Needling Me

Years ago, as a young woman in my twenties (Could that really be at least 50 years ago????), I was horrified to discover I needed surgery for bleeding hemorrhoids. It was embarrassing, my younger self thought. It was private, my younger self thought. So my younger self looked for an alternative and discovered acupuncture. Not only would I be spared someone – even though that someone would be a doctor – dealing with private parts of my body, but I would also be spared the insult to the body that surgery can be… and my insurance covered it.

Hmmm, I was fully clothed and the needles didn’t hurt although I had expected the process to be painful. Best? I did get relief from the bleeding hemorrhoids and avoided the surgery.

Remembering that incidence today for some unknown reason, I wondered what – if anything – acupuncture could do for those of us with Chronic Kidney Disease. So, I went searching for information.  But wait, I’m getting ahead of myself – as usual. Let’s go back to talking about what acupuncture is.

Acupuncture is a form of medical treatment that’s been used for hundreds — even thousands — of years. Acupuncture originated in Asian medical practices. That’s why many licensure and oversight boards use the term ‘Oriental Medicine’ to classify acupuncture.

Acupuncture is practiced by tens of thousands of licensed acupuncturists. Expert acupuncturists train for three to four years. The training includes both instruction in the use of needles and instruction in diagnosing conditions. Practitioners have direct supervision from another senior or expert practitioner.

In addition to this training, acupuncturists must undergo testing from a national board of examiners and continue to take instructional courses each year to maintain their license.

The American Medical Association accepts acupuncture as a medical treatment, and some insurance companies may cover the cost of treatment.”

Thank you, Healthline at https://www.healthline.com/health/dry-needling-vs-acupuncture for the above information.

The University of California, San Diego, School of Medicine, Center for Integrative Medicine in the Department of Family Medicine and Public Health at https://medschool.ucsd.edu/som/fmph/research/cim/clinicalcare/Pages/About-Acupuncture.aspx  had a succinct description of the process.

“First, your acupuncturist will ask about your health history. Then, he or she will examine your tongue’s shape, color, and coating, feel your pulse, and possibly perform some additional physical examinations depending on your individual health needs. Using these unique assessment tools, the acupuncturist will be able to recommend a proper treatment plan to address your particular condition. To begin the acupuncture treatment, you lay comfortably on a treatment table while precise acupoints are stimulated on various areas of your body. Most people feel no or minimal discomfort as the fine needles are gently placed. The needles are usually retained between five and 30 minutes. During and after treatments, people report that they feel very relaxed.”

PubMed, part of the US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/28422526 concluded via a small, fairly recent study:

“Acupuncture at bilateral Hegu, Zusanli, and Taixi for 12 weeks reduced creatinine levels and increased eGFR levels. The study only provided a feasibility method for the treatment of patients with CKD. However, the results of this preliminary study warrant further investigation.”

I think we all need a little help here to understand this conclusion. The three words we are not familiar with are all acupuncture points. The Acupuncture Massage College’s site at https://www.amcollege.edu/blog/commonly-used-acupuncture-points explained in language I could understand.

“Large Intestine Channel: LI4, Hegu
This point is located on the back side of the hand between the thumb and first finger. The primary use of this point is to relieve pain and treat inflammatory and feverish diseases.

Stomach Channel: ST36, Zusanli
This point is located on the front of the leg, just below the knee. It is helpful for digestive disorders. Research shows that using this point results in positive effects in treating anemia, immune deficiency, fatigue, and numerous diseases.

Kidney Channel: KI3, Taixi
This point is located just behind the inner ankle. It is used for disorders in several areas of the body, including sore throat, toothache, deafness, tinnitus, dizziness, asthma, thirst, insomnia, lower back pain and menstrual irregularities.”

Inflammatory? CKD. Anemia? CKD. Immune deficiencies? CKD.  Kidney? CKD. Now we know why acupuncture can help us. There seems to be a split among doctors as to whether it will or not, so you’ll have to be careful to talk to your nephrologist. Some will give you an emphatic, “YES!”  Others will give you a questioning look. And still others will ask you, “Why bother?” Be prepared with your answers. You don’t want to alienate the doctor in charge of your treatment and you want to keep the lines of communication open. Well, at least I do.

 

If you’re excited about the idea of acupuncture, you may be asking yourself how to find a good, safe practitioner. Sure you can look in the phone book, but – just as with any doctor – what would you know about how this particular acupuncturist functions? Before I had CKD, when I was plagued by another medical problem but had already moved to Arizona away from my NYC acupuncturist, I asked my stepdaughter about the acupuncturist she saw. If your nephrologist is onboard, you can ask for a referral. Sometimes, your primary care physician can be a good source here, too.

If you’re not excited about acupuncture, don’t push yourself. My husband tried it once to please me and swore never to do that again because he just didn’t like it. Okay, he has other ways of dealing with his back pain. While I am in favor of acupuncture and plan to incorporate this into my medical team once I’m done with surgery and rehab, I also like peace in the house.

Until next week,

Keep living your life!

re·​ha·​bil·​i·​ta·​tion 

What! As if staying in the hospital for six to thirteen days weren’t enough, it turned out that I would be in a rehabilitation center for an additional six to eight weeks. Again, while this was for pancreatic cancer, many Chronic Kidney Disease patients who have had surgery may require a stay in such places, too. I look for new experiences, but not this kind.

human-438430Let’s go to my favorite dictionary, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/rehabilitation for the definition of the word.

“: to bring (someone or something) back to a normal, healthy condition after an illness, injury, drug problem, etc.

b: to teach (a criminal in prison) to live a normal and productive life

c: to bring (someone or something) back to a good condition”

I hope it’s clear that it’s the first definition we’re dealing with today.

Forgive me for being dense, but I still didn’t get how that’s going to be done. So I searched for help and MedlinePlus, which is part of the U.S. National Library of Congress which, in turn, is part of the National Health Institutes, at https://medlineplus.gov/rehabilitation.html did just that.

What happens in a rehabilitation program?a.d.

When you get rehabilitation, you often have a team of different health care providers helping you. They will work with you to figure out your needs, goals, and treatment plan. The types of treatments that may be in a treatment plan include

  • Assistive devices, which are tools, equipment, and products that help people with disabilities move and function
  • Cognitive rehabilitation therapy to help you relearn or improve skills such as thinking, learning, memory, planning, and decision making
  • Mental health counseling
  • Music or art therapy to help you express your feelings, improve your thinking, and develop social connections
  • Nutritional counseling
  • Occupational therapy to help you with your daily activities
  • Physical therapy to help your strength, mobility, and fitness
  • Recreational therapy to improve your emotional well-being through arts and crafts, games, relaxation training, and animal-assisted therapy
  • Speech-language therapy to help with speaking, understanding, reading, writing and swallowing
  • Treatment for pain
  • Vocational rehabilitation to help you build skills for going to school or working at a job

Depending on your needs, you may have rehabilitation in the providers’ offices, a hospital, or an inpatient rehabilitation center. In some cases, a provider may come to your home. If you get care in your home, you will need to have family members or friends who can come and help with your rehabilitation.”

Personally, I won’t need some of these such as cognitive rehabilitation, speech-language therapy, and vocational rehabilitation. Brain and speaking aren’t involved in pancreatic surgery and I’m retired. You may be in the same situation if you have rehabilitation or you may not. It’s a list that’s made unique for each patient. I’ve got to remind you here that I’m not a doctor; this is a lay person giving her opinion.

IMG_1843(Edited)

Hmmm, it seemed pretty clear that each type of surgery requires its own sort of rehabilitation. Now that we know what’s involved, let’s see who would be involved if you required rehabilitation after a surgery. WebMD at https://www.webmd.com/healthy-aging/rehab-after-surgery#1 offered a succinct, easy to understand answer.

Who Works With You

Different experts help with different parts of your rehab. Some people who might be on your team:

Physiatrist. He’s a doctor who specializes in rehab. He tailors a plan to your needs and oversees the program to make sure it’s going well.

Physical therapist. He teaches you exercises to improve your strength and the range you have when you move your arm, leg, or whatever part of your body had the operation.

Occupational therapist. He helps you regain the skills you need for some basic activities in your everyday life. He might teach you how to cook meals, get dressed, shower or take a bath, and use the toilet. He’ll also show you how to use gadgets that can help you care for yourself more easily, such as a dressing stick or elastic shoelaces. Some occupational therapists will visit your home to make sure it’s safe and easy for you to get around.

Dietitian. He’ll help you plan healthy meals. If your doctor has told you to avoid salt, sugar, or certain foods after your surgery, the dietitian can help you find other choices.

Speech therapist. He helps with skills like talking, swallowing, and memory. Speech therapy can be helpful after surgery that affects your brain.

Nurses. They care for you if you’re staying for a few weeks or months in a rehab center. They may also come to your home to help track your recovery and help you with the transition to life back at home.

Psychologist or counselor. It’s natural to feel stressed out or depressed after your surgery. A mental health professional can help you manage your worries and treat any depression.

It can take many months to recover from an operation, but be patient. A lot depends on your overall health and the kind of procedure you had. Work closely with your rehab team and follow their instructions. Your hard work will pay off.”

Looking over the list, I won’t need a speech therapist and neither would you if you have some kind of kidney related surgery. I’m not so sure about a psychologist or counselor, either. I’m sort of thinking that going through chemotherapy and radiation treatments without one, I won’t need one after surgery. Then again, I’ve never had major surgery before and I’ve been told this is major major surgery. However, should I find myself in a position where my medical team and/or I feel I need counseling, I would not hesitate to ask for it… just as I’ve asked for help with the cancer.ot

Rehabilitation offers so much. I had no idea this was available until my surgeon told me about it. Nor did I know that Medicare will pay for it… sort of. This is from Medicare at https://www.medicare.gov/coverage/inpatient-rehabilitation-care.

