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!

The Other Side of the Coin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

How Did It Get Political?

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

February is Black History Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

I’m Wearing Out

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

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

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

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

…advantages:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_2980

Until next week,

Keep living your life!

What Are You Doing for Others?

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

mlk-do-for-others

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Where Does It All Come From?

KwanzaaFor the past two weeks, I’ve had the flu. I’ve missed the Chanukah Gathering at my own house, Kwanzaa, and New Year’s. I even missed my neighbor’s husband/son birthday party and a seminar I enjoy attending.

Before you ask, yes I did have a flu shot. However, Strain A seems to be somewhat resistant to that. True, I have been able to cut down on the severity of the flu by taking the shot, but it leaves me with a burning question: How can anyone produce as much mucus as I have in the last two weeks?

Mucus. Snot. Sputum. Secretion. Phlegm. Whatever you call it, what is it and how is it produced? According to The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/mucus, it’s “the free slime of the mucous membranes, composed of secretion of the glands, various salts, desquamated cells, and leukocytes.” By the way, spelling it mucous makes it an adjective, a word that describes a noun. Mucus is the noun, the thing itself.

Let’s go back to that definition for a minute. We know from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease that “Leukocytes are FullSizeRender (2)one of the white blood cells that fight bacterial infection.” Interesting, the flu as bacterial infection.

Yep, I looked it up and found this on WebMd at http://www.webmd.com/cold-and-flu/tc/flu-signs-of-bacterial-infection-topic-overview: “A bacterial infection may develop following infection with viral influenza.” Oh, so that’s what all the mucus is about. There’s quite a bit more information on this site, but I’m having a hard enough time sticking to my topic as it is.

I still wanted to know how mucus (without the ‘o’) was produced.

Many thanks to Virtual Medical Centre at http://www.myvmc.com/medical-centres/lungs-breathing/anatomy-and-physiology-of-the-nasal-cavity-inner-nose-and-mucosa/ for their help in explaining the following:

The nasal cavity refers to the interior of the nose, or the structure which opens exteriorly at the nostrils. It is the entry point for inspired air and the first of a series of structures which form the respiratory system. The cavity is entirely lined by the nasal mucosa, one of the anatomical structures (others include skin, body anim_nasal_cavityencasements like the skull and non-nasal mucosa such as those of the vagina and bowel) which form the physical barriers of the body’s immune system. These barriers provide mechanical protection from the invasion of infectious and allergenic pathogens.

By now you’re probably questioning what this has to do with Chronic Kidney Disease. I found this on a site with the unlikely name Straightdope at http://www.straightdope.com/columns/read/1246/how-does-my-nose-produce-so-much-snot-so-fast-when-i-have-a-cold :

“The reason you have a seemingly inexhaustible supply of mucus when suffering from a cold is that the mucus-producing cells lining your nasal cavity extract the stuff mostly from your blood, of which needless to say you have a vast supply. The blood transports the raw materials (largely water) from other parts of the body. Fluid from your blood diffuses through the capillary walls and into the cells and moments later winds up in your handkerchief. (This process isn’t unique to mucus; blood is the highway for most of your bodily fluids.)”

While this is not the most scholarly site I’ve quoted, it offers a simple explanation. Blood. Think about that. I turned to The Book of Blogs: Moderate Stage IMG_2982Chronic Kidney Disease, Part 1 for help with my explanation.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.  I haven’t even mentioned their minor ones.”

Get it? Kidneys filter the blood. Our kidneys are not doing such a great job of filtering our blood since we have CKD, which means we also have compromised immune systems. Thank you for that little gift, CKD. (She wrote sarcastically.)

Now you have the flu. Now what? Here are some hints taken from Dr. Leslie Spry’s  ‘Flu Season and Your Kidneys’  reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. Dr. Spry is an active member of the Public Policy Committee at the National Kidney Foundation, and, I am honored to FullSizeRender (3)say, a follower on Twitter.

You should get plenty of rest and avoid other individuals who are ill, in order to limit the spread of the disease. If you are ill, stay home and rest. You should drink plenty of fluids …to stay well hydrated. You should eat a balanced diet. If you have gastrointestinal illness including nausea, vomiting or diarrhea, you should contact your physician. Immodium® is generally safe to take to control diarrhea. If you become constipated, medications that contain polyethylene glycol, such as Miralax® and Glycolax® are safe to take. You should avoid laxatives that contain magnesium and phosphates. Gastrointestinal illness can lead to dehydration or may keep you from taking your proper medication. If you are on a diuretic, it may not be a good idea to keep taking that diuretic if you are unable to keep liquids down or if you are experiencing diarrhea. You should monitor your temperature and blood pressure carefully and report concerns to your physician. Any medication you take should be reported to your physician…

National Kidney MonthCheck the National Kidney Foundation itself for even more advice in addition to some suggestions as to how to avoid the flu in the first place.

Every year I decide not to write about the flu again. Every year I do. I think I’m oh-so-careful about my health, yet I end up with the flu every year. Sometimes I wonder if these blogs are for you…or reminders for me. Either way, I’m hoping you’re able to avoid the flu and keep yourself healthy. That would be another kind of miracle, wouldn’t it?IMG_2980

Until next week,

Keep living your life.

Starting the New Year with a Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Medical Individuals

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

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

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

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

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

cjasn

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Teachers Teach

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

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

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

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

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

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

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

By now, even her heart is probably kidney shaped.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living YOUR life!

Rain, Rain, Go Away…

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

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

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

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

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

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

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

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates.  The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body. Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.”sun-graphic1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Why Not Here?

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

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

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

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

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

What is it

 

SlowItDownCKD 2015 Book Cover (76x113)

 

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

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

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

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

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

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

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

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

About NKF Peers

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

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

NKF-logo_Hori_OB

 

 

How do participants interact with each other?

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

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

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

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

Until next week,

Keep living your life!

Renal Sally Port

Sometimes things just pop into a writer’s head for no reason at all. The title of this week’s blog did that over and over again. Okay, I thought, I’ll go with it.  Only one problem: I didn’t know what a sally port was and why I should be writing about a renal one.

BearandmeHmmmm, I did marry a military man. I asked. He explained but I wanted to see it in writing. Hence, this definition from The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/sally%20port:

1:  a gate or passage in a fortified place for use by troops making a sortieSally port

2:  a secure entryway (as at a prison) that consists of a series of doors or gates

Oh, now I got it. I immediately thought of Fort Wadsworth on Staten Island where I took my little children to Civil War reenactments. There were scary, dank areas between the port and the base which were enclosed between large old gates at either end. No sun got in and it echoed in there. It was a place of fascination and fear for my little ones. What did that have to do with our kidneys?

Then I thought of having visited the friend I’d written about in the hospital when his bipolar medications needed immediate adjustment. One door was unlocked for me, I entered. That door was relocked behind me and another unlocked in front of me. That was a sally port, too.

Our gaggle of grown children has told us enough about ‘Orange is the New Black’ that our interest was piqued. Then Bear read my Hunter College Dascha PolancoAlumni News Letter and saw that Dascha Polanco – a major character in the series – also graduated from Hunter, although not exactly the same year I did. Those seemed like good enough reasons to give the series a try. It was set in a prison with a series of sally ports to enter or exit.

Now it was more than clear. A sally port is a security feature to guard entry and exit. Good, one half of the renal sally port secret revealed. Now, do our kidneys have sally ports?

This is the structure of your kidney. It’s clear there are three ways in or out of the kidney: the veins, the arteries, and the ureters. Let’s take a look at each to see which, if any, is a sally port.  Blood Oxygen Cycle Picture 400dpi jpg

In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, it was explained that the renal (kidney) artery brings the unfiltered blood into the kidney:

What is it“Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries.  This is where the blood from the renal artery is filtered.  The glomerulus is connected to a renal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.”

Well, what about the renal vein? Here’s how I explained it in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“If you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited Part 2from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.”

Well, if the renal artery is the sally port for the blood entering your kidneys, the renal vein sounds like the more important renal sally port since it’s allowing that poorly filtered blood back into your blood stream.

Oh wait, we forgot the ureter.   There’s an explanation from the presently-being-published SlowItDownCKD 2015 about that.

Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following.

SlowItDownCKD 2015 Book cover“A hollow organ in the lower abdomen that stores urine. The kidneys filter waste from the blood and produce urine, which enters the bladder through two tubes, called ureters. Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, passing through the prostate gland and then the penis. Also known as urinary bladder and vesical.”

Uh, no, there’s nothing in that description that indicates the urethra is a sally port.

So… the renal vein then.  How does this poor excuse for allowing filtered blood back into our blood stream affect us? (I do admit that it seems it’s more the fault of the damaged glomeruli than the renal vein acting as a sally port.)

For one thing, we become one of the one-in-three at risk for Chronic Kidney Disease … and that’s only in America. For another, our bodily functions differently as do our minds. I included this not-so-pleasing information from EurekAlert! in a 2012 post in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

Decreased kidney function leads to decreased cognitive functioning

“Decreased kidney function is associated with decreased cognitive functioning in areas such as global cognitive ability, abstract reasoning and DIGITAL_BOOK_THUMBNAILverbal memory, according to a study led by Temple University. This is the first study describing change in multiple domains of cognitive functioning in order to determine which specific abilities are most affected in individuals with impaired renal function.”

But there’s more. According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/factsheets/FastFacts, this is what is our kidneys are NOT doing for us as well as they should since we have CKD:

  • Regulate the body’s fluid levels
  • Filter wastes and toxins from the blood
  • National Kidney MonthRelease a hormone that regulates blood pressure
  • Activate Vitamin D to maintain healthy bones
  • Release the hormone that directs production of red blood cells
  • Keep blood minerals in balance (sodium, phosphorus, potassium)

I’m glad I got the term renal sally port out of my system, but I wish the news had been better.

Until next week,

Keep living your life!

Sex Sells… Well, It Keeps Us Interested Anyway

National Kidney MonthHappy Monday, blog writing day, my favorite day of the week.  You know, this is the third week of National Kidney Month which brings quite a bit of kidney disease awareness activity with it. For example, this past Friday and Saturday, The National Kidney Foundation of Arizona held its 17th annual conference in partnership with The CadioRenal Society of America.

I attended on Friday, renal day, since Saturday – cardio day – was a bit too over my head. I had the good luck to run right into Dr. James Ivie, Director of Patient Services, as soon as I entered the building. After I apologized for not having a book for him this year (SlowItDowCKD 2015 is available in digital, but the print version won’t be ready until later on this month.), he told me how very successful the conference was this year, easily surpassing the number of attendees from the year before.

He was so right. I could see for myself that the place was crowded and people were talking. More than one vendor was more interested in my CKD writing than in selling me their product. I was surprised, but delighted. Then I started attending the sessions and found the same with other attendees and, again, was delighted.Kidney Arizona

But what delighted me most was how much I understood.  You see, the more I understood, the more I could bring back to you. As usual, presenter styles varied from the one who simply read the statistics on her slideshow graphs for us to the one who told anecdotes, asked for audience participation, and had us both laughing and highly interested.

Her topic?  Enhancing Intimacy and Sexuality. Her name? Robin Siegel. She is a licensed clinical social worker. Learn.org at http://learn.org/articles/What_Does_LCSW_Stand_For.html tells us “An LCSW, or licensed clinical social worker, is a professional who provides counseling and psychosocial services to clients in clinical settings.”

Ms. Siegel was actually presenting about how nephrology staff can be helpful in these areas, but quite a bit of her information was also useful for Chronic Kidney Disease patients themselves… or those that write about CKD.

