Dear Annie – a nationally syndicated column – for National Kidney Month: http://m.spokesman.com/stories/2014/mar/10/annies-mailbox-learn-risk-factors-of-kidney/ It appeared on March 10, 2014 just prior to March 13 World Kidney Day.Nima braceket

Above is a picture of Nima. She’s pointing to the bracelet I gave her that she’s wearing so that I would be with her on last year’s Greater New York Kidney Walk while I was actually ill back home in Arizona.

Until next week (and the last day of National Kidney Month),

Keep living your life!

Oh, By The Way….

In honor of National Kidney Month, I asked my daughter Nima Beckie (blogger extraordinaire at Is What It  Is) to guest blog explaining what it’s like to be the grown child of a Chronic Kidney Disease patient.  I think she’s outdone herself (of course, I might just be a smidgen prejudiced, but I don’t think so.)nima kidney

Several years ago my mom, Gail Rae-Garwood, came to us all and told us she’d been diagnosed with Chronic Kidney Disease. At the time none of us had the first clue what that meant (Actually, at the time I might have thought it was a distant cousin of an EKG.) and couldn’t quite put two and two together.

I’m caring by nature and want to help, almost to the point where it can become overbearing. From my uneducated fear came wanting to make sure my mother was getting enough rest if we were out when I was visiting and asking all the time, “Have you had enough? Do you need a rest?”

laIf you’re an adult child with parents who have kidney disease…DON’T DO THIS!!! What I learned along the way is that while your parents and loved ones truly appreciate your care and concern, they don’t want you babying, coddling, or suffocating them.

Here’s what you CAN do instead. Ask questions and educate yourself. Get involved in the kidney community when you can. Show your support that way.

I got involved because my mother wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I helped out by acting as a reader for her, and then helping her approach the somewhat awkward (for her) task of Social Media.

The more I went back and read her blog, or helped out with Facebook, or Twitter, or read chapters of the book, the more educated about Chronic Kidney Disease I became.

I know that too much information thrown at you once can be like “Whoa?! What?!” Honestly, I still refer to the blood test I get to check for kidney disease as a BUN (the kind you eat) as opposed to a B.U.N., and am still not in the least bit fluent in medicalese.Book Cover

Last October, I took a big step—actually about eight miles worth of them. It was important to me to not just be an activist for the kidney community online but in person as well.

I made my way to Foley Square in New York City near where I live (close to my Mom’s hometown), donned an orange tee-shirt, and spent my morning volunteering for the GNYKF (Greater New York Kidney Foundation).

I helped others who were there to walk sign the banner that would be carried in front of the walkers. I’d ask each person, “Why are you here?” “Who are you walking for today?” So many faces, and so many stories and there isn’t one that didn’t touch my heart.ny pix

A lot of people were there for there for their family members, some who sadly didn’t make it. One was a dad whose 12 year old son was waiting for his second transplant, as the first one didn’t take. He was so proud of his son, but you could see the fear and hurt for his son in his eyes.

Another woman looked at me, and said, “I’m here because I’m waiting for a kidney. Is that a good enough reason?” I quickly walked around to the other side of the table to give her a big hug. I told her, just like, I’ll telling all of you. “I want you to know you are my hero. I know how hard you fight everyday, and I know it’s not always easy. I see you.” She said her husband told her that all the time, and she never believed him.

Another little girl was there because a girl in her class “…was sick with kidney disease” and she wanted to help her. I asked her if she knew where her kidneys were… (Sort of…). I showed her, and told her, “You are doing an awesome thing for your friend and should be so proud of yourself.” Then I made her give herself a pat on the back (and may have whispered to her mom that there was a face painting table in the corner 😉 )GNY

Lastly, I walked with so many people all wearing orange all the way over the Brooklyn Bridge and back – all in support of the same cause, all hoping for a cure. On the way back, I managed to snap a picture of a man taking his orange bandana from his head, and tying it at the halfway point of the Brooklyn Bridge for people fighting kidney disease everywhere.

There really are no words for moments like that. I’d worn the bracelet my mom bought for me not long after she’d moved to Glendale so she’d be with me. As I got to the finish line, the song “New York State of Mind” by Alicia Keys was playing, which was just so perfect, since I was walking for my mom in her home state. I crossed under the balloons, and called my mom.