 

“You pay this for each benefit period:

  • Days 1-60: $1,364 deductible.*
  • Days 61-90: $341 coinsurance each day.
  • Days 91 and beyond: $682 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime).
  • Each day after the lifetime reserve days: all costs.

*You don’t have to pay a deductible for care you get in the inpatient rehabilitation facility if you were already charged a deductible for care you got in a prior hospitalization within the same benefit period. This is because your benefit period starts on day one of your prior hospital stay, and that stay counts towards your deductible.”

Excuse me while I go check my bank account.

Until next week,

Keep living your life!

Help When You Need It

One of the many people I met at the AAKP Conference who opened my eyes to things I’d never even though of before is Samantha Siegner from the Chronic Disease Coalition. We hit it off right away and I felt comfortable exposing my ignorance to her. Once she explained what the coalition does, I wanted all my readers to know about it. Happily for us, Samatha agreed to write a guest blog for us.

*****

Nearly half of all adults in the United States have one or more chronic health conditions, and the number continues to climb. By 2020, it is projected that over 157 million Americans will battle a chronic disease. While some chronic conditions can be prevented, others are inherited, or may develop as a result of numerous factors. Despite the prevalence of chronic disease, few organizations are specifically dedicated to addressing the needs of patients who battle all types of chronic conditions rather than a single disease.

The Chronic Disease Coalition (CDC) is national nonprofit organization that represents people battling a wide range of chronic conditions, including kidney disease, diabetes, arthritis, multiple sclerosis and more. As patients dealing with kidney disease or other chronic conditions know, it can be difficult to work, attend school or even get adequate health insurance coverage. Our organization works to not only raise awareness and educate the public about chronic conditions, but also to advocate for patients who need better access to care. Our mission is focused on exposing and addressing discriminatory practices and policies that are preventing patients from accessing necessary, often lifesaving care.

Discrimination based on a person having a chronic disease comes in various forms, but we most frequently see it occur in the school, workplace and with health insurance plans.

  1. School: For those looking to complete high school or even college, it can be difficult to regularly attend class or have the energy to complete assignments. For kidney patients, dialysis poses difficulty attending class, as you may be required to dialyze for several hours multiple times a week. It is important to educate yourself on the services offered by the school to ensure that you are receiving reasonable accommodation that support your effort to pursue education.

Our organization works with people to ensure that they are being treated fairly in the school system, read more in one patient’s story here.

  1. Workplace: Many people with chronic conditions may frequently visit the doctor’s office for treatment, response to a flare up or check-ups to ensure that their condition is being managed properly – these actions can require additional time off work. While it is not legal for an employer to ask about your medical history, some patients may disclose it. This can lead to a greater understanding and development of a process for how you miss work, but for others, it may lead to losing their job or being demoted.

The CDC helps patients by supporting legislation that protects the privacy of employee’s medical history and ensures that businesses and corporations cannot discriminate based on their health status. Additionally, we ensure that patients are educated on their rights within the workplace.

  1. Insurance: Unfortunately, insurance discrimination is all too common. Insurers institute a variety of practices to increase their bottom line at the expense of the patients, without consideration for the long-term health consequences. Some of the most common practices include, step-therapy or fail-first, lengthy prior authorization approval times, nonmedical switching and bans on charitable premium and copay assistance, which is a common way for insurers to target kidney patients.

Right now, insurers across the nation are targeting chronic disease patients who rely on charitable premium assistance to help afford the cost of their health care. By utilizing a loophole within a 2014 guideline issued by the Centers for Medicare and Medicaid Services, insurers are denying premium and copay payments made by charities, like the American Kidney Fund, on behalf of patients. As a result, patients are forced off their current health plan and left to find other options. This is a commonly used tactic to force patients off of private health plans and onto public plans, because the insurer doesn’t want to cover chronic disease patients that require expensive, regular treatment, like dialysis. While kidney patients are eligible for Medicare before the age of 65, a public plan may not meet their needs or cover services that can help a patient become eligible for a transplant.

The Chronic Disease Coalition is actively working to pass H.R. 3976, the Access to Marketplace Insurance Act to ensure that patients can access charitable premium assistance and choose the health plan that best meets their needs.

So how does the Chronic Disease Coalition work with kidney patients? In addition to advocating on behalf and beside kidney patients to ensure discriminatory policies don’t hinder their ability to access care, we work with patients in their communities to raise awareness and educate the public on kidney disease at an individual level and through our Ambassador Program.

After receiving an initial diagnosis, many people with kidney failure may not know what to expect from treatment, what questions they should ask their medical team and what changes may come to their daily life. Our Ambassador Program was developed on this understanding and is comprised of active advocates who battle chronic diseases and provide guidance, advice and advocate on issues that concern kidney patients. Ambassadors complete advocacy work that is relevant to their specific diseases and communities each month.

If you are interested in learning more about the CDC and how you may be able to become involved, please click here. Change happens when people speak out, share their stories and take action – the CDC is proud to provide a platform for kidney patients and all people with chronic conditions to do so.

*****

Did you click through on all the blue words? I did. I’d had inklings of what each of these meant, but the full explanation made my understanding so much better. All I can say is: Thank you!

SlowItDownCKD 2014 should be out on Amazon.com any day now. B & N takes a few weeks longer. This had formerly been the second half of the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I’d vowed to separate both this book and the equally unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 into two books each… and now I have. Of course, that leaves me with desk copies of each of the Book of Blogs which I no longer need. Want one? Let me know (but only if you haven’t received a free book from SlowItDownCKD before).

Until next week,

Keep living your life!

 

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

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 nearly 50 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.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

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!

Processed Foods: Yea or Nay?

Good morning, world! It’s still March which means it’s still National Kidney Month here in the USA and Women’s History Month. I’m going to take liberties with the ‘history’ part of Women’s History Month just as I did last month with Black History Month. Today we have a guest blog from a woman – Diana Mrozek, RDN – which deals with the kidneys.

You know you’re entitled to a free nutritional appointment yearly after two the first year if you have CKD. Here’s what I wrote about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Most people think of a nutritionist as a luxury even if they do have a chronic disease.  When I pulled out my checkbook to pay my renal dietitian [RD], I was told the government will pay for her services.  That made sense.  Especially in the current economic atmosphere and for older people, the government needs to help pay our medical bills.”

My nephrologist is part of a practice which rotates their nutritionists. It’s a pretty good idea since I get different points of view about my renal diet from dietitians who each have my records at hand. Your renal diet is tweaked according to your latest labs, so having your records in front of them is important to you and your nutritionist.

Notice I was writing about a RD and Diana is a RDN. The only difference between the two is that Registered Dieticians need not also be Nutritionists, but an RDN is both a Dietician and a Nutritionist.

Let’s take a look at Diana’s unique take on processed foods now.

Processed Food, Chronic Kidney Disease and Your Health

What foods come to mind when you hear the words “processed food”? Is it potato chips? Fast food? Margarine? Or maybe bread? Olive oil? Milk? Do you think artificial? Unhealthy? Safe? Convenient? Cheap?

If any of these words or foods came to mind, you are correct! Let’s clarify. Processed is a term that applies to a wide range of foods as by definition they are any food that has been altered from its natural state usually for either safety or convenience. Many foods need to be processed to make them suitable for eating, for example extracting oil from seeds and pasteurizing milk to make it safe to drink.

Processed foods can have many benefits like convenient and safe food storage as well as better retention of nutrient content. For example, flash frozen fruits and vegetables may have higher vitamin and mineral content than fresh or canned. They also provide more choice, less waste, less cost and can reduce food preparation and cooking time. Processed foods can be helpful for people who have difficulty cooking, like the elderly or disabled.

Over the past several years, many working in the nutrition industry have become very critical of processed foods, and their widespread use in our diet has been blamed for everything from obesity to cancer. However, other than fresh produce straight from the fields, you would have a hard time finding many unprocessed foods in your local grocery store. Most store-bought foods have been processed in some way including freezing, canning, baking, drying, irradiating and pasteurizing. Processed foods are here to stay, but making informed choices when grocery shopping will allow them to be part of a healthy, balanced diet.

The problem with some of today’s processed foods are the amounts of salt, sugar and fat that are often added to enhance taste, extend shelf life and retain moisture, texture, etc. Because we rely heavily on processed foods, we may be eating more salt, sugar and fat than we need. This is important for people with kidney disease who need to watch salt intake for blood pressure control. Kidney patients who also have diabetes need to limit sugar intake as well. Since both diabetes and kidney disease increase the risk of heart disease, fat intake is another concern.

So how do you select healthier processed foods?

In general, you want to choose products with less fat and sodium, more fiber and the least added sugar. The best way to do this is to read the Nutrition Facts Label and stick to eating one serving of packaged foods. Use the following guidelines when looking at different nutrients and ingredients on the nutrition labels to make better choices:

Trans Fats – Look for 0 grams. Trans fats are hidden in many fried and baked foods like biscuits, cookies, crackers as well as frozen foods. They increase levels of bad cholesterol (LDL) and decrease good cholesterol (HDL).  If you see shortening or partially hydrogenated oils in the ingredient list, it has trans fat. Remember…Trans fat? Put it back!

Saturated fat – For most people, intake of saturated fat should be around 13-18 grams per day.