Hmmm, her ideas sounded familiar to me. Sure enough, it seems I had been thinking along the same lines when I wrote the following in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

Book Cover“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…..

The usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. …

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.”

Ms. Siegel added to this by talking about possible medical intervention traumas, cultural values, and gender issues. What Is It and How Did I Get It? Early Stage Chronic Kidney Disease was written in 2010, although it was published in 2011. Transgender was hardly, if ever, mentioned in the news – medical or otherwise. It was almost the same for homosexuality. It’s a different world in 2016. We talk openly about sexuality. Well, let’s say many of us do. I really liked the way this presenter made it clear that these are simply part of some patients’ lives and must be treated respectfully, especially when dealing specifically with their sexuality.IMG_2867

We agreed about intimacy, too. More from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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….  The best advice I received in this area was make love even if you don’t want to.  Magic.”

Those last thoughts are purely mine, but Ms. Siegel did talk about the snuggling and hugging from a patient point of view: allowing, giving, getting.

Something else she introduced was the different cultural values in our present day society. That’s another thing that wasn’t as publicly prevalent as it is today. For example, certain cultures will not permit a male doctor if the patient is female. If you belong to one of these cultures, you can simply ask for a female nephrologist in the practice or for a referral to another practice with female nephrologists if yours doesn’t have any. (What???  In this day and age!!!!) According to one of my Muslim friends, there is a list of female doctors, including specialists, available in her community.

Other cultures will not allow eye contact. This is important for you to let your nephrologist know about so that he or she will not think you are avoiding topics if this is part of your culture. Sometimes written material such as handouts and pamphlets can allow you access to the same information you would have been told, too.

It seemed to me that Robin Siegel was making clear that there is no problem that can’t be attended to by your nephrologist or his/her staff – even sex and intimacy – with just a bit of adapting to whatever the patient’s (Oh, that means you and me.) sexuality and culture.

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I have been receiving all kinds of laudatory comments about The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since SlowItDownCKD 2015 was published in digital last week. I like how that works: publish a new book and there’s renewed interest in your others. Feel free to write reviews on any and all of my four CKD books.

Until next week,

Keep living your life!

It’s National Kidney Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March is National Kidney Month

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

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

Until next week,

Keep living your life.

Are you kidding????? Again??????

MenorahGuess what I have.  No, it’s not a Chanukah gift from Bear (although I’ve already gotten one of those). Hang on, I’ll give you a hint: I got it even though I took my annual flu shot.

Yep, this is yet another year I’ve come down with the flu despite having been vaccinated.  I realize that the vaccine only covers the anticipated strains of the flu for a particular season, but how is it I manage to get that strain… the unanticipated one… so often?

This week is the beginning of Chanukah. For those of you who celebrate, I wish you the joyous glow of the season all year round. But wait, it’s also National Influenza Vaccination Week.

According to the U.S. government’s Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm,the shot

“National Influenza Vaccination Week (NIVW) is a national observance that was established to highlight the importance of continuing influenza vaccination…. The timing of flu is very unpredictable and can vary in different parts of the country and from season to season. Most seasonal flu activity typically occurs between October and May. Flu activity most commonly peaks in the United States between December and February.”

We’re deep into it now. Well, then, why do I need to keep taking this vaccine that seems to be the wrong one for me each year?

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

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

This tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc. was even more direct.

  • Cardiovascular disease is the leading cause of death among patients with CKD
  •  Infectious diseases are the second most common cause of death among cause of death among patients with CKD

fit the fluIt’s here now. So what do I do about it? I was truly surprised at the OTC (over the counter) medications my former nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken ten Tylenol in the last eight years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  (Not the one with the ‘d’ on the label; that could raise your blood pressure.) Then there was the Benedryl that came with a caution not to take it until I was going to sleep. It would knock me out. Oh, and the Mucinex.

The one recommendation I got a kick from was hot tea with lemon and honey (I actually asked him if he knew my mother, but I don’t think he heard me.) laced with whiskey. This for someone who doesn’t drink?

It occurred to me (I do forget this and need to remind myself repeatedly) that when the media refers to the elderly in their public service announcements about the flu, they mean people over 65.  That means me.  I had not been paying attention to any health warnings for the elderly because they didn’t apply to me, or so I thought.  Hah!  Reality smacks me in the face again.

Let’s say you’re one of the lucky ones who has not yet gotten the flu and want to keep it that way. According to Healthfinder.gov, Office of Disease Prevention and Health Promotion, you can protect yourself by doing the following, in addition – of course – to being vaccinated:the flu ends with you

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

Note: There is a technical error on their page right now, so you won’t be able to click through.

Knowing me, you’ve probably figured out I just couldn’t watch movies and read while I was sick. Nope, I needed to work. So I did. The print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 now has an index. This new, improved version (Sorry, no crackerjack prize in the box. Uhhhh, you won’t get that joke unless you’re a bit older.) should be available on both Amazon.com and www.BarnesandNoble.com this week.

That is in plenty of time for Chanukah. Remember, there are eight days that the holiday is celebrated. And I’m working on the index for print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, so it will be available before Christmas.

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I like giving you gifts. If you already bought the print copy without the index, email me at SlowItDownCKD@gmail.com and I’ll be very happy to send you the index.

And let’s not forget about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Consider that an easy introduction for the newly diagnosed and their friends and family.

Book CoverI think I feel another The Book of Blogs: Moderate Stage Chronic Kidney Disease book coming on. Eeeek! Let’s wait until after the New Year to deal with a title for that one.

I wanted to remind you to use the search function if you have the digital version of any of the books. If you need a little reminder or tutorial as to how to use that, email me. I’ll be glad to help.

This year is flying by. The months flew by. Even today flew by.  Is it that I’m older and everything takes longer?  Or is it that I’ve learned to make the most of the hours in the day…month…years. Whatever it is, thank you for letting me share some of your time each Monday.

Until next week,

Keep living your life.

Last One

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

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

What is it

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

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

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

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

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

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

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

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

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

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

We do. We have Chronic Kidney Disease.

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

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

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

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

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

Talking about that:

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

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

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

They provide free blood and urine testing, which is evaluated on site using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

Until next week,

Keep living your life!

Well, What About Mexico?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’d better get back to those indexes.

Until next week,Book Cover

Keep living your life!

It’s the Funniest Thing…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

We Are Not Alone, Unfortunately

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

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

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

ckd

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

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

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

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

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

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

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

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

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

stages of CKD

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

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

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

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

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

HOW MANY PEOPLE HAVE CKD?

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

Unhealthy%20KidneyWHO IS AT INCREASED RISK OF CKD?

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

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

IMG_1398

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

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

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

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

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

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

Until next week,

Keep living your life!

I Saw It!

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

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

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

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

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

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

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

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

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

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

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

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

I was watching the extra water move from my kidneys to my bladder!  I was probably watching the blood being filtered in the kidneys, too, but that was not as clear to me.

Well, what do you know?  It seems the National Kidney Foundation is running a campaign to make the public aware of that, too.  This is what the foundation has to say about the campaign.

The National Kidney Foundation (NKF) has launched a cheeky campaign to promote kidney health and motivate people to get their urine screened.

EverybodyPees is an irreverent, educational animated music video plus a website (www.everybodypees.org) that focuses on the places people pee. EverybodyPees_PostersV3_Page_5The number one goal of the campaign is to link one of the kidneys’ primary functions — the production of urine — to overall kidney health. Pee is important because urine testing can reveal the earliest signs of kidney damage.

“Our research has shown that half of Americans don’t understand that healthy kidneys are responsible for creating urine,” said Kevin Longino, interim CEO of the National Kidney Foundation. “Urine also happens to hold the key to catching kidney disease, especially among the 73 million Americans who are at risk. The message may be unconventional, but it is educational and actionable – get your urine checked for kidney health.”

Kidney disease is at an alarming proportion in the United States. Over 26 million American adults have kidney disease and most don’t know it.  More than 40% of people who go into kidney failure each year fail to see a nephrologist before starting dialysis — a key indicator that kidney disease isn’t being identified in its earliest stages.Healthy%20Kidney

“People aren’t getting the message that they can easily identify kidney disease through inexpensive, simple tests,” said Jeffrey Berns, MD, President of the National Kidney Foundation. “Keeping kidneys top-of-mind in the restroom will hopefully remind people that they should be asking about their kidneys when they visit their healthcare professional, especially if they have diabetes, high blood pressure, a family history of kidney failure, or are over age 60.”

NKF-logo_Hori_OBEverybodyPees is NKF’s first attempt to tackle a serious national health problem from a relatable, consumer angle. The campaign was produced in collaboration with Publicis LifeBrands Medicus.

“We are flipping public health education messaging on its head –using humor to get our message across and foregoing scare tactic messaging” Longino said. “We’re going out on a limb with our core message on urine testing, but we need to take risks if we’re going to alter the course of kidney disease in this country.”

Being who I am, I prefer ‘urine’ to ‘pee,’ but that wouldn’t be half as catchy, would it?

Consider The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 as bathroom reading while you’re urinating – uh, peeing – so we can get some more reviews. And always, let us know about any new CKD books you discover.

Until next week,Part 2Digital Cover Part 1

Keep living your life!

 

Going Mental

Ilana Contest Winner!  Congratulations to Ilana Lydia for winning the photo contest for the Weirdest Place to read one of my CKD books.  She took a little poetic license and had her cat read the digital version on her computer.  I never would have thought of that… or my Bear’s reading one of the books while welding or Abby’s reading one while walking the tightrope and twirling a hoola hoop.  (They were disqualified because they’re immediate family.)

Thanks for all the entries, you creative readers, you. Ilana, please contact me privately so I can send you a brand new, personally inscribed copy of The Book of Blogs: Moderate Chronic Kidney Disease, Part 1.  If any of you have a contest idea you’d like to have me run, just let me know.  This contest idea was from avid reader, Geo DeAngelo.  Thanks again, Geo.DIGITAL_BOOK_THUMBNAIL

Aha, looks like there’s a free Path to Wellness health screening coming up. This one is in Mesa, Arizona, at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30. That’s a Saturday. There are two requisites here: you must be over 18 and have a nuclear family member with diabetes, heart disease, or kidney disease OR a history of diabetes or high blood pressure yourself.

Path to Wellness screenings include the screening itself, immediate blood and urine results, doctor consult, onsite health education, 6 week Healthy Living Workshops, and help finding a family doctor.  Just call the National Kidney Foundation of Arizona for an appointment at 602 840 1644 for English speakers or 602 845 7905 for those who would prefer Spanish.NKF-logo_Hori_OB

Have I mentioned enough times that this screening is free?  Early diagnose is important so you can slow down the progression of the disease. You can’t be treated for the disease if you don’t know you have it.  Now you’ve just lost the ‘I don’t have the money for that’ excuse.  Be good to yourself and get screened.

Now, about that blog title.  You know when you have a preconceived notion that you seem to make things come out that way?  Okay, we all go for periodic blood tests.  The procedure is called venipuncture which simply means puncturing the vein. Since I’m on a cholesterol medication, it’s once every three months for me.  I went for the blood draw on Friday.