She couldn’t pick up because she was having a bad day. Severe bronchitis from a weakened immune system. I left a voicemail, “I want you to know, this is for you. I see everything you do. I know how hard you work, even on days when it isn’t always easy, because you don’t feel well. I know how much you help people. You are and forever will be my hero. I love you.” I’ll let her tell you what she said in response…I still have it saved on my phone.sad

Here’s my last piece of advice, and it’s a biggie. Get yourself tested. Every time you go to a doctor, it’s up to you to mention to your doctor, ”Oh by the way…I have a family member that has kidney disease,” and request both your B.U.N and creatinine levels. This is simple blood work that takes two seconds but, in the end, could save you a lot of heartache.

Actually, I want to take that back a second, EVEN IF YOU DON’T have a family member with kidney disease, you should be getting checked regularly and educating yourself.

kidney-month-2014-v1More than half the population in this country is at risk for kidney disease and many of them don’t know it. That’s an awfully big number, and it doesn’t need to be. A smart lady who you may know raised me to believe that knowledge is power.  Educate yourselves, educate your friends, and get tested…Happy National Kidney Month!!

Well done, honey.

Until next week,

Keep living your  life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

SlowItDown More

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

You, You’re Driving Me Crazy: Dedicated to Vitamin D.

I hereby declare today Vitamin D Day. Why? Well, you see, I had this question from a reader about the conflicting reports on the value of taking supplemental vitamin D.  I had hoped my research would have some kind of defining conclusion.  Hah!  Be prepared to have your head spin.sad face

Last October I read a New York Times blog by Nicholas Bakalar regarding a study questioning vitamin D supplementation. According to University of Aberdeen’s senior lecturer and leader of the study, Helen M. McDonald, “The study actually shows that vitamin D does not protect you against heart disease….”

That sounds straight forward enough.  However, the study also discovered no effects on C-reactive protein [a protein in the blood which may indicate artery inflammation], LDL [low density lipoprotein – the kind that forms blockages in your arteries], HDL [high density lipoprotein which cleans out the blockages just mentioned], total cholesterol [all the fat in your blood], triglycerides [the major form of fat the body stores], insulin production, or blood pressure. Whoa, ladies and gentlemen.  That is quite an array of areas there.  You can find this blog at: http://well.blogs.nytimes.com/2012/10/22/study-questions-benefit-of-extra-vitamin-d/?smid.

Wait a minute.  In November of last year, Washington University School of Medicine published a study in the Journal of Biological Chemistry that indicates vitamin D could prevent atherosclerosis [clogged arteries], an important aspect of heart health, in diabetics. The authors of the study, Dr. Amy E. Riek and Dr. Carlos Bernal-Mizrachi, made a point of saying they did  not know if vitamin D is capable of reversing atherosclerosis in diabetics.  But doesn’t that contradict the previous article’s finding that vitamin D’s effect on diabetes is questionable?  Decide for yourself: plaquehttp://www.eurekalert.org./pub_releases/2012-11/wus0-vdm111312.php. .

In a more germane article printed that same month, Loyola University Health System announced that under the Institute of Medicine’s new guidelines, only 35.4 % of Chronic Kidney Disease sufferers would be deemed as having insufficient levels of vitamin D rather than the 76.5% under the older guidelines. These numbers are based on a survey of patients. Keep in mind that CKD has been linked to low vitamin D levels.

The percentage of healthy people who would no longer be considered as having insufficient levels of vitamin D would also drop by more than half. Here’s the kicker: while it is accepted that vitamin D is needed for your bones, there is a question about its role in “…cancer, heart disease [ that’s what the blog above discussed], autoimmune diseases and diabetes [what the study above deals with]….” What concerns me is that too much vitamin D can adversely affect the heart AND the kidneys.  This  article was a bit more medical in terminology than I’m comfortable with so I’d suggest you take a look at it yourself: http://www.eurekalert.org/pub_releases/2012-10/luhs-n8m101812.php.