Sodium – Sodium intake should be less than 2300 milligrams (mg) per day or 700-800 mg per meal. Look for “no salt added” canned items or items with preferably less than 200 mg per serving. Limit use of boxed side dishes with seasoning packets as well as high sodium condiments like soy sauce, barbeque sauce and bottled dressing and marinades.

Sugar – Sugars are a bit trickier. Instead of grams, check ingredient lists for sugars like corn sweetener and high fructose corn syrup, and words ending in -ose, like dextrose or maltose. If a sugar ingredient is one of the first three ingredients in the list or if there are more than 2-3 different types of sugars, it likely has a lot of added sugar.

Fiber – Look for at least 3 grams of fiber per serving for cereal, bread and crackers. Also, look for the word “whole” before grains, like whole wheat. If it says enriched, it’s likely had the fiber removed during processing.

By spending a few extra minutes of your shopping time taking a closer look at the groceries you are buying, you can limit less healthy additives and still enjoy all the benefits of processed foods!

While I agree with Diana now that she’s brought up processed foods, remember your labs will dictate your renal diet.

I almost forgot to tell you: in Honor of World Kidney Day. which was March 9th, SlowItDownCKD 2016 is now available in print on Amazon.com!!!!!

Until next week,

Keep living your life!

A Change is Gonna Come… Or is It?

This has been a confusing week here in the United States. You see, we have a new president-elect. I’m not going to deal with politics in today’s blog, but rather some of the fears we have concerning our health care under this new president. We are Chronic Kidney Disease patients and we have heard so many conflicting rumors.

Let’s start off with a little reassurance in this confusing time. CBS’s Lesley Stahl interviewed President-elect Donald Trump on 60 Minutes yesterday.

youtubeFor those of us who might need some background, CBS is the Columbia Broadcasting System which, of course (It is 2016, after all.), now includes videos as well as live television. You can also find them on YouTube via the specific show’s title. You can hear parts of the interview I wrote about at  https://www.youtube.com/watch?v=_XSo0cH7X1E&t=43s.

According to IMDb (which describes itself as “…the world’s most popular and authoritative source for movie, TV and celebrity content….”) 60 Minutes is:

The oldest and most-watched newsmagazine (sic) on television gets the real story on America’s most prevalent issues. CBS News correspondents contribute segments to each hour long episode…..” 60-minutes

And who is Lesley Stahl?  Bio.com at http://www.biography.com/people/lesley-stahl-20871751 tells us, “Lesley Stahl is an award-winning television journalist. She’s served as co-editor of 60 Minutes and anchored the news program 48 Hours Investigates.” 

These are not my usual sources, nor is this my usual sort of blog. However, it’s the necessary blog today.

Following is the segment of her interview with the president-elect about Obamacare which you may know as the Affordable Care Act (ACA).

“Lesley Stahl: Let me ask you about Obamacare, 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.

lesley-stahlStahl: You’re going to keep that?

Trump: Also, with the children living with their parents for an extended period, we’re gonna–

Stahl: You’re gonna keep that–

Trump: Very much try and keep that. Adds cost, but it’s very much something we’re going to try and keep.

Stahl: And there’s going to be a period if you repeal it and before you replace it, when millions of people could lose -– no?

Trump: No, we’re going to do it simultaneously. It’ll be just fine. We’re not going to have, like, a two-day period and we’re not going to have a two-year period where there’s nothing. It will be repealed and replaced. And we’ll know. And it’ll be great healthcare for much less money. So it’ll be better healthcare, much better, for less money. Not a bad combination.”

Is he definitive? Is he absolute? No, but what makes this hopeful is that during his campaign he announced, “On day one of the Trump Administration, we will ask Congress to immediately deliver a full repeal of Obamacare.” Thank you to Trump’s campaign website at https://www.donaldjtrump.com/positions/healthcare-reform  for this quote. We can see the softening of that position in the 60 Minutes interview.

IMG_2979

We have pre-existing conditions. We cannot abide with a presidency that doesn’t support healthcare which allows for this. I did say this would be a non-political blog, so no more adamancy from me… if I can help it.

What does the president-elect say about Medicare? Most 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.

Here’s what Trump had to say about Medicare in a rally in Iowa on December 11th of last year:

“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….”download

A little clarification is in order. According to their website at Medicare.gov, “Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant, sometimes called ESRD).” Then there’s Medicaid. “Medicaid is a joint federal and state program that helps with medical costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, like nursing home care and personal care services,” according to their website at Medicare.gov.

But then I found the following in a Forbes article by Janet Novack on 11/10/16 at http://www.forbes.com/sites/janetnovack/2016/11/10/will-president-trump-cut-medicare-and-social-security-as-well-as-taxes/#7115535a43f1

“… two big spending cuts Trump has endorsed— a House Republican plan to cut Medicaid spending by $500 billion over a decade by turning it into a capped “block grant” payment to the states and the “penny a year” plan, which requires that all non-defense, discretionary spending be cut 1% a forbesyear in nominal terms, saving $750 billion over a decade (without, conveniently, spelling out which programs would get chopped).”

I admit it. I am in over my head. Does this mean that while Medicare will pay if you have ESRD, you still may be on the hook for personal care services IF Trump’s capped block grant payment to states comes into being? Does it mean dialysis will be covered, but possibly not a nursing home stay necessitated by something secondary to your dialysis?

I don’t have ESRD, but Medicare (and my secondary insurance) covers my labs and nephrologist’s appointments. Let’s say the cap goes through, I have a UTI – heaven forbid – that causes me to need a nurse (I know, I’m stretching the issue.), but my income has gone way down. Will Medicaid be available?

While I meant to write a reassuring blog today, I think I’ve raised more issues to question instead. I am not a politician, nor am I politically savvy. BUT, I am a Chronic Kidney Disease patient who needs some kind of reassurance that I won’t be left without the coverage I need.stages of CKD

Hey, that’s another thing: whatever happened to Trump’s campaign promise about letting us order less expensive medications from other countries? Did I miss the update on that one?

Until next week,

Keep living your life!

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!

Aha! It is Possible.

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

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

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

Scan0003

(Seems I see things off kilter. Scan0002

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_1398

Until next week,

Keep living your life!

 

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!

Never Heard of It

Before I write about what I never heard of, let me tell you what I have heard of: The National Kidney Foundation of Arizona Kidney Walk this Kidney Arizonacoming Sunday. Our t-shirts are ready, the banner is on the way, and all we need is you!  Pre-register for Team SlowItDownCKD at kidneywalk.kintera.org or just show up at Chase Stadium to register at 8:00 a.m.  Religious?  No problem; services will be held at the walk if you’d like to attend them.

So what have I never heard of?  The NutrEval (FMV Amino Acids) with Nutrient & Toxic Elements. This is a test my pre-diabetes counselor ordered for me. It consists of a blood drawer and a first void urine sample.

That in itself is interesting.  If you remember, when you have a 24 hour urine test for Chronic Kidney Disease, the first void is not used since this urine has been accumulating in your bladder the whole time you’ve been sleeping.  Apparently, this same accumulated urine is important for this urine containertesting.

You and I are exploring this together today. I hadn’t seen the blood drawer orders yet when I was walked into the lab directly from the counselor’s office.  Luckily, Jody Navarro, the tech on duty that day at this Sonora Quest Lab., pointed out that lipids were being tested  – which meant fasting.  I’d already eaten breakfast and lunch.

With a little mental rearranging, I saw I could just come back the next day.  Then Jody emphasized that I needed to bring the first urine void with me. Surprising, I thought.

The next day, back to the lab I went – although I knew the specimens would be sent out to Genova Diagnostics for the actual testing – with my refrigerated urine sample.  I tend to get up early and knew I wasn’t going to eat within half an hour of waking since this was a fasting test, so I wasn’t hurrying anywhere. Hence, the refrigeration.

Both Jody and Abigail Grimwade, who made the actual blood draw practically painlessly, greeted me and gave me copies of everything I asked for, which was everything.  I’m serious about understanding my health.

Okay, let’s backtrack a bit here. According to Genova Diagnostics’ website at https://www.gdx.net/product/nutreval-fm-nutritional-test-blood-urine, this is what the tests cover:

Metabolic Analysis assessment provides information on 45 key organic acids. These biomarkers are grouped into easy-to-understand categories, and provide insight for functional support in the areas of: malabsorption & dysbiosis; cellular energy & mitochondrial metabolism; neurotransmitter metabolism; vitamin deficiencies; and toxin exposure & detoxification need.protein

Amino Acids analysis features either plasma (37 total) or urine (41 total) amino acids. This assesses nutritionally essential and non-essential amino acids, as well as intermediary metabolites that augment an understanding of B vitamin need, and need for support of protein digestion & absorption.

Essential and Metabolic Fatty Acids Analysis provides a high level overview of the balance of various families of fatty acids in relation to each other: Omega 3, 6 and 9 Fatty Acids; Saturated Fatty Acids; and Monounsaturated Omega 7 and Trans Fats. It also provides key ratios for understanding cardiovascular risk, including the Omega 3 Index.

Elemental Profiles provide information in two categories: Nutrient Elements which evaluates intracellular nutrient status, and Toxic Elements which evaluate short-term toxic element exposure.

Oxidative Stress biomarkers highlight the body’s current state of oxidative stress and reserve capacity. Markers of oxidative injury assess cell membrane (lipid peroxides) and DNA (8-hydroxydeguanosine/8-OHdG) damage, while direct measurement of glutathione and CoQ10 provide insight into antioxidant reserve available to counter free-radical impact. Additional markers are available in our Oxidative Stress 2.0 profile.