There are two phlebotomists at the Lab Corp attached to my PCP’s practice.  One is so heavy handed that it hurts and I have discreetly requested that 1. She not draw my blood and 2. She be told why I made that request.  It turns out this was not news to her, yet she continues to work there. She was not the problem this time.Abby book

The other phlebotomist has the touch of a butterfly and a great deal of personality to boot.  I know if she draws my blood, it’s not going to hurt. My veins are also becoming ‘difficult’ after all these years of blood tests.  They roll, collapse, or seemingly disappear. I just realized these problems are all associated with elderly patients.  Hey, I’m not there yet! Truthfully, some of these problems may have to do with the placement and depth of the needle. If you’re interested, there’s a fairly easy to understand ARO Onsite Training and Consulting (for phlebotomists) site at blood drawhttp://arotraining.com/images/Documents/Venipuncture%20Module%206_Venipuncture%20Complications%20and%20Special%20Circumstances.pdf

Finally, we get to the mental part.  While I knew the preferred phlebotomist wasn’t going to make me hurt – other than the initial pinch – it did hurt. I just didn’t experience the sensation that way. I have a close to the surface vein in my upper left arm and, after palpating but not finding a really good vein in the crooks of either of my elbows or the back of my hands, she decided to use that one… with my blessing.  I’d been wondering why no one ever tried that vein before. Note the size of the bruise this resulted in:IMG_1220

It worked for 1 ½ of the 3 tubes that were needed, then it collapsed.  She knew I’d have a whopping bruise, but I still didn’t feel the pain I should have been feeling according to my past experience of venipuncture and hers.  Why?

Ah, the brain is a marvelous thing. According to About Health at http://pain.about.com/od/whatischronicpain/a/feeling_pain.htm

Special pain receptors called nociceptors activate whenever there has been an injury, or even a potential injury, such as breaking the skin or Bear and bookcausing a large indentation.

Venipuncture, although it is to help keep you healthy, is an injury to the skin and vein.  So have I somehow been manipulating my nociceptors? No, I don’t think so.

There are many sites on the internet that explain how you can use visualization, transference, mental imagery, meditation, and other such techniques to lessen chronic pain. That’s not what I was dealing with. I knew, absolutely knew, I wasn’t going to experience any pain. I usually do some deep breathing, do not look at the site being punctured (wrote a whole blog about that a few years ago), and cracked jokes with the young lady performing the procedure.

In other words, there was no anxiety, no fear, no foreboding, just a simple case of I-have-to-do-this-therefore-I-will-and- I-will-experience-the-pain-as-mildly-annoying. I know. I know. I wish I could do this at the dentist’s office, too.

brainI had expected to offer you loads of scientific information about this from alternative medicine sites, but they all seem to say the same thing I just did.  Over 40 years ago, I was involved with Seagull Mind Training. That was a company (now defunct) that claimed to teach you how to use more of your brain power. I say we are using more, all of us, with the quest into mind/body connection, alternative and complementary medicine, and an overall awareness of our general good health. The difference is that we now accept this as commonplace.

While this is not something I would try with major surgery, you might be surprised at how well it works during your next blood draw.

Poor books seem to get ignored until the very end of my posts lately.  I urge you to share, people, share. If you’ve bought the Kindle version, there is a share program available. You can also ask your library to order copies.

Until next week,

Keep living your life!Digital Cover Part 2 redone - CopyWhat is it

Sailing, Naturally

Wow!  I just spent the past three days at a Landmark Wisdom Unlimited course and discovered that my already terrific life is even more than terrific than I thought. The theme was loosely, “What do you like about your life?” I was one of those that just kept going and growing my list again and again. Sharing Chronic Kidney Disease awareness was high on that list.

Talking about sharing, I casually mentioned to my daughter Nima – researcher par excellence – that I was looking for information about natural Nimapreventatives and/or cures for sea sickness.  Most of today’s research came from her immediately jumping on my comment.  Then I casually mentioned to her that she might consider a job as a writer’s research assistant.  She’s a talented person in many areas (I guarantee you this is not just mother pride), and this is one of them.

Bear and I are still about six weeks out from my very first cruise.  I’ve managed all the business, such as the tickets, the land excursions, the hotels for before and after, etc. What I’m still working on is the cautions about motion sickness made by my sister-in-law – Judy Peck. Last week I wrote about over the counter medical solutions and their relationship to CKD.  This week, we go the natural path.IMG_0959 (1)

That said (written), I must caution you in my turn.  Natural aids have neither been tested nor approved by the Federal Drug Administration.  Even if you’re not in favor of the FDA, remember that dosages and timing of natural aids have not been tested either.  Also, see page 87 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

In other words, if anything in today’s blog catches your interest, please check with your nephrologist before you even think of taking whatever the product is.  I am not a doctor, have never claimed to be one, and want you to understand that you and your nephrologist are the final arbitrators of what is safe for your kidneys and what is not.

Ready?  Here we go. First off, we have WebMD at http://www.webmd.com/a-to-z-guides/acupressure-bands-for-motion-sickness-topic-overview. This is the one that caught my eye right away.

These bands use pressure, electricity, or both to stimulate the P6 acupuncture point. This point is located about two finger-widths from the crease on the underside of the wrist. The elastic bands usually have a raised surface that applies pressure on the wrist. Practitioners of acupuncture and acupressure believe stimulation of this point may stop nausea and vomiting.Adult Pack

Reminder: this is not an endorsement of this particular brand, simply a representation of what the band looks like and how it’s used.

Neither side effects nor effectiveness have been proven, so I’m wondering how I can test this before we cruise.  In New York, I would have jumped on the Staten Island ferry.  Wait, I never got seasick on the ferry, so that wouldn’t work.  Hmmm, I didn’t get seasick on the cruises around Manhattan Island either.

Maybe I’m one of those people who just doesn’t get seasick. But just in case you are, I’ll write about what else Nima found for us.

Many thanks to both my daughter for finding this and the HerbalShop.com at http://herbalshop.com/Acupressure/Acupressure_12.html for these

charts showing the acupressure points that can help.

Again, I don’t see how this can harm the kidneys, but I do urge you to talk with your nephrologist beforehand.  I found an equal number of articles in favor of and opposed to acupressure in the treatment of CKD, but none about using it for seasickness if you have CKD.  Interesting.

Now I’m wondering if this is my favorite natural seasickness aid. Of course, you can use a mixture of methods.  By the way, you don’t need to massage all these pressure points.  One or two may do the trick.

Nima also found an interesting (I think) article on yoga for seasickness on The Art of Living site at http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-motion-sickness. However, I have to admit my ignorance.  I understood very little of it since it mentioned positions a non-yogi – like me – would have to research and probably, more realistically, learn from a teacher – say as in a class.

The article didn’t mention CKD so I attempted to research yoga + chronic kidney disease + seasickness.  That didn’t work, so I kept rearranging the order of the search terms and still got no hits. I don’t see how yoga can hurt, other than sprains and strains if it’s all new to you, but I hesitate to say this is okay when I’m not your nephrologist.

Then there was this on Ask Dr. Mao at http://www.askdrmao.com/questions-and-answers/ginger-for-nausea/

Ginger has been used as food and medicine for millennia. Ginger’s modern use dates back to the early 1980s, when a scientist named D. Mowrey noticed that ginger-filled capsules reduced his nausea during an episode of flu. Subsequent research ultimately led to approve ginger being used as a treatment for indigestion and motion sickness.

Cup of Tea in MorningGinger is typically not as effective as standard drugs for motion sickness, but it has the advantage of not causing drowsiness. Some physicians recommend ginger over other motion sickness drugs for older individuals who are unusually sensitive to drowsiness or loss of balance.

However, the National Kidney Foundation does caution that ginger could interfere with your prescription medication.  While not specially aimed at the CKD population, this is the first I noticed any mention of “motion sickness drugs” and “loss of balance” in the same sentence. Odd that a medication aimed at relieving such symptoms can actually be a cause of one.

I have no intention of becoming seasick on our two cruises (the second in the Caribbean in September to celebrate said sister-in-law’s birthday and the 48th anniversary she will be sharing with my brother, Paul), but you know I’ll be bringing the acupressure chart and one of the seasickness bands with me… should my nephrologist concur.

Book Cover

I have a favor to ask: if you have read either of The Book of Blogs: Moderate Stage Chronic Kidney Disease, please write a review onDigital Cover Part 1 Amazon.com.  This is what one reader had to say in his review,

If you have kidney disease, like I do, you can relate to what Gail Rae-Garwood has written here… very useful…

Until next week,Part 2

Keep living your life!

But What Does That Mean?

11164740_10206320086664607_5860553690846776933_oI have to start off with gratitude to Team SlowItDownCKD for their willing participation in yesterday’s National Kidney Foundation of Arizona Kidney Walk. Abby Wegerski, Lara Garwood (and their ‘others’), Keith Harris, Patti DuBois, and Amy Vlasity with her children – Olivia, Willie, and Adam – all showed up bright and early.  I was so busy passing out book cards, speaking to others, and enjoying the dancing my team did that I neglected to notice which radio and TV stations were there.  Let me know if you can help out here.

Funny anecdote: when I presented Dr. Ivie of NKF of Az. with a copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, he looked at it quizzically and said something to the effect that it looked thicker than the other one I’d given him.  He was actually referring to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Thank you, Dr. Ivie, for proving to me that I got the cover just right for everyone to know this is a series.Book Cover

I’m glad to report there are loads of questions about last week’s blog.  These are questions I was going to answer when I got the results, hopefully for next week’s blog.  However, I’ll happily yield to public demand.

To refresh your memory, the test in question is NutrEval (FMV Amino Acids) with Nutrient & Toxic Elements. Below is a scan of the orders.  Lots of different elements being tested here.  I could think of several ways to explain them, but turned to the CPT codes as what seemed to be the easiest way of doing so.

Notice there are CPT codes to the right of the profile components.  CPT means ‘Current Procedural Terminology” according to The American Medical Association (AMA) at http://www.ama-assn.org/ama/pub/physician-resources/solutions-managing-your-practice/coding-billing-insurance/cpt.page

I attempted to use the AMA code manager at https://ocm.ama-assn.org/OCM/CPTRelativeValueSearch.do?submitbutton=accept  where you can enter any CPT code. No go, it turned out the site required registration and payment. I also wonder if this is not a billing site.

Back to figuring this out.  Next I did a simple Google search. I did come up with a few sites, but they all seemed to be for billing purposes. Well, maybe I shouldn’t be using those codes.  Maybe they were codes used solely for billing.

Oh! Mental head slap!  That’s exactly why CPT coding was developed and what it’s used for. (Do you think I can get away with saying I’m still tired from yesterday’s walk as my excuse for not catching that immediately?)

IMG_0070Think!  What else could I do? I could do a simple search for the name of the test, couldn’t I?  I decided to find out. I looked for the most esoteric name I could find and settled upon 8-OHdG.  Anyone ever hear of it?  Me, neither. But Farley’s Free Medical Dictionary has.  This is at http://medical-dictionary.thefreedictionary.com/8-OHdG 8-OHdG 8-hydroxy-2’-deoxyguanosine.

A modified DNA nucleoside product generated by reactive oxygen species (ROS), which is elevated in colorectal carcinoma, but not in adenomas. 8-OHdG is also elevated in ulcerative colitis (UC) and increases with disease duration and dysplasia. MUTYH, the human mutY homologue, is responsible for excising misincorporated adenine and for suppressing mutations caused by ROS. Nuclear expression of MUTYH is attenuated in UC.

We have a choice here: wait for the nutrition counselor prescribing the test to explain this in detail IF the value is unacceptable upon testing or define each unknown separately.  I’m willing to wait until the test results are in.  Do tell me if you’re not and we’ll explore these terms together.

Maybe we’ll have more luck with another term.  Which one, though?  Ummmm, okay, let’s take a look at Pyruvic Acid. The same dictionary tell us this is

CH3COCOOH, an intermediate in carbohydrate, lipid, and protein metabolism.