In March of this year, the Journal of the American Society of Nephrology published a study stating, “Vitamin D supplements may help maintain kidney function in transplant recipients.”  Okay, so with the new guidelines you may be one of the close to 50% of Chronic Kidney Disease sufferers who no longer need vitamin D supplementation… until you receive a transplant?? Take a gander: http://www.eurekalert.org/pub_releases/2013-03/ason-Ivd032213.php.vitamin d pills

While you read this particular paragraph, keep the first study in mind – the one that decided vitamin D supplemental had no effect on blood pressure. In April, I read a NPR [National Public Radio] blog about The Brigham and Women’s Hospital’s small study with Blacks as their subjects.  This one found that vitamin D may lessen the risks of high blood pressure in Blacks.  Notice none of the other studies mentioned Blacks.  I really like this one because Blacks have a higher incidence of Chronic Kidney Disease and, as we know, high blood pressure is one of the leading causes of CKD. It’s written in laymen’s terms so you might enjoy reading it: http://www.npr.org/blogs/health/2013/04/05/175258469/study-hints-vitamin-d-might-help-curb-high-blood-pressure.Black

Concerning, diabetes, another New York Times blog by the same author as the first one states, ” A new study has found a strong correlations between low vitamin D blood levels and Type 1 diabetes.” Later in the blog, one of the authors of the study made a connection between Type 1 diabetes and other diseases that are prevented by vitamin supplements.  This was published the same month that the first Eurekalert article which stated the opposite was. You can find this one at : http://well.blogs.nytimes.com/2012/11/26/low-vitamin-d-level-tied-to-type-1-diabetes/?smi

While we’re on the topic of diabetes, on February 5th of this year, Nick Tate wrote on the News Max Health site, “New Harvard University research has found that adequate levels of the ‘sunshine vitamin’ cut the odds of developing adult-onset type 1 diabetes by half.” I wonder if he’s using the Institute of Medicine’s new guidelines? And what about the same Institute of Medicine’s claim that vitamin D’s role in diabetes is questionable?  You can read about the study – funded by the National Institute of Neurological Disorders and Stroke – at: http://www.newsmaxhealth.com/Diabetes/Vitamin-Prevent-Diabetes/2013/02/05/id/489047

So now we leave heart disease, Chronic Kidney Disease, diabetes, and transplantation to move down to the knees.  I have never heard that vitamin D can help with arthritic knees, but apparently others have. In July of this year, Medpage Today  referred to an article published on January 8th. It discusses a Brigham and Women’s Hospital “2-year trial [that] contradicts observational studies that had suggested higher levels of vitamin D might slow the progression the disease [knee osteoarthritis].”  Since I am one of the lucky ones (notice the dripping sarcasm) to enjoy this disease, I was surprised to come across this trial.  I do acknowledge the connection between vitamin D and bone health, but never thought of it as something to reverse bone damage.  Want to read the article for yourself?  Go to: http://www.medpagetoday.com/Rheumatology/Arthritis/36757?utm_content=&utm_medium.

This blog is getting too long, so we’ll continue with the vitamin D controversy next week.July 4th

On the home front, nothing much is happening since we’re dealing with Bear’s back issues.  That made for a quiet 4th of July weekend.  None of the kids was available so we made a teeny little bar-b-q just for us… and I was not quite well for three days after.  When you’re on the renal diet, you might be able to indulge a little here or there, but not a whole lot at one time.  Here’s hoping your Independence weekend was a glory of red, white and blue celebration.

Many thanks to Alex Gilman who tried desperately to cook us a dinner that was within my renal diet guidelines without even knowing what they were.  I was very taken with his efforts.

Until next week,

Keep living your life!

Peeking At Transplantation

ringLadies and Gentlemen: welcome to the first blog by Gail Rae-Garwood (Mrs. Paul A. Garwood), formerly Gail Rae.  Thank you for all your congratulations and good wishes! I have more former names than I’d like to admit, but I’m sticking with this one, just as I’m hoping to stick with my own two kidneys for the rest of my life… or as I say to Bear “whatever time we have left.”

I am not morbid but I’m also not the blushing bride my dear cousin Steve Bernard caricatured me as.  I’m just plain realistic. And that’s why we’ll take a little peek at transplantation today.  Remember that I’m not a doctor and I didn’t want to know anything about this ever.  But it is a fact in some lives.  Sure I don’t want to have one of those lives and I’m doing everything I can to avoid it, yet….