Why did we need to know all this? Well, it seems that chronic disease – as in Chronic Kidney Disease – can be caused by nutritional deficiencies… and these tests could find them.  I know my pre-diabetes counselor’s eyes were lit up like the statue of Liberty at night when NYCshe realized she could order this testing for me.

Some of my readers have mentioned that this is state of the art testing that isn’t readily available and that they didn’t know Medicare would pay for this.  Looks like I lucked into this by simply choosing the counselor I did.

I would urge anyone with pre-diabetes to get this kind of nutritional counseling if your insurance covers it.  I have a far better understanding of how my blood glucose works now and what I can do to control it… and then there’s this testing to see what can be done about my chronic health problems.

What I found especially interesting is that the Creatinine, Urine (a CKD marker and stager) is present in this testing. I also noticed Potassium on the list of what’s tested for both deficiencies and toxicities. I am eager to receive my results and have them explained in detail, but that could take up to 14 days total, which means I need to wait for possibly 10 days.

Every time I research the test, I’m directed to Genova Diagnostics or a lab that sends the specimens to them.  While this test formerly cost thousands, the price seems to have come to the high hundreds in recent times. In attempting to plot the history of the test, I drew blank after blank.  This is considered pioneer bio testing.Genova

Maybe the best thing to do here is wait for my results and then explain them to you, so you may see if they have any relevance to your own health.

I was curious about first void urine being tested and speculated that it might be more concentrated. Medical Technology Avenue at http://medicaltechnologyavenue.blogspot.com/2008/12/first-morning-specimen.html confirmed my speculations.

The first morning urine is the ideal screening specimen because it is more concentrated than the random specimen.Part 2Book CoverDigital Cover Part 1

You’ll definitely see another blog about this once I review my test results.  Meanwhile, read my books!  Buy them on Amazon, borrow them, ask your library to order them if you don’t know anyone who has them (What!) and don’t have the money to buy them, but read them… and then write reviews.  The idea is to spread this info.  We all know I’m not going to get rich here, but I would like to see the information out there.

Until next week,

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.

I Can Hear The Blood Rushing in My Ears

July 4thHope you had a wonderful Independence Day weekend. Ours was filled with water walking thanks to the Vlasitys, Olsens, and Artecs who all offered their pools for Bear’s physical therapy, board games after we discovered our neighbors – Linda and Mike Olsen – played our favorite domino game, a movie (Train Your Dragon, Two… oh yes!), plus dinner out at Macaroni Grill, a restaurant where I actually have choices that fit in the renal diet. We even got to the only remaining bookstore on our side of The Valley of The Sun. Quiet, fun activities.

During that time, my blog was in the back of my mind. It’s always in the back of my mind. Which is why I can’t stop writing it, by the way. This weekend, I kept thinking about the subtle connection between hearing and Chronic Kidney Disease.

The topic came about in the usual way: I complained of hearing poorly and my ever vigilant primary care doctor, Dr. Zhao of Deer Valley Family Practice right around the Arizona style corner (three and a half miles), suggested I might want to have my hearing tested by an audiologist. This was right after I passed the Medicare Annual Wellness Visit hearing test with flying colors despite my complaints.

Off I went to Dr. Kristin Wells of North Valley Audiology… for the third time in five years. Her assessment was that my hearing was just fine. Go figure, but she did applaud me for telling her I had CKD (and sleep apnea, but that’s another story…uh, blog).test

Why did I do that you ask? Well, as I wrote on my March 15th, 2011, blog during National Kidney Month:

“Research shows that hearing loss is common in people with moderate chronic kidney disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate chronic kidney disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

You can enter hearing in the topic search to the right of this blog read the rest of that blog.

earHow moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found at http://www.hear-it.org/More-than-half-with-Chronic-Kidney-Disease-have-hearing-loss – which has an online hearing test – and not most, but all of the other sites I searched. This comes from the same study I used in my 2011 blog. That study was completed in 2010… four years ago.

“University of Sydney, said:
The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”cochlear tissue

I couldn’t visual this inner ear tissue, so I started looking for images. You can see them all over this page.

Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary at http://www.etymonline.com/index.php?term=toxic tells us the word toxic is derived directly from Late Latin toxicus “poisoned.”

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

ear tissueAccording to WebMD at http://www.webmd.com/a-to-z-guides/hearing-loss-causes-symptoms-treatment “Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.” Of course!

I went right to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to figure out how. On page 97 (you know the drill: digital readers use the search function), blood pressure 300dpi jpgthere is a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes.

This is the sentence that clarified the issue for me (page 99): “Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.” That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.

I had been hoping for more recent research, but sometimes you just have to deal with what you get.

Talking about getting, Dr. Nick Held of ASU sent a long involved comment. Basically it is full of opportunities to study about Chronic Kidney Disease. While most of it is a bit too medical for me, you may be looking for just this opportunity, so here’s the address: http://www.nejm.org/toc/nejm/medical-journal. You’re looking for Vol. 371, No. 1. Many thanks, Nick, and thank you for the accolades, too.

Things are quiet here this summer. No word yet from either the radio show or the article in Medicare’s publication about when they’re going to happen. No word on SlowItDown either. I’ll bet people are going directly to DaVita.com for their Chronic Kidney Disease education. You are, aren’t you? Hey, get that CKD education any way you can.

The book lives! I do believe there may be another book about CKD fairly soon: The Book of Blogs. This blog was born when an Indian nephrologist contacted me to explain that he Book Coverthought What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was just what his new patients needed, but they were too poor to even pay bus fare to keep their appointments.

I was very new to social media, but figured if I wrote a blog, he translated it and then printed it, his patients who could keep their appointments could read it and bring it back to their villages with them for other CKD patients to read.

Now I’m looking at it the other way: I have more than a few readers who are not comfortable with anything electronic. They need a book in print. I’m seeing what I can do about that, folks.

Until next week,
Keep living your life!

The Nos(e) Have It.

My father had a deviated septum.  My daughter has a deviated septum.  Why don’t I have a deviated septum?  Oh right, I’m the lucky one.  I only have Chronic Kidney Disease… not that the two are mutually exclusive… or that it’s lucky to have CKD.deviatedseptum

When it was my father’s turn, I was too young to know anything except that my dad was gone over night. I didn’t like that. Now I ask my daughter loads of questions. I don’t like that either.

So here I am very ahead of myself and not giving you a clue as to what a deviated septum is.  Septum comes from the Latin saeptum, which means “a fence, enclosure, partition.” (Thank you my old academia friend Etymology Online at http://www.etymologyonline.com/index.php?term=septum.) We still use that word for the dividing membrane in the nose.

Feel the rigid cartilage under the skin on the outside of your nose.  Inside are two chambers separated by the – what else? – septum.  Deviated means exactly what you think it does: turned aside.  Sometimes you can see the results of a deviated or turned aside septum by looking at a person’s nostrils.  If one is large and the other very small, it’s likely they have a deviated septum.nostrils

Sometimes people are born with them, but 80% of the time, they’re caused by accidents of one kind or another, or even growing older.  Sometimes people don’t even know they have a deviated septum.  Sometimes it doesn’t even matter.

sinusesBut when you start to experience frequent sinusitis and nosebleeds, it does start to matter. According to The Mayo Clinic at: http://www.mayoclinic.org/diseases-conditions/deviated- septum/basics/definition /con-20031537

“When a deviated septum is severe, it can block one side of your nose and reduce airflow, causing difficulty breathing. The additional exposure of a deviated septum to the drying effect of airflow through the nose may sometimes contribute to crusting or bleeding in certain individuals.”

Some of the symptoms are: preferring to sleep on one side since that allows the larger nostril to get the most air, noisy breathing, the above mentioned nosebleeds and frequent bouts of sinusitis.  Wait, sinusitis?  According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842

“The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.”

sinus infectionOh, my poor daughter! Frequent nosebleeds, chronic sinusitis, their accompanying post-nasal drip, and headaches.  Oh yes, headaches. As I understand it, fluid (can’t drain properly due to that deviated septum, remember?) builds up in the sinuses and exerts pressure.  Result: headache.

This sounds pretty bad, but there are ways of dealing with a deviated septum.Keep in mind that some people have a mildly deviated septum so they don’t do anything for it. Others are troubled by the deviated septum and use medications such as decongestants, nasal sprays, or antihistamines. But when the symptoms are affecting your life and health, surgery is usually suggested. The following is from MedicineNet at http://www.medicinenet.com/deviated_septum/page2.htm

“If a person has a deviated septum and it causes breathing problems or sleep apnea and snoring, surgery may be recommended to repair the septum. Surgery to fix a deviated septum is called a septoplasty, submucous resection of the septum, or septal reconstruction.”

Did you notice that this surgery is sometimes necessary so that the sleep apnea  – which may be caused by your deviated septum – can be cured?  That’s how it affects us as CKD patients. We already have enough problems without sleep apnea!  Diabetes, cardiovascular illness, mortality may all be connected to a deviated septum as we know from a recent blog that quoted EurekAlert at http://www.eurekalert.org/pub_releases/2014-04/elf-sal040214.php.septo

“Sleep apnoea has been linked with elevated blood sugar levels, suggesting people with the condition could be at an increased risk of cardiovascular illness and mortality.

The findings of a new study, published online today (3 April 2014) in the European Respiratory Journal, add to a growing body of evidence that suggests that sleep apnoea is linked with diabetes.”

sad faceYour medical condition is simply not as, well, simple as you think with CKD. Deviated septum may lead to sleep apnea, which may lead to diabetes, or any of the other outcomes listed above.