Now we could look up CH3COCOOH but what good would it do?  We have what we need. We know carbohydrates, lipids (fats), and protein have to be metabolized in order to be of any use to us.  This acid helps to do that.  We can understand how a lack of or surplus of this could affect us. I’d pay special attention to this component since it’s the metabolism of these components that give us energy… or in my case, seemingly not enough energy.

Let’s try another one.  How about Behenic Acid this time?  I found this definition at Dictionary.com (http://dictionary.reference.com/browse/behenic+acid?s=ts).

a crystalline, saturated fatty acid, C 22 H 44 O 2, obtained from plant sources, used chiefly in the manufacture of cosmetics, waxes, and plasticizers.

Frankly, the definition left me scratching my head and wondering why I would be tested for that.  Wait! I’ve got it, but it’s supposition. Maybe too coxemeticsmuch of that seeping into my system would cause a problem.  Clogging?  If so, clogging what?

Drugs.com at http://www.drugs.com/dict/behenic-acid.html told me it’s

A constituent of most fats and fish oils; large amounts are found in jamba, mustard seed, rapeseed oils, and cerebrosides.

And that it has a synonym:  N-docosanoic acid. This is getting frustrating.  It’s at times like these that I wish I did have all the answers, but – as I keep saying – I’m not a doctor.

Okay, one more shot – this time at the synonym. Oh boy, the information about this is written in deep chemistry terms.  That’s a foreign language to me.  I will have the same questions for my nutrition counselor when the test results are in as you probably have reading this blog.

Hey, maybe I could work with a word I know – like manganese. Oh, sorry, that means

manganesea mineral that is found in several foods including nuts, legumes, seeds, tea, whole grains, and leafy green vegetables. It is considered an essential nutrient, because the body requires it to function properly.

Thank you to WebMD at http://www.webmd.com/vitamins-supplements/ingredientmono-182-manganese.aspx?activeingredientid=182&activeingredientname=manganese for information we could all finally understand.  It doesn’t help to have loads of information about a component if the information doesn’t make sense to you.  I’m the one who’s meant to simplify explanations and I couldn’t understand enough to explain to you.

On a happy note, I am more than willing to share both my results and the explanations the nutritional counselor offers me when they arrive.  You know that saying about sometimes it just doesn’t pay to even get out of bed….Part 2Digital Cover Part 1

 

Until next week,

Keep living your life!

Not Exactly

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

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

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

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

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

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

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

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

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

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

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

  • Eating healthy foods. Choose foods low in fat and calories and high in fiber. Focus on fruits, vegetables and whole grains. Strive for variety to help you achieve your goals without compromising taste or nutrition. This type of diet may be referred to as a Mediterranean-style diet.
  • Getting more physical activity. Aim for 30 to 60 minutes of moderate physical activity most days of the week. Try not to let more than two blues dancersdays go by without some exercise. Take a brisk daily walk. Ride your bike. Swim laps. If you can’t fit in a long workout, break it up into smaller sessions spread throughout the day. The American Diabetes Association also recommends resistance training, such as weightlifting, twice a week.
  • Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.

Book CoverPart 2

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

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

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

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

Until next week,Digital Cover Part 1

Keep living your life!

Sticking It to Myself

First of all, thanks for your patience in the blog host debacle.  Just goes to show you don’t miss your water until the well runs dry.  Translated that means I love WordPress as the blog host and will not be making any changes from here EVER!  Further translated that means the name of the blog will always be SlowItDownCKD and we’ll always be at https://gailraegarwood.wordpress.com. I do believe I’ve just apologized.  I seem to be doing that a lot this week.

National Kidney MonthHappy third week of National Kidney Month. Seems so odd to place ‘Happy’ and ‘National Kidney Month’ in the same sentence.  Yet, it makes sense. How can we spread awareness of Chronic Kidney Disease if we don’t have a national effort? Hmmm, that sort of makes it happy.

Okay, down to brass tacks (or sharp jabs) now. During the first week of National Kidney Month, my PCP decided it was time to deal with my consistently high A1C test results.  Good timing on her part, huh?

Let’s go back just a bit to remind everyone what the A1C test is for. On page 54 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

Somewhere along the line, one of your doctors may order an A1C test.  This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.  This is important since quite a few CKD patients develop the disease from diabetes.Book Cover

Ah, so she’s trying to help prevent me from developing diabetes. That is the number one cause of CKD.  But I already have CKD.  Let’s see why it’s important for those with CKD to avoid diabetes, too.

I went directly to The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

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

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

Oh no!  I already have kidney damage. Now I could be exacerbating it. Wait a minute.  How is this happening?  I exercise, watch my renal diet, try to avoid stress, and get enough sleep.  Am I doing something wrong?

In type 2 diabetes, your body does not use insulin properly. This is called insulin resistance. At first, the pancreas makes extra insulin to make up for it. But, over time your pancreas isn’t able to keep up and can’t make enough insulin to keep your blood glucose levels normal. Type 2 is treated it with lifestyle changes, oral medications (pills), and insulin.pancreas

This is from the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html  A little clarification here: type 1 is the one in which people don’t produce insulin and type 2 is when the body is insulin resistant.

Wow. Just wow.  What’s tickling my mind now is the latest information I’ve read about statins possibly resulting in type 2 diabetes by affecting insulin resistance in a negative way.  Don’t get excited just yet.  Nothing’s been verified and I’m not even sure I understand the research.

All right, jabs next.  Since this is all new to me, I was told to check my blood sugar daily.  I looked dumbly at my PCP.  She caught the look and explained I could get my supplies at the pharmacy and sent over a script.  After four days of running around after my insurance, it was determined Medicare would not pay for the supplies since I didn’t actually have diabetes.  If Medicare doesn’t cover it, my secondary insurance doesn’t. So, I paid out of pocket.diabetes equipment

Off I went to the pharmacy, where the pharmacist explained what I would need. I looked dumbly at my pharmacist.  He caught the look and offered to get the supplies for me.  I’m sure he meant well, but he gave me the pharmacy brand meter which means I can only use their test strips.  It’s sort of a forced income for them.  He also gave me lancets (I used to think that was just the name of an English medical journal. Silly me.), but they weren’t ultra-thin and they hurt.  What he didn’t give me was the lancet device.  I didn’t know that existed until the diabetes counselor provided by my PCP told me about it.

I suspect I over checked because my fingertips are black and blue.  However 2 hours after eating is the norm.  I just took a break and monitored my blood glucose. It’s 121.  While that’s low for me, normal is in the 70-110 range, so even though I took 500 mg. of Metformin this morning, I’m going to have to exercise when I’m done (Doesn’t scare me; I have to exercise for the CKD anyway.) to lower that number.

I can see I’ll be blogging about this again. There is so much to cover here!Part 2

Digital Cover Part 1I keep forgetting to ask.  Would those who you who have read The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and/or The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 please write a review on Amazon.com. I am interested to hear what you think of these books.

Did you know you can register for the Phoenix Kidney Walk all the way up until that morning, April 19th?  If you’re going to register, why not join Team SlowItDownCKD?  Here’s a link to make that easy: kidneywalk.kintera.org.

Until next week,

Keep living your life.

DON’T K.E.E.P. It a Secret

National Kidney MonthHello, Week Two of National Kidney Month.  Surely, you’ve gotten yourself checked for Chronic Kidney Disease by now.  After all, more than 20% of us here in the U.S. have it. That’s 10 million people. Mind boggling, isn’t it. Here’s the kicker: that’s as of 2010 – five years ago now – according to The National Kidney and Urologic Disease and Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/#3

But, wait, it gets worse. If you, like me, are over 50, your risk has increased.  Over 70 {Awk!  That’s only two years away for me.}, it increases even more.  What hurts for me is that so many people don’t know they have Chronic Kidney Disease. I’ve read statistics placing this at anywhere from 20 to 90%.  Rather than go on again about if-I-had-been-diagnosed-at-stage-1-rather-than-stage-3-I-would-have-had-more-time-to-slow-down-the-progression-of-my-ckd, let’s just say it’s easy to have yourself tested.

I’ve written about just needing a simple blood test and a simple urine test.  You can even have this done via the usual blood tests you already take if you usually take blood tests.  I have my pcp’s and nephrologist’s blood draw orders combined if they fall within two weeks of each other – with my doctors’  blessings. It’s not cheating, folks; it’s one less needle in your arm as I see it.

Well, what about if you don’t have blood tests regularly?  You could ask your PCP to write you orders for this. Most won’t do so without a visit, though.  Let’s say you don’t have the money, or can’t get an appointment early enough.  What then?K.E.E.P.

That’s where K.E.E.P. comes in. The acronym stands for Kidney Early Evaluation Program and is offered by the National Kidney Fund.  According to their website, this is what is offered.

  • Risk Survey

  • Body Mass Index (BMI): Height and Weight Measurements

  • Blood pressure check

  • ACR urine test for albumin (a type of protein) – For individuals at risk only!

  • Free educational materials

  • Opportunity to speak with a health care professional

Notice, no blood test.  Think of K.E.E.P. as a place to begin your kidney education. That risk survey and the urine test for “at risk” individuals are important parts of the program.  Over 50 – go to a K.E.E.P. event. Over 70 – definitely go to one.  These are not the only “at risk” definers, though. Add in the following.

  • Anyone with high blood pressure, diabetes

  • Anyone with a family history of kidney failure

  • African-Americans, Hispanics, Asians, Pacific Islanders and American Indians

  • Individuals who are obese (body mass index of 30 or above)

Now you can see why your BMI is measured and your blood pressure read.   Thank you to the National Kidney Fund at https://www.kidney.org/keephealthy for the above information.  If you’re interested – and I’m sure hoping you are – you can find the locations and dates of these on the upper right hand corner of the same page.  You’ll have to enter your geographical information, but that’s it.

That’s another option, but budgets are being cut all over the place.  So let’s say there’s no K.E.E.P. event near you. What now? How about the Path to Wellness program? What’s that, you say. It’s a partnership between the renal and heart communities for the following purpose according to the website of the Cardio Renal Society of America at http://www.cardiorenalsociety.org/ {The website does seem to be aimed toward medical professionals.}

Public Health Education and Early Detection

Path to Wellness is an integrative community-based screening program addressing the interconnections between kidney disease, heart disease, and diabetes. It encourages utilization of community-based or primary care services and empowering a diverse demographic of at-risk patients to make significant, positive changes in their personal well-being and quality of life.

In Arizona, the Arizona Living Well Institute is also involved in this project.  Dr. J. Ivie, the Director of Patient Services at the National Kidney Foundation of Arizona provides a more patient oriented description of the event.

Path to Wellness has already touched close to 400 Arizonans at risk of diabetes, heart disease and kidney disease by providing education, screening, self-management skills and connection to a medical home.  We are scheduling the first screening event of 2015 on Saturday, March 28th at the Salvation Army KROC Corps Community Center near South Mountain in Phoenix.

By the way, they are calling for volunteers to help out at this program, so please contact Dr. James Ivie via any of these methods if this interests you. I was recently made aware that high school students need to perform community service as a graduation requirement and was wondering if this is applicable if the students are over a certain age.  Again, a question for Dr. Ivie.