Do you know about the TransplantCommunityOutreach page on Facebook?  They asked me to be their kidney ‘expert’ right after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease                         was published.  I balked since I certainly didn’t feel like an expert and knew nothing about transplantation.  Linda and Rex Maus went back and forth with me until I understood they didn’t expect me to know everything, just to remind the transplantees what it had been like in the early stages and keep them informed about what new discoveries have been made since their own time in the early stages of chronic kidney disease.  I was comfortable doing that.

You already know that when your kidney function decreases to 10 or 15%, depending upon your nephrologist’s views, you need outside help.  By this I mean, from outside your body.  We timidly explored dialysis last week.  A word about that.  There is so much more that I’ve learned about dialysis while I was researching for that blog. If you’d also like to learn more – whether you’re at the point of needing it or not – I urge you to do more research on your own.The Table

Or, if you’re not comfortable researching, go to one of the national kidney organizations.  They will give you clear, simply stated explanations with diagrams and will list other sources. I would start with Medlineplus, a service of The National Institute of Diabetes and Digestive and Kidney Diseases at http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=renal+dialysis .

I went to Medline at http://www.nlm.nih.gov/medlineplus/kidneytransplantation.html for a definition of renal (or kidney) transplant:

“A kidney transplant is an operation that places a healthy kidney in your body. The transplanted kidney takes over the work of the two kidneys that failed, so you no longer need dialysis.

During a transplant, the surgeon places the new kidney in your lower abdomen and connects the artery and vein of the new kidney to your artery and vein. Often, the new kidney will start making urine as soon as your blood starts flowing through it. But sometimes it takes a few weeks to start working.

Many transplanted kidneys come from donors who have died. Some come from a living family member. The wait for a new kidney can be long.

If you have a transplant, you must take drugs for the rest of your life, to keep your body from rejecting the new kidney.”

I find people cringe at the thought of taking drugs for that long, but think of the alternative… or lack of one.  There is quite a bit of information packed into that concise definition.

Diagrams always help me understand when the words don’t.  You’d think that wouldn’t be the case for a writer, but I like to think of myself as the exception to the rule. (It saves face when I don’t remember what some of the terms in the definition mean.)  This is the clearest, simplest diagram I could find.faq_kidney_transplantation

A couple of reminders (taken from the glossary of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease):

  1. Arteries are the vessels that carry blood from the heart.
  2. Veins are the vessels that carry blood toward the heart.

In the last decade, there has been experimentation with taking the donor kidney laparoscopically. That means using extremely small instructions which require extremely small incisions into the abdomen of the donor. I haven’t seen any articles that are negative about this and it cuts down on the recovery time for the live donor.  Since we each have two kidneys and it is possible to live with one, someone who matches may donate a kidney to you.  Otherwise, you will receive something called a cadaver kidney, meaning one which comes from someone who has just died.

Recently, according to ScienceBlog at http://scienceblog.com/56571/donors-like-giving-up-kidney-through-belly-button/ , this marvelous procedure of removing donor kidneys laparoscopically has been further improved by using only one incision in the belly button which is lost within the navel folds once it is healed. The idea is to make it more comfortable for the living donor so that more living donors can be found.

As for the person receiving the kidney, you will be on anti-rejection drugs for the rest of your life.  Your body is designed to reject foreign bodies – including organs.  You’ll also need to pay attention to exercise, diet, sleep, and stress sort of like with ckd, only this is not a life or death matter…  not a keeping your GFR up matter.

Some people choose not to take on that challenge.  It was only through Cheryl’s death that I came to realize not everyone wants to prolong their life if it means doing what they don’t feel they can.

I know, I know, here I am a newlywed (one day now, folks) and I haven’t told you a thing about the wedding or the reception.  I simply felt that, logically, a blog on transportation had to follow the one on dialysis.  Again, I haven’t told you much more than the basics so if you want more, research.  Or comment and I’ll help you find more information.

Expect to cry and laugh with me next week as I weave highlights of the wedding into kidney information.  To my European readers, thank you so much for the volume of sales there!  To my US readers, don’t forget this Kidney Walk season.  Contact your local kidney organization for info on the walk in your area.Az. Kid Walk

Until next week,

Keep living your life!