Okay, we’re ready to take a look at the surgery now. I found this at http://deviated-septum.net/deviated-septum-symptoms-diagnosis-and-treatment/ via a simple Yahoo search.

“Septoplasty is the surgical treatment which is preferred by doctors worldwide to correct a deviated septum. The surgery is done entirely through the nostrils, thus no external bruising occurs. During the surgery the portion of the septum which are [sic] extremely deviated will be re-adjusted or realigned or removed completely.”

Sometimes people do have a nose job (rhinoplasty) at the same time.  This completely changes the shape of the nose.  But let’s not judge here; maybe the adjustments made to the deviated septum would make the appearance of the finished product unacceptable to the patient.

I wish my daughter and everyone else who needs this procedure well.  She’s got a pretty nose.  I like the idea that she should be able to adequately breathe through it after her surgery… and may be cured of her headaches, sinusitis, nosebleeds, and sleep apnea.SlowItDown business card

News: the Medicare monthly magazine has profiled me for an upcoming issue.  I have no idea when it’ll be out, but I’ll tell you as soon as I know.

I’m wondering why, if my advocacy for Chronic Kidney Disease Awareness is so important that I’m being profiled by newspapers, interviewed on radio shows, and have so many readers for the blog, SlowItDown isn’t getting more calls to bring free ckd education by trained educators into the community.  Suggestions for speeding up SlowItDown (love that juxtaposition), anyone?Book Cover

Thank you all for keeping the book moving out of the stores and into your loved ones’ lives.  After reading about the deviated septum, I donated a copy to the pulmonologist I saw for my own sleep apnea today.

Until next week,

Keep living your life!

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!

 

 

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

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

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

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

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

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

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

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

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

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

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

National Kidney Disease Education Program

www.nkdep.nih.gov

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

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

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

National Kidney Foundation

www.kidney.org

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

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

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

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

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

This is their mission statement:

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

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

And let’s not forget

 Renal Support Network

www.rsnhope.org

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

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

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Did She Say Spaghetti?

new hometo Abby Wegerski on her first singly owned home!  I have enjoyed every second of helping her move, even the shopping. I got most of my exercise doing as much of the grunt work involved in moving in the last few weeks as I could.  While I was a little dismayed to discover it was only a fraction of what I thought I’d be able to do, it was still exercise. Nothing like packing boxes, schlepping (do you know the word?) boxes of flooring, or getting down on the floor to scrub carpet spots for a good workout.  So, Abby got into her new home and I got my exercise.  Sounds like a fair trade to me.

That’s the good; now the bad: Bear’s back is finally demanding his attention after years of being just painful as opposed to being overwhelmingly painful. Pollyanna over here found another way to exploit the situation.  He can’t do many of his chores, so I do them.  Wow, more exercise.  I considered writing about the ‘cocktail’ being injected into his spine in two places, but decided there wasn’t enough connection to Chronic Kidney Disease there. Here’s hoping they help him and my honey is out of pain soon.  I really wouldn’t mind getting my exercise from dancing, the stationery bike, or my walking tapes. Honestly, Bear!

So what will I write about?  I think you already know.  Dr. Wile has sent me the slide show with her wonderful visual analogies of how Chronic Kidney Disease works.  We may have to back up a little. You already know the kidneys do important jobs for your body, like filtering your blood every 30 minutes, “regulating the fluid balance in the body, providing vital hormones, producing erythropoietin (e.g.  this spurs red blood cell production), and producing the renin that regulates blood pressure.” The quote is from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease and the e.g. from the glossary of the same book.Book signing

There have been many attempts to explain how Chronic Kidney Disease impedes the kidneys’ abilities to do these jobs and all the others it is tasked with. The scientific explanation leaves me scratching my head.  Even as a research savvy person, there are too many terms to look up and then try to string the definitions together in some kind of coherent whole. The simplistic versions leave me frustrated that they don’t say much.  I’ve seen visuals that sort of help, but aren’t quite on the mark.

Dr. Wile thought of simply using a colander draining spaghetti as a visual.  Bingo! Even if you haven’t cooked spaghetti yourself, you’ve seen it cooked.  Colanders are common in the households of many different ethnic groups. The holes in the colander are akin to your kidneys’ nephrons. Those are the part of the kidneys that purify and filter the blood.  If a hole in the colander is closed off, or if your nephron is no longer functional, both the colander and your kidneys will not do the best job.  Close off more holes or nephrons and you will have even less filtering.  Hike up that number and the colander and kidneys become less and less effective.  You’ll end up with soggy spaghetti or Chronic Kidney Disease.colander

You can wash your colander for better straining.  You can’t do that to your kidneys. Once a nephron is dead, it’s dead. Sayonara, good bye, adios.  You can’t bring it back to life.  Before you panic, remember you have one million nephrons in each of your two kidneys. The name of the game here is: slow it down, slow down gathering those clogged holes in your colander, slow down the death rate for your nephrons.

I know it sounds like an impossible task but it isn’t. You may have to make life style changes (I am so tired of this hackneyed, but convenient term), such as no longer smoking and cutting down – or out – your drinking. You’ve got a renal diet or, at least, the name of the renal dietician the U.S. government is providing for you.  Call the number and make an appointment.  If you have your renal diet, read it, make certain you understand it, and follow it. What about sleep?  Are you making certain you’re getting enough? And then there’s the ever present exercise.  I say this to myself every, single ()*&*&*O_{{+ day: “Just do it!” Lately there have been studies that indicate stress can exacerbate CKD.  Find new ways to deal with that, ways that work for you.

There’s no one way to do any of the above, but the point is you’ve got to do it.  Sometimes it’s as annoying as… well, whatever is the most annoying thing you can think of, but it is so worth it.  I think one day one of my children may have a child of her own, or my novel will be published, or Bear and I will go to Alaska.  That’s all it takes to stop my moaning and groaning.  I want to be around for each of these possibilities, even though that’s all they are at this point.

This week is the birthday of our country.  I intend to get Bear the bar-b-q food he craves even though I can’t eat it.  Everyone in pain deserves some coddling.  And then we’ll celebrate by hiding in the house with Bella, who is terrified of fireworks, and have a Downton Abbey marathon.  Maybe we can’t do what we once did, but we can enjoy what we can do.  To the United States of America: happy birthday and thank you for paying for our CKD care.IMAG0269 (1)

Until next week,

Keep living your life!

The Less Than Sexy Sinuses

photoHappy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.QPJ8IQXD2omxIGstmJVegwlJJ4zLcZLsR0skZQQxogg

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at http://www.nlm.nih.gov/medlineplus/sinusitis.html,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

sinusesBack to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

“Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.”

You can read more at: http://www.mayoclinic.com/health/acute-sinusitis/DS00170.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

Acute  – extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic  – medication used to treat infection.

Chronic  –  Long term, the opposite of acute.

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

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at: http://www.essortment.com/prevent-sinus-infection-62926.html, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

sinus infectionThis is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

By Request, Ladies and Gentlemen: The Flu (Redux)

We’re back thanks to the ever willing Sean who pitched right in and picked us up from the airport when we realized Abby, who had taken us to the airport, holds a blues dance just about the time we arrived back in Phoenix. Doctors and medical practices in Apollo Beach, Tampa, Mount Dora and Orlando are now proud owners of office copies of the book.

But while we were on the plane both ways, I heard coughing, sneezing, throat clearing and sniffling… lots of it.  Was this the flu?  All my relatives and friends had seemed healthy enough, but they weren’t traveling on these planes.interior of plane

That got me to thinking more about the flu just as it was requested that I re-run the flu blogs. Before doing so, I thought I’d find out more about this season’s flu.  Sure enough, MedPage Today ran just such an article on January 10th of this new year.  According to Todd Neale, who wrote the article, “Last week, the CDC reported that 41 states had widespread influenza activity, and 29 states and New York City had high influenza-like illness activity in the week ending Dec. 29. Although not unprecedented, that level of activity is not usually seen until later in the season.”

Some of the physicians quoted in the article wondered if it’s the reporting of the illness that’s improved thereby making the flu appear more widespread than it really is.  I don’t think I believe that since there seems to be a shortage of both vaccines and drugs to treat this ailment and Boston’s mayor has declared a public health emergency due to the 700 cases reported in his city. You need only click through to http://www.medpagetoday.com/InfectiousDisease/URItheFlu/36801 to read the article for yourself.

According to Healthfinder.gov, you can protect yourself from the flu by doing the following:

Getting the flu vaccine is the most important step in protecting yourself from the flu. Here are some other things you can do to keep from getting and spreading the flu:

  • 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

I wondered how to tell the difference between a cold and the flu.  Since being diagnosed with ckd, I make it a point to take the flu vaccine annually, yet there have been times when I just didn’t feel that well. I found my answer in the following: http://abcnews.go.com/health/t/blogEntry?id=17885194  “ ‘With influenza you might also feel very poorly, with aches and pains in your muscles and joints,’ said Dr. William Schaffner, chair of preventive medicine at Vanderbilt University Medical Center in Nashville, Tenn. ‘There’s often a cough, too, which is much more prolonged and pronounced.’ ”

I’m including part of an article by The National Kidney Foundation so you can feel confidant that your kidneys are being covered here.