Phone:         602.845.7905

Fax:              602.845.7955cardiovascular

Address:      360 E. Coronado Rd. #180

                      Phoenix, AZ 85004

Email:          www.azkidney.org

Digital Cover Part 1I like to perform community service, too.  In this case, that service is for my kidney community.  Hmmm,  World Kidney Day is March 12. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now available in both print and digital versions on Amazon.com.  The logical connection between the two for me is that World Kidney Book will be the day this book is free.  Remember I offered The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 free on February 2nd because it was my birthday? {Doesn’t every author offer their books free on their birthday?} This works the same way.  You just order the book.Part 2

Here’s how my mind works: I have dissolved in laughter because I just realized I was wondering if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is feeling left out because there’s never been a freebie day for that book.  I get it!  It’s a book {but it’s my baby.}Book Cover

Whoa!  I’ve been getting calls that the blog address no longer works.  After a little gentle questioning, it came out that the callers were using the old address: https://gailrae.wordpress.com.  If you use that address, you’ll receive the following message:

“gailrae.wordpress.com is no longer available.  The authors have deleted this site.”  No I didn’t! I just changed the name to gailraegarwood.wordpress.com.  I’ll consider this a reminder to myself to leave well enough alone.

I followed a forum user’s advice to simply change the name, not realizing all the old blogs will be deleted.  I thought the site was being deleted and you would be redirected to the new address for all the blogs.  Silly me.  I am extremely thankful The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 were published before this mini catastrophe,  but am still not happy with it.  Oh well. Might as well choose it since I have to do the work anyway.

Hang on while I recreate the blog.   Well, actually, if you’re reading this, it’s already recreated.  Yay!

Until next week,

Keep living your life!

Paint on My Nails

I am happy to say that we have had quite a few celebrations lately.  Abby successfully changed careers from insurance to municipal funding.  Lara was promoted to the first female Krav Maga head instructor in Phoenix. Nima started her New York tour company (Spellbound… give her a call.). firworksOne of my son-in-laws changed careers, too, and is now the CEO of an established firm.  Oh, and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was published.

Having four grown daughters now and in the throes of Macular Degeneration which is now at the point of I-can’t-see-my-nails-clearly-enough-to-do-them-myself (Why, oh why, couldn’t it be I-can’t-see-the-dishes-clearly-enough-to-do-them-myself instead?), I caved.  I don’t really like anyone fussing with any part of my body, but I wanted to look really nifty for each of these celebrations.  So I went for a manicure/pedicure again…and again…and again… and then I got to thinking.

Indeed, there is a relationship between Chronic Kidney Disease and nail polish, but it isn’t exactly what I expected.  I scurried right over to DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/  and found the following.

Nitrogen waste products build up in people with CKD, which can lead to damaged fingernails and toenails. Show your doctor if you have any abnormal change in your nails such as:

  • Yellow or opaque coloring
  • Brittle nails
  • Pitted nails (can easily break off or fall off)painted nails
  • Linear depressions across the fingernail (called Beau’s lines)
  • Ridge-shaped nails
  • Raised ridges, thin and concave shaped (called koilonychia)
  • White streaks, spots on the nails (called leukonychia)

It’s clear you can’t see these damage indicators if you can’t see your nails.  All right then, maybe I could have my nails done for the occasions, then take off the polish or the gel tips after.  Would that work for me, I wondered?

The concern over the chemicals found in nail polishes—and gel manicures—are {sic} not new, but the link to cancer, however, is. In a recent article published in the  Journal of the American Academy of Dermatology, Chris Adigun, M.D., an assistant professor of dermatology at NYU School of Medicine, emphasized the dangers of frequent use of gel manicures.  ”The essential UV light required during the application of the gel is a risk factor for skin cancer,” wrote Dr. Adigun.  “[And] in general, any manicure left in place for an extended period of time is not a good idea Journal of American Dermatologybecause you are a not seeing what is going on underneath the nail polish,” he says.

Frequent gel manicures can lead to nail thinning, brittleness, peeling, and cracking. Or worse, gel polish can hide nail discolorations that can signal various lung, heart, kidney {my italics} and liver diseases, as well as diabetes and anemia.

VidaVibrante.com at http://www.vidavibrante.com/2013/08/19/gel-manicures-when-too-much-of-a-good-thing-is-bad-for-your-health/  is not a site for CKD patients specifically, nor is it a medical site.  Yet, that’s where I found the above medical cautions. This is not looking good.

I was surprised to find that WebMD at http://www.webmd.com/beauty/nails/20120411/is-your-nail-polish-toxic had this information.

In recent years, some nail product makers have removed these chemicals {This refers to dibutyl phthalate, toluene, and formaldehyde.} from their products, then labeled them as non-toxic.

“What we found out is that in many of the cases the label was inaccurate,” Lang tells WebMD. “And that’s really what our message is. We don’t know if our samples are representative of the industry.”

Some products that did not carry a toxic-free label actually had none of the chemicals in them, the researchers also found.

Encarta Dictionary tells us toluene istoulene

a colorless liquid aromatic hydrocarbon resembling benzene, but less flammable. Use: solvent, high-octane fuel, organic synthesis.

And we put that on our nails?  Willingly?  I think that’s the end of thinking about gel tips for me, but does it mean I have to give up this new practice of having my nails done entirely?  Even for special occasions?  Oh, okay, lots of special occasions.

Ummm, so what – if any – brands are safe? I jumped over to EcoWatch at http://ecowatch.com/2014/02/19/7-nontoxic-nail-polish-brands/ for some brands. Zoya, Piggypaint, Suncoat, Honeybee Gardens, RGB, Sheswai, and LVX are the brands they named.

I don’t know very much about cosmetics – including nail polish – but I’m certainly willing to give these brands a try. Allow me to join the rank of those who misquote the Bard’s line from Macbeth: Vanity {It’s really “frailty.”}, thy name is woman.Kidney Arizona

But I’m not misquoting this. The Phoenix Kidney Walk is April 19th and we have a team!  SlowItDown is the umbrella group (not really sure that’s the right word) for all the books and the blog.  Remember asking me to come out from behind the typewriter?  This is it!  Use the walk as an excuse to introduce yourself to me or, better yet, join the team.  Just in case you don’t remember how:

Go to Kidneywalk.kintera.org. You’ll see “Register Here” in blue on the top left. Click it. Then you’ll need to sign an agreement, click join a team, choose SlowItDown from the dropdown. Hit continue and it will ask you to create a sign on with the usual basic questions asked.

If you’d prefer not to walk, but do want to donate, please do that in Team SlowItDown’s name.  Thanks, all.

Big news!  Every third order for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 will be FREE from now until the end of the month.  We already had an order-it-free day on my birthday and now Amazon has come up with this deal.  Yay, Amazon.  I urge you to The_Book_of_Blogs-_M_Cover_for_Kindletake advantage of this. To make certain there’s a free book in the deal for you, ask two friends to order the book at the same time.

Keep an eye out for Part 2, also.  I’m working really hard to have that out by the end of this shortened month. Funny story about why there’s a Part 1 and a Part 2.  No matter how I edited, cut, shortened the original version of the book, it came out to over 600 pages.  I could barely hold it!

Until next week,

Keep living your life!

It’s All Connected

About those random posts you may be receiving from me… I am transforming the blog into a book as promised.  However, I don’t really know what I’m doing and am learning on the job, so to speak.  I Kidney Book Coverwouldn’t be at all surprised if you heard me yelling, “OH, NO!” (and worse) at least once a day from now until the process is complete.  I guess you’re bearing witness to my learning process. Boy, am I ever grateful you’re a patient lot!

Now, what I really wanted to write about. I got a call from my primary care physician telling me that while I had improved my BUN, Creatinine, BUN/Creatinine Ratio, LDL, and eGFR levels on my last blood test, the Microalbumin, Urine, Random value was abnormal at 17.3. I checked online to make certain I had heard her correctly.

Dr. H. Zhao practices at Deer Valley Family Medicine here in Phoenix.  The practice started using a site to report your results as soon as they’re available, sometimes the next day.  I wonder why I got that call at all when this process is in place.

When I finally finished congratulating myself for all these improvements, I started to question why the Microalbumin value was out of range.  I knew it hadn’t been out of range last year, but I did have Chronic Kidney Disease.  That in itself would have meant it would be out of whack, wouldn’t it?

Here we go again.  I pulled out my trusty copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and turned to Chapter 5, “What Flows Through You,”  The Random Urine Tests,  number 9299 on page 52 (Honestly? I used the word search function for the digital book, even though I had the print copy in front of me.  It’s just plain easier!) and found:

“tests for micro, or very small amounts, of  albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so theBook Cover

  albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Of course I wanted more.  We all know micro from micro-mini skirts (Are you old enough to remember those?) and microscope.

Wait, if protein in the urine “may be an indication of kidney disease” – which I have – why was this a problem?  Or was it a problem?

Both high blood pressure (which I do have) and diabetes (which I don’t) could be the cause since both may lead to the proteinuria (protein in the urine, albumin is a protein as mentioned above) which may indicate CKD. Microalbuminia could be the first step to proteinuria.

But, as usual with medical conditions, it’s not that black and white.  I scurried over to our old friend WebMD at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine to look for other risk factors and found these:

  • Obesity
  • Age over  65
  • Family history of kidney disease
  • Preeclampsia (high blood pressure and proteinuria in pregnancy)
  • Race and ethnicity: African-Americans, Native Americans, Hispanics, and Pacific Islanders are more likely than whites to have high blood pressure and develop kidney disease and proteinuria.

While I’m well past child bearing, I’m also over 65 and, ummm, (how’s this for hedging?) clinically obese.  Does that mean proteinuria is to be my new norm?

NIHMaybe there’s something more I can do about this.  According to Skip NavigationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES‘ National Kidney and Urologic Diseases‘ Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/

“In addition to blood glucose and blood pressure control, the National Kidney Foundation recommends restricting dietary salt and protein. A doctor may refer a patient

to a dietitian to help develop and follow a healthy eating plan.”

 This is nuts!  I have CKD.  I already restrict myself to five ounces of protein a day. I’ve abolished table salt from the house and watch the salt content in the foods I eat. I’m handling my blood pressure with Losartan/HCTZ. (See the next paragraph.) I haven’t progressed from microalbuminuria to proteinuria, yet I’m still doing more damage to my body.

MedicineNet at http://www.medicinenet.com/losartan_and_hydrochlorothiazide/article.htm explains the Losartan/HCTZ very well:blood pressure 300dpi jpg

“Losartan (more specifically, the chemical formed when the liver converts the inactive losartan into an active chemical) blocks the angiotensin receptor. By blocking

the action of angiotensin, losartan relaxes the muscles, dilates blood vessels and thereby reduces blood pressure….Hydrochlorothiazide (HCTZ) is a diuretic (water

pill) used for treating high blood pressure (hypertension) and accumulation of fluid. It works by blocking salt and fluid reabsorption in the kidneys, causing an

increased amount of urine containing salt (diuresis).”

Uh-oh, that leaves blood glucose, which has never been high for me.  However, my A1C has been high since this whole CKD ride has started.A1C

Let’s back track a little. The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585  tells us:

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in

red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I don’t have diabetes…yet.  It’s becoming clear that I will – in addition to worsening my CKD – if I don’t pay even more attention to my diet and become more stringent about sore kneeexercising.  It’s sooooo easy to say not today when the arthritis rears its ugly head…or knee.

It’s been said there’s no way to do it, but to do it (by me, folks.  Ask my children.) So now I need to take my own advice and get back to the stricter enforcement of the rules I know I need to live by.  After all, they let me live.

If you ever needed proof that the body is an intricate thing with all its part being integrated, you got it today.

Until next week,

keep living your life!

Never NSAIDS

Never what?  One of the first rules we learn as Chronic Kidney Disease patients is never to take a NSAID, a non-steroidal anti-inflammatory drug.  Raise your hand if you remember why.  Hello fellow with the beard in the back of the room; what do you say?