Timidly Exploring Dialysis

We are a Landmark Education family; that is Nima, Abby, and I are all Landmark Education graduates.  Abby has taken many of their enlightening courses and was candidated as an Introduction Leader.

In other words, she demonstrated her willingness to bring Landmark Education to others and now knew enough about the program to be able to do so.  This is a big deal in the Landmark world and it was celebrated Friday night.

Of course Bear and I went to the celebration to support her.  We even got dressed up a little (this IS Arizona – people go to weddings wearing jeans.).  Since I recently retired – yes, again – from teaching, I went right to my teaching clothes to find something appropriate to wear tonight. landmarkqr

While I’ve only gained a few pounds (no, really), my body has finally decided to show my age.  Out went the tightly fitted dressy tee shirts that accentuated the belly.  Out went the fancy blouses with no room for the droopy bust. Out went the casual dress pants with their tight waistlines. Out went the maxi skirts that now reached the floor since I’ve shrunk.

And it struck me.  I looked something like the peritoneal dialysis patient Walter A. Hunt mentions in his book Kidney Disease: A Guide for Living: “ Peritoneal dialysis also causes weight gain and an increased waistline, which are mostly caused by fluid retention.  It may be difficult to find clothes that fit properly, because your abdomen may become quite large.”

I was reading the book on the recommendation of Mark Rosen from Facebook’s KIDNEY DISEASE AND DIET IDEAS AND HELP 1. Any book he recommends is worth a gander.  I had been looking for a newer book than mine that deals only with early stage chronic kidney disease. (There aren’t any as far as I could research.) What I didn’t realize is that Mr. Hunt wrote about dialysis and transplant in his book.

I began to wonder what else I don’t know about either of these medical procedures and ended up where I always do: MedlinePlus, a service of U.S. National Library of Medicine and National Institutes of Health  at: http://www.nlm.nih.gov/medlineplus/dialysis.html.  This is what I found there:

“When your kidneys are healthy, they clean your blood. They also make hormones that keep your bones strong and your blood healthy. When your kidneys fail, you need treatment to replace the work your kidneys used to do. Unless you have a kidney transplant, you will need a treatment called dialysis.thCAQ0P7T3

There are two main types of dialysis: hemodialysis and peritoneal dialysis. Both types filter your blood to rid your body of harmful wastes, extra salt and water. Hemodialysis  does that with a machine. Peritoneal dialysis uses the lining of your abdomen, called the peritoneal membrane, to filter your blood. Each type has both risks and benefits. They also require that you follow a special diet. Your doctor can help you decide the best type of dialysis for you.”

This may be old news to those of you who are already dealing with renal dialysis and it was to me, too, but what about those people who are still in early stage or who love someone in early stage?  They don’t need to be bewildered when (if) this becomes necessary for them down the road, the way they were when they were first diagnosed with Chronic Kidney Disease.

As much as I deplore the thought of dialysis – I can’t stand anyone fiddling with me, not even for a manicure or a massage – this may become a necessity somewhere down the line for me –  or you.  We all know I intend to be one of the 80% of CKD patients who never progress beyond stage 3… but what if I’m not?  What if you’re not?

I don’t know much about either kind of dialysis, but am learning by forcing myself to research and finish reading Mr. Hunt’s book.  This is something I have studiously avoided in the last five years but I think it’s time to grow up.  I may never need this information, but it doesn’t hurt to have it.

I’ll tell you this, though.  Even though it’s Passover right now and Easter was Sunday, I made the commitment NOT to experiment with foods that are not on my renal diet.  And, since I know these are family heavy holidays, I took time off periodically to sit down and read a book for more than ten minutes at a time so I was at least rested.

While I was the one who invited nine people for Easter dinner (less than a week before our wedding, no less), Bear popped right in and took the stress off me.  He did the meal planning and the shopping.  I just asked each of our guests to make their specialties: Kelly made her creamy mashed potatoes, Lara her grandmother’s recipe cheesecake, Abby the crescent rolls, Sean’s mom Mary Ann the string bean casserole.  Alex brought wine and on and on. easter-dinner

It was pretty clear I needed something I could eat, so Bear brought me turkey, salad, bananas and strawberries.  I didn’t even miss tasting the ham, sweet potatoes, macaroni and cheese or some of the home made food.