Flu Season and Your Kidneys

By Leslie Spry, MD FACP FASN

As flu season approaches, kidney patients need to know what they can do and what they should avoid if they become ill. The first and most important action to take is to get a flu shot. All patients with chronic kidney disease, including those with a kidney transplant should have a flu shot. Transplant patients may not have the nasal mist flu vaccine known as FluMist®. Transplant patients should have the regular injection for their flu vaccine. If you are a new transplant recipient, within the first 6 months, it is advisable to check with your transplant coordinator to make sure your transplant team allows flu shots in the first 6 months after transplant. ALL other kidney patients should receive a flu vaccination.

If the influenza virus is spreading in your community, there are medications that you can take to protect against influenza if you have not been vaccinated, however the dose of these medications may have to be modified for your level of kidney function. This is also true of antibiotics or any medication that you take for colds, bacterial infections or other viral infections. [Me: I have written about this in the book and the blog.  You have to tell the prescribing physician about your CKD and/or remind him of it if (s)he already knows each time a prescription is written for you.] The doses of those medications may have to be modified for your level of kidney function. Even if you are vaccinated, it is still possible to get influenza and pneumonia, but the disease is usually much milder.

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 [me again: remember your limit on fluid intake] 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 you temperature and blood pressure carefully and report concerns to your physician. Any medication you take should be reported to your physician. [Me: I’ve gotten other advice about those brands, so check with your nephrologist before you take anything.]

fit the flu

Medications to avoid include all non-steroidal medications including ibuprofen, Motrin®, Advil®, Aleve®, and naproxen. Acetaminophen (Tylenol® and others) and aspirin are generally safe to take with kidney disease. Acetaminophen doses should not exceed 4000 milligrams per day [Me: Nobody ever told me that! Why?] If you take any of the over-the-counter medications, you should always drink plenty of water and stay well hydrated. If you take anti-histamines or decongestants, you should avoid those that contain ephedrine or pseudoephedrine. Over-the-counter cold remedies that are safe to take for patients with high blood pressure are generally designated “HBP”. Any over-the-counter medication that you take for a cold or flu should be approved by your doctor.

You can find the article at: http://www.kidney.org/patients/FluSeasonAndYourKidneys.cfm.  Again, although this a nationally respected doctor, it is not your doctor.  Check everything you plan to take with your nephrologist BEFORE you take it. By the way, Medicare covers the cost of the flu shot.

Here is some of the information England’s Department of Health offered in 2011 :

Seasonal flu vaccination: Who should have it and why

What harm can seasonal flu do?

People sometimes think a bad cold is flu, but having flu can be much worse than a cold and you may need to stay in bed for a few days if you have flu. Some people are more susceptible to the effects of seasonal flu. For them it can increase the risk of developing more serious illnesses such as bronchitis and pneumonia, or can make existing conditions worse. In the worst cases, seasonal flu can result in a stay in hospital, or even death.

Am I at greater risk from the effects of seasonal flu?

Even if you feel healthy, you should definitely consider having the free [me: in England, that is] seasonal flu vaccination if you have:

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

Here’s the URL for this article: http://www.dh.gov.uk/health/2011/10/winter-flu/       Book Cover

This is an usually long blog.  That was necessary for you to understand that you can die from influenza… or you can take preventative measures. I don’t want to scare you and need to remind you that “can” doesn’t mean “will.”

Until next week when I’ll try to remember to tell you about Harry Potter’s World,

Keep living your life!

Be Inspired

Wow!  Both Mother’s Day and Mother’s Day have slipped by.  I hope all of you had a wonderful time with your mother, father, chosen mother, chosen father, surrogate mother, surrogate father and/or whoever fills the role for you. I hope you had laughter, tears, hugs and kisses – or, at least, a really firm handshake for those who are not demonstrative.

Please be aware that if one of your biological parents has CKD, you are at higher risk for the disease. AND if you are the biological parent, so are your children.

That made me so angry when it was explained to me. Of course, I had no clue why I was angry – but it is said that anger is the flip side of sadness. I have children.

Hmmm, have you considered giving a copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to either your parent or your child as a late Mother’s or Father’s Day gift?  What about as a graduation gift to the aspiring medical student? Now that’s inspiration.

Wait!  I have to repeat this: Dr. Jamal Atalla is such a gentleman that he said nothing when I misspelled his name in last week’s blog.  My apologies and thank you for your kindness in not mentioning it, Jamal. I was actually meeting with Tamara Jensen from AKDHC when I realized I’d misspelled his name and stopped mid-sentence to make a mental note to mention this in the blog.

Many people choose to share a meal out to celebrate holidays.  Bear’s daughters, Lara and Kelly, and Kellly’s significant other – Sean – took us to Cracker Barrel for breakfast to celebrate.  [I noticed the bracelet part of medical alert bracelets being sold as interchangeable watch bands  at the cashier’s counter. Apparently, they are the same things.  A little too fancy for my taste, but worth checking out.] My daughters, Nima and Abby, were in New York having lunch out  with their father.

And, yes, I was able to find something on the menu that fit the renal diet I follow.  Naturally, I did get those “Are you sure?” questions from the friendly waiter when I asked there be no butter, syrup, sweetened fruit, or powdered sugar on top of my made-from-scratch French toast and just black coffee and water with lemon but no ice.  I’m used to my diet now and thoroughly enjoyed it as much as the others enjoyed their bacon, sausage, and whatever else they had. Have I inspired you to eat out safely for your CKD?

Some readers were surprised to discover that I’d seen my nutritionist not once, but twice. My nephrology center, AKDHC, includes a yearly consultation with a nutritionist.  Now that I’m older and on Medicare, I decided to see what they cover.  Surprise!  Three visits, the first year and two every year thereafter.  This is from their website. 

 

Medical Nutrition Therapy

How often is it covered?

Medicare covers medical nutrition therapy services prescribed by a doctor for people with diabetes or kidney disease. This benefit includes:

  • An initial assessment of nutrition and lifestyle assessment
  • Nutrition counseling
  • Information regarding managing lifestyle factors that affect diet
  • Follow-up visits to monitor progress managing diet

Medicare covers 3 hours of one-on-one counseling services the first year, and 2 hours each year after that. If your condition, treatment, or diagnosis changes, you may be able to get more hours of treatment with a doctor’s referral. A doctor must prescribe these services and renew their referral yearly if you need treatment into another calendar year. These services can be given by a registered dietitian or Medicare-approved nutrition professional.

This is the address at which you can find the rest of this article and others that may be of interest to you.  http://www.medicare.gov/navigation/manage-your-health/preventive-services/medical-nutrition-therapy.aspx?AspxAutoDetectCookieSupport=1  Hopefully, this has inspired you to call your nephrologist for a visit with the practice’s nutritionist.

Let’s move from using renal nutrition therapy to stave off End Stage Renal Disease to alternatives should you reach stage 5.  What if you’re among the 20% of CKDers who aren’t able to stabilize at stage 3 and need to go on to dialysis?

This article from the University of Washington caught my eye a couple of months ago. Frankly, I had trouble believing this was even possible. It just sounded too much like science fiction. After pondering and pondering, I’m now convinced it is more science than fiction. I’d be interested to hear your opinion.

Wearable artificial kidney to be tested for safety and effectiveness in collaboration with FDA

By Leila Gray and Linda Sellers

UW Health Sciences/UW Medicine and Northwest Kidney Centers

A wearable artificial kidney, designed as a new treatment for kidney failure, will be tested in Seattle. The trial will be done in collaboration with the Food and Drug Administration under a new Innovations Pathway announced Monday.

The battery-powered wearable artificial kidney in its current form weighs about 10 pounds and is worn in a belt around the waist. Dr. Victor Gura, an associate clinical professor at the David Geffen School of Medicine, University of California, Los Angeles, invented the device. His goal is to free end-stage kidney disease patients from being tethered for several hours for three or more days a week to a dialysis machine. The hope is to improve the quality of life of these patients.

Researchers will be testing a wearable device that takes over the blood-cleaning functions of the kidneys…. The Wearable Artificial Kidney is being developed by Blood Purification Technologies Inc. based in Beverly Hills, Calif..

“Quality of life issues will likely be embedded in the trial design,” Himmelfarb said. “We’ll probably be asking patients, ‘Can you move with ease? How do you feel? How does the device or the treatment affect your daily life? Can you go to work with it on or go out with your family and friends?’ We will be looking at key health outcomes as well as health economics.”

“At present, if you want to attend your cousin’s wedding in New York City, you need to check to be sure time slots are available at a center for you to get your dialysis done. You can’t just walk in,” he said. “If you live in a rural area, you probably drive a long distance every week for your dialysis sessions. A safe, effective, wearable artificial kidney would give end-stage kidney disease patients much more freedom in their lives.”

You can find the entire article at: http://www.washington.edu/news/articles/wearable-artificial-kidney-to-be-tested-for-safety-and-effectiveness-in-collaboration-with-fda

So we’ve gone from renal nutritional therapy to external artificial kidneys in just one blog.  I am so inspired to realize just how much is available to us.

Nathaniel Smalley, former East Coast Swing venue owner and now professional photographer, has initiated a Facebook page for nature and wildlife photography (https://www.facebook.com/#!/groups/NaturePhotographyWildlifePhotography/permalink/321242084623998/?notif_t=like). The professionals there (I’m one of the non-professionals) called this photograph inspiring, so look at it and realize Chronic Kidney Disease is not necessarily a death sentence. 

Until next week,

Keep living your life!

Yes! Yes! Yes!

I read this New York Times article and jumped up exclaiming, “He understands! He really understands!”  The he to whom I referred is Dr. Joseph Vassalotti of Mount Sinai Medical Center and private practice in New York. He also just happens to be chief medical oficer of the National Kidney Foundation.