Correct!  They further damage the kidneys.  Can you tell us how?  No?  Don’t feel bad.  Most people can’t, even those suffering from CKD.

What was that?  Oh, you want over the counter (non-prescription) names of some NSAIDS?  Sure.  Here’s a list courtesy of Nsaids-list at http://www.nsaids-list.com/:

  • Aspirin (Aspirin is a brand name; the chemical is called acetylsalicylic acid)nsaids
  • Celecoxib (Celebrex)
  • Dexdetoprofen (Keral)
  • Diclofenac (Voltaren, Cataflam, Voltaren-XR)
  • Diflunisal (Dolobid)
  • Etodolac (Lodine, Lodine XL)
  • Etoricoxib (Algix)
  • Fenoprofen (Fenopron, Nalfron)
  • Firocoxib (Equioxx, Previcox)
  • Flurbiprofen (Urbifen, Ansaid, Flurwood, Froben)
  • Ibuprofen (Advil, Brufen, Motrin, Nurofen, Medipren, Nuprin)
  • Indomethacin (Indocin, Indocin SR, Indocin IV)
  • Ketoprofen (Actron, Orudis, Oruvail, Ketoflam)
  • Ketorolac (Toradol, Sprix, Toradol IV/IM, Toradol IM)
  • Licofelone (under development)
  • Lornoxicam (Xefo)
  • Loxoprofen (Loxonin, Loxomac, Oxeno)
  • Lumiracoxib (Prexige)
  • Meclofenamic acid (Meclomen)
  • Mefenamic acid (Ponstel)statins
  • Meloxicam (Movalis, Melox, Recoxa, Mobic)
  • Nabumetone (Relafen)
  • Naproxen (Aleve, Anaprox, Midol Extended Relief, Naprosyn, Naprelan)
  • Nimesulide (Sulide, Nimalox, Mesulid)
  • Oxaporozin (Daypro, Dayrun, Duraprox)
  • Parecoxib (Dynastat)
  • Piroxicam (Feldene)
  • Rofecoxib (Vioxx, Ceoxx, Ceeoxx)
  • Salsalate (Mono-Gesic, Salflex, Disalcid, Salsitab)
  • Sulindac (Clinoril)
  • Tenoxicam (Mobiflex)
  • Tolfenamic acid (Clotam Rapid, Tufnil)
  • Valdecoxib (Bextra)

Yes, young lady in the third row. This is a bit more detailed a list than you’d expected? Okay, let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for a simple explanation of NSAID.  Please turn to page 134.  Those of you with digital copies of the book, search the phrase.  Everyone have it?

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

So now we’re back to the original question.  How do NSAIDS further damage our kidneys?

But first I want to tell you just how important it is not to take them by sharing an anecdote with you. The first year after my CKD diagnose, my nephrologist spent a great deal of his time trying to convince me that I had caused by own CKD by taking NSAIDS very, very often.  He might have been right with another patient, but I was never one to rely on medications.

I would rather have used natural means to relieve myself of pain.  I did have arthritis and usually walked off the pain.  As for headaches, I would do the darkened room, rub the temples, mute the electronics and – my magic – ask one of my daughters to kiss my forehead routine. (Class!  No snickering.  It worked for me.)

Yet, overuse of NSAIDS was so common a cause of CKD that this was the only cause my nephrologist could see.  A while after this, studies showed that aging kidneys will lose their filtering power at the rate of ½% per year.  He switched to this cause, which I could more readily accept.

Yes, yes, I know we were going to discuss how NSAIDS further damage the kidneys today.

banner-nihlogoBy the way, as early as 1984, the National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483278/?page=2 published a journal article from the Canadian Medical Association Journal entitled Adverse effects of NSAIDs on renal function.

Why no, I’m not procrastinating at all.  Here’s the answer to today’s question.

I found this explanation at a site that’s new to me (http://www.empowher.com/wellness/content/what-nsaids-do-your-kidneys):

All NSAIDs work by blocking the action of cyclooxygenase (COX). This enzyme performs a key step in the synthesis of prostaglandins [ me here with a definition of this word from the freedictionary.com at  http://medical-dictionary.thefreedictionary.com/Prostaglandins – a group of potent hormonelike substances that produce a wide range of body responses such as changing capillary permeability, smooth muscle tone, clumping of platelets, and endocrine and exocrine functions. They are involved in the pain process of inflammation.], which produce many effects in the body. Two of the effects are pain and inflammation for injured tissue. Other effects include protection of the stomach and homeostasis (regulation) of kidney function. The COX enzyme comes in two forms, COX-1 and COX-2. For a while, it was thought that COX-2 produces the pain and inflammation prostaglandins, while COX-1 produces the protective and regulatory prostaglandins.

The underlining is mine. That’s right, NSAIDS interfere with the regulation of the kidney function.  How?  Another good question from the middle of the room.

According to the National Kidney Foundation at http://www.kidney.org/atoz/content/painMeds_Analgesics.cfm,

“…because they reduce the blood flow to the kidney.”

So now we need to know why blood flow to the kidneys is important for CKD patients.

Blood Oxygen Cycle Picture 400dpi jpgIf you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.

Reduce the blood flow and you’re exacerbating the problem you already have… and all you need to do is avoid NSAIDS to avoid this problem. You’re right, class, that’s not exactly true, but it will help you preserve more of your kidney function.

Any questions for me?  For each other?

Well then, thank you for being such a willing and involved group of students.

While we all know this isn’t really a classroom and I’m not a doctor, this should answer a great many of the questions I’ve received via email or comments.

I’m also looking for first source research on both chia seeds and Goji Berries for a reader.  It seems there’s quite a bit of conflicting information about the safety of these two for CKD patients.  Please send along what you have, but first source only (not opinion, but fact).

It’s been my pleasure, folks.

Until next week,

Keep living your life!

Number Three on The List

“Other studies have suggested that once diagnosed with kidney disease, weight loss may slow kidney disease progression, but this is the first research study to support losing belly fat and limiting phosphorus consumption as a possible way to prevent kidney disease from developing.”Vassalotti Photo June2010  Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation  11/3/13

Why has this little gem not caused more positive uproar?  We already accept that high blood pressure and diabetes are the two leading causes of Chronic Kidney Disease and that preventing each may lessen your chances of developing the disease.  Are we now looking at a third deterrent to developing CKD?

When I first wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I was so eager to spread the word that I called Dr. Vassalotti and asked him to read the book.  He was encouraging, and oh-so-willing to discuss anything CKD.  I immediately trusted and believed what he had to say… and believe him now, especially with the research studies behind him.

So what is phosphorous, anyway?  I defined it in my book as

“One of the electrolytes, works with calcium for bone formation, but too much can cause calcification where you don’t want it: joints, eyes, skin and heart.”Book Cover

Hmmm, I don’t see any relation to preventing CKD there.  I researched my usual sites and found that they also discussed the effects of phosphorus on the bones in CKD, but nothing about how limiting it might prevent the disease from developing. 

You can find an abstract of the original study (but it’s rough going unless you have a medical background) at: http://www.ajkd.org/article/S0272-6386(13)00825-1/abstract. By the way, this is a well-respected journal, should you be interested in taking a gander. 

It was too technical for me, so I keep referring to the Medical News Today article.  In research work, this is called a secondary source.

AJKD Okay, let’s take another look at The American Journal of Kidney Disease’s information about this study as it was covered by Medical News Today at: http://www.medicalnewstoday.com/articles/268144.php.

But first, here’s what I found about phosphorous at MedlinePlus, a service of the U.S. National Library of Medicine at The National Institutes of Health   (http://www.nlm.nih.gov/medlineplus/ency/article/002424.htm),

“It plays an important role in how the body uses carbohydrates and fats. It is also needed for the body to make protein for the growth, maintenance, and repair of cells and tissues.”

This is new information to me and makes sense according to the article in Medical News Today.  So we’re not just dealing with phosphorus’s importance in bone health, but in the body’s use of carbs and fats.

If phosphorous is not doing its job as an electrolyte, there’s a good chance you are gaining weight. Think about all those carbs and fats not properly being eliminated from your body.  More caloric intake equals fat development.  (I do realize we’re not taking exercise into account here.)

This sentence from The Huffington Post’s Healthy Living section last March caught my attention in a big way: “Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would). “ You can read the entire article at: belly fathttp://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

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

“The persistent inflammatory state is common in diabetes and chronic kidney disease (CKD).”

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.  All we need to know now is how this possible inflammatory state can cause CKD.

Thank you to Medical News Today for making it clear in this article:

“The researchers from Johns Hopkins claim that reducing your waist circumference and cutting down on dietary phosphorus have been linked to lower levels of protein in the urine (albuminuria). The presence of this protein in urine is one of the first indicators of kidney disease.”

chocolateI exercise.  I follow the kidney diet.  What was I eating before I developed CKD that might have contributed to its onset?

Although I considered myself a health nut, I loved chocolate…milk chocolate. Yep, high in phosphorous.

As I researched different sites, I realized being a health nut was exactly the opposite of what I should have been.  All of the following are on the majority of high phosphorous food lists: quinoa, oats, bran, milk, cheese, whole wheat, whole grain, dried beans or peas, brown rice or wild rice.

If you’re identifying with me, do not – I repeat: do not – beat yourself up.  Remember the connection between high phosphorous levels, belly fat, and CKD is new information.

Here’s a hint: avoid processed foods since they have phosphorous added to extend their shelf life.  I learned that somewhere along the way in my CKD journey, probably from my renal nutritionist. You can also add a recent product, flavored water, to the list of high phosphorous foods to avoid.

Unfortunately, phosphorous is not usually listed on labels.  Although, I did see PHOS listed once or twice.  Hopefully, it will become common usage to list phosphorous in the near future.

When I was a young woman, I wondered why I should keep up with the latest scientific research.  After all, new discoveries were making what I already learned obsolete on a daily basis.  Now I know why.

I have two daughters, two step-daughters, three almost sons-in-law, and a husband who loves me.  I want to be around to be part of their futures.  If it takes constant monitoring of the new CKD information, I’ll do it.

We leave for New York on Wednesday and I’m finally getting excited.  One or two medical emergencies in New York both kept me from being excited and wanting to hurry up to be there at the same time.  They are being resolved as I write.

AND I get to see Nima, my one child still living in New York. Oh, and friends of very, very long standing and my niece and her family.  Hah! I’m so excited now I can barely sit still to type. Nothing like dancing at the computer.NYC

Until next week when I’ll publish from The Big Apple,

Keep living your life!

Baby, It’s Hot Outside

I just caught up to the fact that it’s June.  No, it wasn’t the calendar that told me, but the temperature.  We live in Arizona and its hot, dry heat or not.  That means cooling off any way you can. IMG_0584

This weekend, we finally took the three hour round trip drive to visit my friend and her family.  Her five year old daughter proudly showed off the family’s new addition since I’d been there last – a wonderful, cooling swimming pool.  I was tempted, but the 105% temperature kept me inside with the air conditioning.

That’s when I was offered some filtered water.  Did I want ice? I was asked.  I immediately shook my head.  “CKD, no ice, please.”

My friend cocked her head.  Her father had had a kidney transplant so she was well aware of the renal diet.  True, her father was treated in Korea, so there might have been some differences in treatment, but ice?

She asked me why and I immediately knew what I was going to blog about today.

For years, I’ve misunderstood something my nephrologist said.  I heard, “Don’t use ice.”  What he really said was something like, “If you use ice, you need to count the cubes in your fluid intake.”