I have a confession: I always get the adult children (the youngest is 28 for heaven’s sake!) Peeps and since the adults were disappointed they didn’t get any last year, I got them some this year, too. I know, I know, it’s all sugar and food coloring.

Sometimes, I get glutted by just being with my family.  Maybe that’s why while I might ‘taste’ the foods forbidden to me, I don’t seem to want to eat bunches of them.  Whoa, were the Beatles right when they sang, “All you need is love?”

A nice spring holiday present for me: the book continues to do well in the foreign market.  Let’s see what we can do about moving here at home too.

passoverI hope your Easter and Passover were (and still is in the case of Passover) happy, healthy, and rejuvenating.

Until next week,

Keep living your life!

In the Interests of Being Fair….

Previously in this blog, I’d written about the unimagineable cuts made to Arizona’s Medicaid program by Arizona’s governor, Jan Brewer.  I’m no fan of hers, BUT I do believe in being fair.  Therefore, I’m posting this article from today’s The Arizona Republic:April 26, 2011 |

 

Brewer works to restore transplant coverage

by Ginger Rough – Mar. 28, 2011 12:16 PM
The Arizona Republic

 
 

 

Gov. Jan Brewer’s office is open to restoring medical transplant coverage for low-income patients, possibly as part of her effort to overhaul the state’s Medicaid program.

Brewer first hinted at the possibility during a trip to Prescott Valley last week.

“There is a possibility that that issue can be addressed,” Brewer told The Republic. “I would hope that there could be a solution, an agreeable solution. That doesn’t mean that’s going to happen, but we’re working to find a solution.”

But it’s not clear what kind of support there is for the plan among legislators.

Any plan to restore funding would require Legislative approval, Brewer spokesman Matthew Benson said.

Funding for transplants was not included in the $8.1 billion budget proposal approved by the Arizona Senate earlier this month, but the House has yet to take up the issue and it is generally believed it wants to have an agreement with the Governor’s Office before beginning its deliberations.

The transplant money was cut last spring when state lawmakers approved a fiscal 2011 budget that cut funding for optional services provided by the Arizona Health Care Cost Containment System, the state’s Medicaid program.

Those cuts, designed to help close a massive budget gap, included coverage of certain transplant surgeries, including bone marrow, kidney, liver problems due to hepatitis C and others. Eliminating the transplant funding saved the state about $1.2 million.

The cuts took effect Oct. 1, and drew unflattering national media attention after Goodyear father Mark Price, a leukemia patient was denied coverage for a bone-marrow transplant. An anonymous donor came forward to pay for the procedure, but Price died Nov. 28 of complications to his disease.

National media reports referenced Arizona and its “death panels.”

Democratic lawmakers have kept the issue at the forefront this Legislative session, but proposals to reinstate funding have gained little traction.

If Brewer’s office can successfully negotiate a deal to reinstate transplant funding, it would mark a stunning reversal of position on the issue. She has repeatedly said there is no money for such procedures given the state’s ongoing budget crisis.

The governor’s Medicaid waiver request is due to be submitted to the Health and Human Service Secretary Kathleen Sebelius this week. Brewer’s $500 million proposal would eliminate fewer people from the state’s Medicaid rolls by freezing enrollment, requiring patients who remain to pay more for their care and reducing the amount paid to health-care providers.

Monica Coury, an assistant director for AHCCCS, said she could shed little light about the possibility of reinstating transplant funding as part of the Medicaid waiver request, saying that “would have to be the governor’s decision.”

Coury said her office is currently working on the Medicaid waiver proposal and “it doesn’t have transplants in it.”

Reach the reporter at ginger.rough@arizonarepublic.com

Am I assured the transplant money will be restored?  No, not yet.  Am I hopeful?  In a word: very.  I’m hoping I’m not once again being a Pollyanna, but I’m also hoping that I’m not the only one concerned about this issue.  Think about it.  What can you do to help restore this money to Arizona’s economically challenged people?  Unfortunately, if the unthinkable can happen here, who’s to say it can’t happen in your state, too?
 
Until Friday,
Keep living your life (and finding ways for other to continue to live theirs)
   
Published in: on April 26, 2011 at 3:01 pm  Comments (4)