If you read this blog, you know I wrote “What Is It And How Did I Get It? Early Stage Chronic Kidney Disease” because I didn’t want anyone else to be in the position I’d been in: newly diagnosed, scared, not taking in what my nephrologist was telling me and not knowing that I could take a more active part in maintaining my kidney function nor how to do that.  Dr. Vassalotti realized how new patients react to the information their doctors give them by simply asking a patient what he had heard.  All the patient heard was the diagnose. But I’ll let you read about this yourselves:

 

Doctors sharpen message on kidney disease

By JANE E. BRODY

Twenty-six million Americans have chronic kidney disease, and avoiding complications depends heavily on how well patients care for themselves.

A patient with early stage kidney disease provided a recent wake-up call for Dr. Joseph Vassalotti, a leading kidney specialist. After explaining the diagnosis in great detail, the doctor asked his patient to repeat what he had heard in his own words.

With a rather bored look on his face, the man said, “Kidney disease, yada yada yada yada.”

Vassalotti, a nephrologist at Mount Sinai Medical Center in New York and chief medical officer of the National Kidney Foundation, was stunned. It was hardly the first time he had explained kidney disease to one of his patients, and he thought he knew how to help them recognize its seriousness and to motivate them to do what they could to forestall the day when their kidneys failed and dialysis or a transplant would be the only option for survival.

“I learned a lot from this patient,” Vassalotti told me. “Clearly my explanation was not pitched correctly to fit his level of understanding and his attitude toward his health.”

Twenty-six million Americans have chronic kidney disease, which has a number of causes — most often diabetes and high blood pressure. As the kidneys begin to fail, the body’s waste products build up in the bloodstream, leading to anemia, nerve damage, heart disease and other ailments.

As with heart disease and diabetes, avoiding these complications depends heavily on how well patients care for themselves. But the disease is symptomless, at least in the early stages, and many patients fail to appreciate that they are gradually heading toward a precipice.

The medical profession has been trying harder in recent years to communicate better with patients, but clearly there are serious impediments. Doctors are grappling with shortage of time and lack of training on how best to get needed information and advice across in terms that patients can hear and understand.

Too often, doctors speak in medicalese, a foreign language to their patients. Or they may be reluctant to place all the cards on the table, concerned that patients may become so fearful they fail to hear important information. Unlike Vassalotti, some doctors never ask patients what they understood.

Medicare now reimburses for educating patients with relatively advanced kidney disease, but not for those in the early stages.

MANY CARELESS PATIENTS

Communication is a two-way street, however, and patients with chronic kidney disease also are contributing to its failure in several ways. Many lack health literacy. Unable to understand even simplified medical terms, they may misinterpret what a doctor tells them or forget it entirely.

They may be too intimidated to ask questions or request a clarification. They may regard all medical matters to be the doctor’s purview. Or they may be fatalists who assume whatever will be, will be.

What kidney patients do, and don’t do, can make a huge difference in the quality and length of their lives. Whether they follow through on medical advice depends heavily on what they know about their disease and  what can make matters better or worse, Vassalotti said in an interview.

In a study published in March in The American Journal of Kidney Disease, a research team at Vanderbilt University Medical Center in Nashville uncovered serious knowledge gaps among 401 patients with various stages of the disease.

The team, headed by Dr. Kerri L. Cavanaugh, a nephrologist, pointed out that within the general population, most people with kidney disease don’t know they have it. And among those who do know, a previous study of 676 patients with moderate to advanced kidney disease had found that more than a third knew little or nothing about it and nearly half knew nothing about treatment options should their kidneys fail completely.

Participants in the Vanderbilt study were being treated at the university’s nephrology clinic for chronic kidney disease. They ranged in age from 46 to 68; 53 percent were men, 83 percent were white and 94 percent had completed high school or higher. More than half had seen a nephrologist at least three times in the past year, and 17 percent had attended a kidney education session.

When asked whether they had chronic kidney disease, however, more than a third answered “no.” The 28-question survey revealed that only about 1 in 5 knew that protein in the urine was a sign of poor kidney function and that kidney disease often progresses without causing any symptoms.

Only 2 in 5 knew that controlling blood sugar is important in kidney disease, although more than 90 percent knew it is important to control blood pressure.

The usual lack of symptoms as kidney disease progresses is especially critical for patients to understand, because many fail to seek medical care or follow medical recommendations when they feel well.

Dr. Julie Anne Wright, an author of the Vanderbilt study, said that it “highlights the need for providers to ensure that communication is not only delivered but understood by all parties involved.”

LIFE-ENHANCING FACTS

Here is what everyone with chronic kidney disease and those at increased risk of developing it should know.

• 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. Members of certain ethnic groups are also at higher than average risk: blacks, Hispanics, Pacific Islanders and Native Americans.

• Two simple, relatively inexpensive tests, easily done during a routine doctor visit, can detect declining kidney function: a blood test called eGFR (for estimated glomerular filtration rate, a measure of kidney function) and urine albumin, which shows whether the kidneys are spilling protein.

• Early detection can delay progression to kidney failure, when dialysis or transplant is the only option. Good control of blood sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function. Not smoking and getting regular physical activity and sleep are also important.

• Certain drugs and dyes are toxic to the kidneys and should be avoided by people with kidney disease. The drugs include painkillers like acetaminophen, aspirin and ibuprofen; laxatives and antacids that contain magnesium and aluminum (Mylanta and Milk of Magnesia); ulcer drugs like Tagamet and Zantac; decongestants like Sudafed; enemas that contain phosphorus (Fleet); and Alka-Seltzer, which is high in salt. Contrast dyes used for certain tests, like angiograms and some MRIs, can
also be harmful to kidney patients.

• When kidney disease progresses, patients can develop symptoms like changes in urination; swelling in the legs, ankles, feet, hands or face; fatigue; skin rashes and itching; a metallic taste in the mouth; nausea and vomiting; shortness of breath; feeling cold even when it is warm; dizziness and trouble concentrating; and back or leg pain. If any of these occur, they should be brought to a doctor’s attention without delay.

You can read the article for yourselves at: http://topics.nytimes.com/topics/reference/timestopics/people/b/jane_e_brody/index.html?inline=nyt-per
I immediately e-mailed Dr. Vassalotti and Ms. Brody to thank them for making this common knowledge.  I only wish there was enough money in my bank account to get a copy of the book into every newly diagnosed chrnic kidney disease patient.
 
Until next week,
 
Keep living your life!

 
 
 

Medicare Agrees

On June 28th, I posted an article about the new realization that kidney patients were being over-medicated with synthetic iron when dealing with their anemia problems.  I explained that this option (the synthetic iron, not the then as yet unrecognized over- medicating) had been suggested to me several times, but due to my abhorence of yet another set of needles –  it is administered intravenously – I decided to pass on the treatment and deal with the anemia via daily rest periods.

Apparently, this is an issue of great interest currently.  Medscape just posted a Reuters Health Information article dealing with this issue in dialysis patients.  While we are not yet dialysis patients, supposedly we will be eventually.  In the meanwhile, I urge you to think twice and research three times should your nephrologist suggest synthetic iron treatments for you.

From Reuters Health Information

Medicare Proposes Change in Anemia Drug Usage

by Deena Beasley

 

LOS ANGELES (Reuters) Jul 04 – The Medicare federal health insurance program has proposed removing its requirement
that kidney dialysis providers keep patient hemoglobin levels above a set minimum, which could lead to lower use of Epogen, the anemia drug sold by Amgen.

The government health plan said last month that it had no plans to change its reimbursement terms for anemia drugs used
to treat kidney patients.

But in a statement on its website on Friday, the agency proposed retiring a requirement that patients’ hemoglobin, or red
blood cell, levels be kept above 10 milligrams per deciliter.

It said such an action would be “consistent with revised U.S. Food and Drug Administration guidelines.”

Last week, the FDA changed the labels for Amgen’s Epogen and Johnson and Johnson’s Procrit to call for lower dosing of
the anemia drugs, which have been linked in recent years to safety concerns such as increased risk of heart problems.

“Clinicians should use the lowest dose of ESA (erythropoiesis stimulating agent) sufficient to reduce the need for red
blood cell transfusions,” Patrick Conway, chief medical officer at the Centers for Medicare and Medicaid (CMS) said in the statement.

Amgen said it recognizes that the labeling for ESAs has changed, but it is concerned that the proposal would remove an
important safeguard designed to protect dialysis patients from being undertreated.

The Medicare guidelines “should have a measure that protects patients from hemoglobin levels that fall too low,” the
biotechnology company said in an emailed statement.

Sales of the anemia drugs have declined steeply in recent years, but Amgen’s Epogen, along with its second-generation
drug Aranesp, and J&J’s Procrit are still expected to generate around $6 billion in 2011 sales, according to data from Thomson Reuters Pharma.

The proposed change would apply under Medicare’s quality performance standards for “bundled” payments to dialysis
providers and would affect payment years 2013 and 2014, the agency said.

CMS projected that its payment rates for dialysis treatments would increase by 1.8 percent in 2012, representing
projected inflation of 3 percent less a projected productivity adjustment of 1.2 percent. It also estimated that federal payments to dialysis facilities in 2012 would total $8.3 billion.

While Medicare traditionally covers just elderly and disabled Americans, kidney disease patients are an exception. The
program covers all those with end stage renal disease under a decades-old law.

Medicare said it would accept comments on the proposed rule until the end of August and will respond to them in a
final rule to be issued by November 1.