I’ve spent time since Saturday researching the ice question and found nothing about avoiding ice.  I did find one warning about cold beverages from DaVita at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894 : “Be careful of very cold beverages, which can cause stomach cramps.”

The lesson I learned from this misunderstanding of what I thought I heard is to recheck what you think you know every once in a while.  After all, I thought I had the diet down pat.

Hah!  I forgot that I was terrified when I was first diagnosed and thinking I was going to die imminently. I adhered strictly to what I heard and, apparently, adhered just as strictly to what I thought I’d heard.

sun-graphic1Wait a minute… maybe I need not have avoided the heat, either.  I researched that, too.  Just as with ice, I found a general warning about the elderly, but nothing specific to CKD.

““With the elderly, the heat accumulates in their bodies over hours to days. If you have a long heat spell, the elderly person accumulates heat through each of those days because they can’t really eliminate or dissipate the heat,” explains Dr. Crocker. “Sometimes it’s because of a medication, sometimes it’s a lack of mobility, or in some cases the older you get, the less active your sweat glands are, so it becomes harder and harder for you to eliminate heat.”

This is from The Austin Diagnostic Clinic at http://www.adclinic.com/2012/08/hot-summer-days-challenging-dangerous/#.U5X-ZKROUY0.

By the way, National Public Radio (NPR) has a fascinating blog about the term ‘elderly’ at http://www.npr.org/2013/03/12/174124992/an-age-old-problem-who-is-elderly.  While 65 was the accepted age for elderly here in the USA for quite some time, this is now under debate.  I, however, still envision an elderly person as frail and delicate… something I’m not.

But, again, there was nothing specific to CKDers in the quote above.  In thinking about it, I began to wonder if the risk of dehydration from the summer heat is the problem for us.

According to The National Kidney Fund at http://www.kidney.org/atoz/content/kidneysnottowork.cfm

“Kidneys can become damaged if they are not getting good blood flow. This can happen if you become dehydrated or seriously ill.”

Aha!  This was starting to make sense.  WebMD at http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview explains this for us.

“Usually your body can reabsorb fluid from your blood and other body tissues. But by the time you become severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.”ice water

Okay, so we know we need to drink fluids, especially in hot water. Our kidneys are already having a hard time cleaning our blood effectively and we are reabsorbing ineffectively cleaned blood prior to this point of dehydration.

But how do we know if we’re becoming dehydrated? What are the symptoms? I turned to my standby, the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/dehydration/basics/symptoms/CON-20030056 for the symptoms of mild dehydration:

  • Dry, sticky mouth
  • Sleepiness or tiredness — children are likely to be less active than usual
  • Thirst
  • Decreased urine output
  • No wet diapers for three hours for infants
  • Few or no tears when crying
  • Dry skin
  • Headache
  • Constipation
  • Dizziness or lightheadedness

And then I laughed.  I experience one or more of those symptoms at one time or another.  The clinic does make the extremely helpful point that the color of your urine is a good indicator of dehydration. If it’s clear or light in color, you’re fine.  If it’s dark, start drinking!  Interestingly enough, having CKD is already a risk factor for dehydration so let’s not make it worse for ourselves.

So how do we prevent dehydration?  What can we do if we can see if starting?

Obviously, drinking more fluids will help. I’m limited to 64 ounces in a day, but I get creative in summer. Sometimes, I will have that half cup of ice cream.  Watermelon magically (hah!) appears on the table.  Now that I realize I don’t have to avoid ice, they too will become part of both the anti-dehydration campaign and the anti-dehydration campaign in our house.watermelon

I’m not sure if this is common knowledge, but dehydration can also cause kidney stones.  If you don’t have the fluid in your body to prevent crystallization, crystallization is more apt to happen.  Kidney stones are,

“Stones caused in the urinary tract and kidney when crystals adhere to each other.  Most of those in the kidneys are made of calcium.”

(Love this author’s style).  That’s from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, p. 133.

Talking about the book, it’s clear that digital outsells print and that in foreign markets, England outsells other countries.  I wonder if it’s the languages.  I’d thought about translations, but how would I be able to edit the texts if I don’t know the languages myself?  I’ve tried online translation, but the results are never quite what I originally wrote in English.

May you stay cool and hydrated.

Until next week,

Keep living your life!Book Cover

Good bye to National Kidney Month

I thought it over and decided to print the letter The National Kidney Foundation asked me to write for the syndicated Dear Annie column (Does anyone click on links anymore?). This is what was published on March 10, three days before World Kidney Day.

Annie’s Mailbox® by Kathy Mitchell and Marcy Sugar

Dear Annie:

I switched doctors six years ago — and my world fell apart. My new doctor insisted on all kinds of new tests, and I’m glad she did. Simple blood and urine tests let me know that there was a good possibility my kidneys weren’t functioning well.

I didn’t know that there are rarely any symptoms until the kidneys are failing. I didn’t know that one in three American adults is at risk for kidney disease. I didn’t know that high blood pressure and diabetes are two of the leading causes of this disease. But I learned quickly that early detection and proper treatment can slow its progress.

I learned so much in the following months: why I need to watch my weight, why regular exercise helps and why I need to make sure my high blood pressure is under control. I’ve been able to maintain the same degree of kidney function since being diagnosed, but not without lots of information and changes in my lifestyle.

March is National Kidney Month. March 13th is World Kidney Day. Won’t you help me join the National Kidney Foundation in urging Americans to learn about the risk factors and simple blood and urine tests for kidney disease? There are many free kidney health screenings around the country. The National Kidney Foundation at kidney.org provides information about these screenings and about staying healthy.

Thank you,

Gail Rae-Garwood

Glendale, Ariz.

the National Kidney Foundation, Inc.

And Annie’s response:

Dear Gail Rae-Garwood:

Thank you so much for sharing your story. We hope our readers will take your advice and check for screenings in their area or discuss their kidney health with their personal physicians. We are sure your letter will help many. Bless you.

We all know I’m well beyond getting a kick out of seeing my name in print (sort of), so why the letter? And why the great desire – let’s make that passion – to spread Chronic Kidney Disease Awareness?

Let me offer you some more statistics from The National Kidney Foundation at http://www.kidney.org/news/newsroom/factsheets/FastFacts.cfm :

1 in 9 United States citizens have CKD.

Most of them don’t know they have it.

Blacks are three times more likely to undergo kidney failure.Book Cover

Hispanics are 1.5 times more likely.

Fewer than 17,000 have kidney transplants annually.

118,000 are on the waiting list for a kidney.

13 people die while awaiting a kidney transplant daily.

If your kidneys fail, only dialysis or transplant can keep you alive.

415,000 are on dialysis.

About 180,000 more are living transplantees.

Medical payments increase from $15,000 to $70,000 annually from stage 4 to stage 5 CKD.

Medicare pays $30 billion (yes, billion) annually on treatment for kidney failure.

image

(Photo by Nima Beckie.  Subject: Greater New York Kidney Walk participant tying his orange scarf on a lamp post midway across the Brooklyn Bridge.)

The National Center for Chronic Disease Prevention and Health Promotion at http://www.cdc.gov/diabetes/pubs/factsheets/kidney.htm offers more information:

More than 20 million people have CKD.

44% of new cases are caused by diabetes.

28% of new cases are caused by high blood pressure.warning

Between 1999 & 2010, more females than males developed CKD.

CKD occurrence increases in those over 50 years of age.

One of every three with diabetes develops CKD.

One of every five with high blood pressure develops CKD.

Men with CKD are twice as likely as women with CKD to develop kidney failure.

 

And now the National Institutes of Health at http://report.nih.gov/NIHfactsheets/ViewFactSheet :NIH

Cardiovascular disease is the main cause of death in dialysis patients.

Medicare is spending 6% of its payouts on kidney care.

Kidney disease runs in families.

warning

Of course, now you’re thoroughly grossed out and maybe scared out of your mind about ckd. Good! That’s exactly what I was aiming for.

I don’t see the point in you, your best buddy, your child, anyone who touches your life being diagnosed at stage 3 as I was. I wasted all of stage 1 and stage 2 when I could have been spending that time working to SLOW the decline of my kidneys so I could be one of the 80% of CKD patients who never needs dialysis or a transplant (and, no, I don’t mean because I already died).

And why did I was that much time instead of prolonging my life? I was never tested. That’s it. Simple, direct, and to the point. The fear here should be in having CKD and not knowing it instead of fearing you have it. If it turns out you don’t have CKD, I am extremely happy for you and maybe a bit envious. But if you do, let’s start working on prolonging your life NOW. You realize I’m not talking about a year or two, but decades here.

I want to see grandchildren, but my children aren’t ready for that yet. No problem. I am perfectly content to wait the five or ten years until they’re ready. By working hard at slowing the decline of my kidney function, I have the time to wait.baby-shots-5

The tests themselves are simple. Do you urinate? (You’d better be responding in the positive here or you’ve already got a bigger problem than CKD.) Then you can just urinate into a vial instead of the toilet. No special training needed. Ever have your blood drawn? Did you die from it? (I know, I know, but it’s a rhetorical question.) Okay, so have your blood drawn again and ask to be tested for Chronic Kidney Disease. It is not a separate blood test, but can be included in one you may be having anyway.

So it’s good bye to National Kidney Month, but not to taking care of yourself… say by having the blood and urine tests for CKD. Be a pal. If you can’t do it for yourself, do it for me. Don’t deprive the world of the pleasure of your company because you didn’t take the test.

Until next week,

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!

Keep That Liver Lively

It feels so good to be (relatively) healthy again. I’ve spent the last several weeks being tested, running to doctors, and feeling like I just plain didn’t want to move… not even for a good cup of coffee.  I like the way I feel now.  Maybe I rest more than I’ve been used to, but I get to do whatever I want again.  That’s the way to live.  I like it so much that I intent to keep my life this way.YGCnpYEUFRtlrF00_f9frLXF_JWiNWNHS9AVZmM1PxI

And that’s why I’m taking the series of Hepatitis B inoculations that are recommended for anyone with a compromised immune system. Chronic Kidney Disease presents us with one of those. Aren’t we just the lucky ones (she wrote with a keyboard that dripped sarcasm)?

“Hepatitis B is one type of hepatitis – a liver disease – caused by the hepatitis B virus (HBV). Hepatitis B spreads by contact with an infected person’s blood, semen or other body fluid. An infected woman can give hepatitis B to her baby at birth,” according to MedlinePlus, a service of the U.S. National Library of Medicine, National Institutes of Health located online at: http://www.nlm.nih.gov/medlineplus/hepatitisb.html.

liverLet’s backtrack for a little etymology here.  The Online Etymology Dictionary at http://etymonline.com/index.php?allowed_in_frame=0&search=hepatitis&searchmode=nl  shows the following: “hepatitis (n.)  1727, coined from Greek hepatos, genitive of hepar “liver,” from PIE root *yekwr- (cf. Sanskrit yakrt, Avestan yakar, Persian jigar, Latin jecur, Old Lithuanian jeknos “liver”) + -itis “inflammation.” While this is probably too much information, we can see that the term comes from the Greek for liver and the Latin for inflammation, and was first commonly used in 1727. The key word here? Liver.

Okay then, what’s the big deal with the liver you’re probably asking. While it performs over 500 different functions to keep your body going, one of its primary functions is to filter your blood – just like your kidneys.  If your kidney function is already compromised, you’ve got to be careful not to let your liver function become compromised, too.

We’ve all heard the stories about people with an alcohol dependency dying of cirrhosis – permanent scarring of the liver.  This is a Bubba Miseh. That’s Yiddish for an old wives’ tale.  You can have liver damage from any number of causes. Hepatitis B is one of them.

“Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver.”  That’s from the Mayo Clinic at: http://www.mayoclinic.com/health/hepatitis-b/DS00398.  I especially recommend their site because it is written in the English we all know and is easily understood.

According to the handout from the U.S. Department of Health and Human Services’ Center for Disease Control and Prevention which I was given by my doctor’s medical assistant, the inoculations come in sets of three.  I’ve had the first and was told to come back in a month for the second, with the third scheduled for a month after the second.  In other words, they are spaced over a period of six months.shot

But what if my primary care doctor hadn’t recommended these to me, how would I know if I have Hepatitis B?  According to MedicineNet.com at http://www.medicinenet.com/hepatitis_b/article, “Acute hepatitis B is the period of illness that occurs during the first one to four months after acquiring the virus. Only 30% to 50% of adults develop significant symptoms during acute infection. Early symptoms may be non-specific, including fever, a flu-like illness, and joint pains. Symptoms of acute hepatitis may include:

Those are fairly common symptoms for many illnesses and as many as half the people with this virus may not know they have it.  I might have been one of that 50%.  So might you.

For chronic (long term) Hepatitis B, like Chronic Kidney Disease, there are no symptoms until the damage is done and the liver starts to fail.

Am I urging you to be vaccinated?  No, you’re quite capable of making up your own mind.  Besides, as I keep mentioning, I’m not a doctor.  Did I start the Hepatitis-B inoculations?  Absolutely!  Life is sweeter than it’s ever been.  I want it to go on and on.virus

Talking about life going on, the project to bring Chronic Kidney Disease to the Native American reservations has a name: SlowItDown.  You can expect to see both a Facebook page and a Twitter account with the same name this week.

The National Kidney Foundation asked me to guest blog for them this month and I discussed the project there, too. The address for this is: http://nkfstayinghealthy.wordpress.com/2013/06/06/what-is-it-and-how-did-i-get-it-early-stage-chronic-kidney-disease-experiences/  The NKF expects to promote it on their own Facebook page tomorrow. While this is not the first time they’ve asked me to write for them, each time they do I understand the honor it is and I thank them for the opportunity to spread CKD information via their site.

You already know DaVita (DaVita.com) has offered to supply Chronic Kidney Disease Educators to the tribes within sixty miles of Phoenix.  I have been speaking with the Health Directors of several tribes, but need help getting on the reservations.  I’ve found one or two reservations with Diabetes Education Program that we could easily piggyback on, but none with Chronic Kidney Disease Education Programs.  My appeal to my readers? Please, if you know anyone who is Native American, have him/her email me at myckdexperience.com or ask them for their number or email address and send it to me.

Book CoverIt’s funny: this blog started as publicity for the book and yet I hardly mention it any more.  Thank you to those of you who have bought or recommended the book. Thanks to some lovely people I met at Landmark Worldwide (formerly Landmark Education) the book is now in British Columbia and at the Evans Community Army Hospital in Colorado.  Any way this news can be spread is a good way in my book.  Oh, I meant that literally and figuratively!

Until next week,

Keep living your life!

None of This Matters

Household tips I have learned via prepping the house for the wedding:                                                                 IMAG0208

1. Contact paper works well on bathroom windows for privacy.
2. Adhesive white board paper makes a good privacy screen on the shower door.
3. Trees and bushes cut back due to frost damage do grow back quickly.
4. Things break at the absolutely worst time: dishwasher, solar water heating panel, a/c.
5. None of this matters.

The most important one is #5.  We are preparing for one of the most special days for us – our wedding – and we’ll be married whether we discovered these things or not.

But I may not have been here for my wedding day if my Chronic Kidney Disease had not been discovered.  Once it was, I was given the tools to retard its progression and seemingly reverse it at times.

An even earlier discovery of my ckd would probably have been better. Okay, so I was seeing a Physician’s Assistant who wasn’t all that astute.  The readings were right there in my blood tests almost a year before I changed to a primary care doctor who actually cared.  I really liked the P.A. who had been taking care of me, but learned that liking a person doesn’t necessarily mean she is a good medical practitioner.

There are so many ifs here: If I had known earlier, could I have made sure my eGFR (estimated Glomerular Filtration Rate) didn’t dip as low as it was when I was finally diagnosed? If I had been seeing a doctor rather than a P.A. would she have caught the ckd earlier?  If the blood tests had been read carefully, would I have had the opportunity to get to work on preventing rapid progression in the decline of my kidneys?glomerulus

I will never know the answers to those questions, so – as #5 says – none of this matters … for me.  For you?  That’s another story.

Have you ever heard of KEEP?  That’s the Kidney Early Evaluation Program.  Notice the word ‘Early’ in the title. With ckd, the earlier you can detect the disease, the better. According to the National Kidney Foundation:

                            The goals of KEEP are to:

  • Raise awareness about kidney disease especially among “high risk” individuals
  • Provide free testing for people at increased risk for kidney disease
  • Encourage people “at risk” to visit a clinician and follow the treatment plan recommended
  • Provide educational information so that “at risk” individuals can prevent or delay kidney damage
  • Provide  clinician referrals for follow-up care, if needed
  • Provide ongoing information and support

You can read more about the program at: http://www.kidney.org/news/keep/KEEPabout.cfm

The KEEP Program is for all people, but the ‘high risk’ ones are the ones that may need to take immediate action.  What is ‘high risk’ you ask?

According to The National Kidney Center at: http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/  these are the high risk people:

“High risk groups for chronic kidney disease (CKD) include those with diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are also at increased risk.”

That definition covers quite a bit of ground.  For example, I have hypertension (high blood pressure) and am a Senior (Thank you for the capital letter, National Kidney Center!).  I don’t know if there’s any history of kidney disease in my family since the cousins my age don’t know of any, but our parents would never discuss their health with us.

Alright, so we need early detection.  Now, where can you find that?  On the home page of The National Kidney Foundation, there is an orange bar running across the page.  It has different pages on it. Hit the one that reads “Events.” Once you get to that page, scroll down and you’ll see the words, “Find a KEEP Screening Near You.”  Hit it. Voila!  You’ve found your local KEEP Screening.

The logical question here is, “What if there isn’t one near me?”  You don’t have to travel across state lines to find out if you have CKD.  Speak with your pcp (primary care doctor) and ask him or her to run a blood test and a urine test. While the results may not be crystal clear to a doctor who is not a nephrologist (kidney and hypertension specialist), high or low readings will be marked.  They will let your pcp know there may be a kidney function problem.bmp

The National Kidney Disease Education Program at The U.S. Department of Health and Human Services at http://www.nkdep.nih.gov/resources/kidney-disease-mean-for-me.shtml#results provides the following information and a really nifty diagram of reduced function kidneys for you:

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

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

kidney function

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

Blood:

BUN –

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

Creatinine

Creatinine is a breakdown product of creatine, which is an important part of muscle

Urine:

Creatinine clearance

The creatinine clearance test compares the level of creatinine in urine with the creatinine level in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle.

Thank you to MedLine Plus, part of the U.S. National Library of Medicine,  National Institutes of Health at http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm for the above information about the blood and urine tests.

Well if this blog isn’t enough to get you to check your kidney function, I just don’t know what is.The Table

Before I leave, European sales of the book are surpassing those of U.S. sales.  I don’t know if that means we have more access to specialists and information here or that Europeans are reading more. Do let me know if there is a practice that needs a book donated to it or needs books to use as prizes or give-aways at patient education sessions.

I’m forgetting the world outside of wedding prep and CKD!  Guten Pesach to those who celebrate Passover, which started last night, and a Happy Easter to those who will be celebrating that on Sunday.

Until next week,

Keep living your life!

World Kidney Day Is Only Six Years Old

Each Monday, I find it progressively more difficult to choose a topic.  I am amazed at how much information is being disseminated about kidney disease and its treatment and/or underlying causes these days.  Since March 8 is the sixth World Kidney Day, I thought we would go back to the basics to start today’s blog.  Thank you, again and again and again to The National Kidney Foundation for all the information they make available to us.  This is their World Kidney Day posting:

Top 10 Reasons to Love Your Kidneys

Sometimes the more you know, the more you love.  The National Kidney Foundation urges Americans to get to know two humble, hardworking organs: the kidneys.  To help raise awareness and appreciation for all the vital functions the kidneys perform, the National Kidney Foundation offers 10 reasons for Americans to love their kidneys and take steps now to preserve kidney health:

1. Filter 200 liters of blood a day, removing two liters of toxins, wastes and water

2. Regulate the body’s water balance

3. Regulate blood pressure by controlling fluid levels and making the hormone that causes blood vessels to constrict

4. Support healthy bones and tissues by producing the active form of vitamin D

5. Produce the hormone that stimulates bone marrow to manufacture red blood cells

6. Keep blood minerals in balance

7. Keep electrolytes in balance

8. Regulate blood acid levels

9. Remove drugs from the blood

10. Retrieve essential nutrients so that the body can reabsorb them

In my book, I discuss how important it is to tell every doctor you see about your Chronic Kidney Disease.  Notice #9. “Remove drugs from the blood.”  You may need to take a lower dosage of whatever drug was prescribed or, perhaps, take it less often.  If your kidneys are not fully functioning, the drugs are not effectively being removed from your blood.  It would be similar to willfully taking a drug overdose if you do not make your doctors aware of your CKD when they prescribe for you.  Make sure your pharmacist knows about your CKD, too.  You cannot rely on your doctors – specialists or not – to remember every warning on every label.  That’s where your pharmacist comes in.  He or she has that same information.  You are ultimately the one in charge of your health.  It makes perfect sense to draw upon all your resources.

I also discuss in my book the problem in my local hospital’s emergency room when I had a bladder infection.  Just in case you don’t remember, my primary care doctor wasn’t available, so her M.A. told me to go to an Urgent Care facility rather than wait since I have CKD.  When I arrived and told the receptionist I have CKD, she immediately sent me to the hospital emergency room in case I needed blood or other tests for which the Urgent Care wasn’t equipped.  After a battery of tests in the emergency room, sulphur drugs were prescribed, although I’d took them repeatedly about having CKD.  Sulphur drugs can harm the kidneys even more.

This got me to thinking about if I were brought into the e.r. under true emergencies conditions – as in unconscious.  How would they know I had CKD before they located someone who could tell them about my medical background?  Or access my records elsewhere? I knew the answer was a medical alert bracelet, but spent quite a bit of time ignoring the issue.  Then I got sick again – a simple flu – but the bracelet idea popped back into my mind full blown, so I started searching for one.

I wanted something that looked like jewelry, but not too much like jewelry because I have simple tastes.  So, I did what I do best: researched.  This is what I came up with:

I chose the black plate and had “Chronic Kidney Disease” inscribed on two lines on the back.  Now, the bracelet itself:

It’s jewelry like, something I’m comfortable wearing and it does the job of making me feel secure should I ever have a true emergency.  I’ll be adding  http://www.medicalidfashions.com/ to the blog roll later on.  They are one of several sites with the type of medical alert i.d. bracelet I’ve been discussing.  Feel free to click through now or wait for the address to be added to the blog roll.  You know, don’t you, that I have nothing to do with any of the companies I mention to you except that I want to share what I’ve found.

Ah, talking about sharing!  I found this review of the book on Amazon and walked on air for the rest of the day!

5.0 out of 5 stars The Best Info on Kidney Disease around!, February 20, 2012
This review is from: What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (Kindle Edition)

This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness. I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations. For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!

Got to go check out a symposium that sent me an invitation to exhibit.  This is a new one for me.

Until next week,

Keep living your life!