The posting may be found at:    http://www.medscape.com/viewarticle/745743?src=nl_topicI want to remind you that I am not a dialysis patient, simply an early stage chronic kidney disease sufferer yet epogen intravenously twice a month was recommended for me.  I made my decision about this for my own reasons, but only after I explored the option.  Should it be recommended to you, you need to do the same.  Our nephrologists try to keep us in as good kidney health as possible, try to keep us informed, and try to keep us up on the latest findings, but you are the one in charge.

 
Mulling that over as you enjoy your weekend might be a good idea.
 
Until Friday,
Keep living your life!
 
 
 

 

On

 
Published in: on July 8, 2011 at 9:28 am  Leave a Comment  

The Other Clearinghouse

Kidney and Urologic Diseases Clearinghouse

a service of the NIDDK

We all know about the Publishers’ Clearinghouse and how we can win prizes from it (or can we?).  The National Kidney and Urologic Diseases Information Clearinghouse is much more important to us as Chronic Kidney Disease patients, although it doesn’t seem to be something a lot of us are informed about.  So today, I’m going to introduce you to each other via their Winter 2011 Kidney Disease Research Update. Reader, meet NKUDIC.  NKUDIC, meet Reader.  Get to know each other.

Kidney Disease Research Updates
Winter 2011

Report Calls for Increased Coordination of Federal CKD Prevention and Treatment Efforts

Federal CKD Matrix diagram showing federal agencies involved in CKD activities. The six-sided, wheel-like diagram clusters agencies according to function. Listed under 'Surveillance' is CDC, CMS, DoD, HRSA, HIS, NIDDK, and VA. Listed under 'Professional Education and Outreach' is CDC, CMS, DoD, HRSA, HIS, NIDDK, and VA. Under 'Delivery and Payment of CKD Care' is CMS, DoD, HRSA, HIS, NIDDK, and VA. Listed under 'Scientific Research' is CDC, FDA, HRSA, NIDDK, and VA. Listed under 'Quality Improvement/Evidence of Therapy' is VA, IHS, HRSA, DoD CMS, CDC, and AHRQ. Listed under 'Public Education and Outreach' is VA, NIDDK, IHS, HRSA, DoD, and CMS.

Increased coordination of federal health efforts would vastly improve chronic kidney disease (CKD) prevention and care, according to a recent report from the National Kidney Disease Education Program (NKDEP), part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

“Current Federal efforts span a range of missions, including surveillance, professional, and patient education, outreach to high-risk populations, quality improvement, and delivery of, as well as payment for, CKD treatment,” wrote NKDEP Director Andrew S. Narva, M.D., F.A.C.P., and co-authors in the May 2010 issue of Advances in Chronic Kidney Disease. “However, Federal agencies do not function as a comprehensive system or, indeed, as a system at all.”

Medicare spends more than $49 billion annually to care for patients with kidney disease. The NIDDK, together with other National Institutes of Health Institutes and centers, currently funds a $523 million kidney disease research portfolio. Other federal organizations, including the Centers for Disease Control and Prevention, the Indian Health Service, and the U.S. Department of Veterans Affairs, also contribute major funds  and resources directed at CKD prevention and care.

Despite these enormous efforts, the percentage of people with CKD receiving recommended care has remained unchanged for many years. Fewer than 35 percent of people with diabetes and CKD are getting eye examinations or tests to measure blood sugar control or blood lipids. Blood pressure control among CKD patients remains poor. And despite tests that show the kidneys are not adequately filtering blood, many people with CKD are not being diagnosed and therefore are not receiving
care to slow CKD progression.

About 23 million Americans 20 years old and older have CKD. Associated with diabetes, obesity, and cardiovascular disease, CKD prevalence has dramatically increased during the past 30 years. CKD is enormously expensive to treat, representing more than one-quarter of Medicare expenditures.

The report cited Quality Improvement Organizations (QIOs)—tasked by Congress to improve the quality of Medicare services—as having the potential to make great strides in CKD care quality. Each state has in place a QIO that consists of a private contractor or nonprofit organization. A recent initiative, called Ninth Scope of Work, focuses QIOs on determining the rate of diabetes-related kidney failure, slowing CKD progression by ensuring CKD patients are getting high blood pressure medication, and encouraging the early placement of arteriovenous fistulas—the best long-term vascular access—for CKD
patients starting hemodialysis.

Kidney Interagency Coordinating Committee (KICC)

The KICC, chaired by Narva, brings together representatives from nine Government agencies involved in CKD to communicate and coordinate activities across sectors.

“The barriers to achieving greater effectiveness begin with poor visibility,” wrote Narva and co-authors. “Federal program managers experience difficulty in learning about, and staying abreast of, what other Federal agencies do related to CKD.”

In response, the KICC developed an interactive, web-based tool that summarizes CKD-related activities from all nine KICC participating agencies. Called the KICC Matrix, the tool is available on the NKDEP website at www.nkdep.nih.gov/about/kicc/index.htm.

Recommendations

Among the report’s recommendations are the creation of a cross-agency initiative to define CKD-relevant improvement measures, an assessment of current CKD clinical guidelines, the development of better kidney failure prediction tools, and the coordination of efforts to strengthen CKD educational materials for health care providers. The report also recommends looking for successful models of federal collaboration outside CKD prevention and care.

The NIDDK has easy-to-read booklets and fact sheets about CKD. For more information or to obtain copies, visit www.kidney.niddk.nih.gov.

NIH Publication No. 11–4531

This update can be read in the original at: http://nkudic.circlesolutions.com/about/Research_Updates/KidneyDiseaseWin11/3.htm

Notice there is not necessarily new information in the update.  The purpose of bringing it to your attention is to acquaint you with another source of information about your disease.  Why not take a look at some of their other articles?

Until Friday,

Keep living your life.

In the Interests of Being Fair….

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

 

Brewer works to restore transplant coverage

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

 
 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reach the reporter at ginger.rough@arizonarepublic.com

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

Part Two of Me Pretending To Be A Dictionary

Before the weekend, I promised more definitions of the terms you may or may not find in discussions of Chronic Kidney Disease, or to be more specific – your Chronic Kidney Disease.  Without further ado (as they say in certain circles), here they are:

Hormones:  Gland produced chemicals that trigger tissues to do whatever their particular job is.

Hypertension: A possible cause of CKD, 140/90 mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.

Hypertensive nephrosclerosis:  Kidney damage caused by HBP.

Hypertriglyceridemia: High triglyceride [major form of fat stored in the body] levels.

ICD:  International Statistical Classification of Disease and Related Health Problems, provides the medical codes for illnesses.

Ingested:  Taken by mouth.

Integumentary: The skin and its associates like the nails.

Interaction: Food or other medications which will affect how the one being prescribed works.

Kidney Stone: Stone caused in the urinary tract and kidney when crystals adhere to each other, most of those in the kidneys are made of calcium.

Lab: Short hand for medical laboratory, the place where your biological specimens are drawn and analyzed to ascertain the state of your health [think blood and urine, usually].

Lymphadenopathy: Disease of the lymph nodes.

M.A.: Short hand for medical assistant, the one who helps your health practitioner with clinical and administrative matters in the office.

Medicaid: U.S. government health insurance for those with limited income.

 Medicare: U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Meds:  Short hand for medication, chemical substances in the form of a script to treat, prevent, cure, or prevent disease.

Melena: Black, tarry, bloody stool.

MRI: Magnetic Resonance Imaging – a non-invasive method of imagining [seeing] the inside of your body.

Nausea: The feeling in the upper stomach that you need to vomit or are queasy.

Nephrolithiasis:  Kidney stones.

Nephrologist: Renal or kidney and hypertension specialist.

Nephrology: The subspecialty of internal medicine which deals with the kidneys and hypertension.

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

Nephropathy: Kidney disease.

Nondistended: Not swollen.

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

Oral thrush: A mouth disease that can occur in people with compromised immune systems.

Orthostatis:  Fall in blood pressure which produces dizziness upon standing.

Oxalate: A simple molecule found in foods which sometimes combines with calcium to form kidney stones.

P.A.: Short hand for physician’s assistant, someone who is licensed to practice medicine under a licensed doctor’s supervision.

Paroxysmal nocturnal dyspnea: Sudden, recurring night bouts of shortness of breath.

Phosphorus:  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. 

Po: From the Latin per os meaning by mouth, usually found in the directions for a script.

Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.

 Protein:  Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes and antibodies.

Proteinuria: Protein in the urine, not a normal state of being.

Purine: Compound found mainly in beef, poultry, pork and fish that is metabolized into uric acid.

Pruritus: Itching, one whose cause might be kidney disease.

Rales: Crackling, clicking or rattling sounds in the lungs.

Renal: Of or about the kidneys.

Renin: Hormone that regulates blood pressure.

Rhonchi: Dry, leathery sounds in the lungs.

Script: Short hand for lab work order or prescription [orders from a medical practitioner for a pharmacy to provide medication or a medical device] depending upon how the term is used.

Sphygmomanometer: The cuff, the measuring device and the wires that connect the two in a machine used to measure your blood pressure, commonly called a blood pressure meter.

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

Tid:  From the Latin ter in die meaning three times a day, usually found in the directions for a script.

Ultrasound: A certain kind of X ray that requires no radiation.

Ureter:  Carries urine from the kidneys to the bladder.

Veins: Vessels that carry blood toward the heart.

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

The blog was a bit long today, but (hopefully) helpful.

Excuse me, I’ve got to go live my life now.  So, until Friday,

Keep living your life.