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 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,


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.


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.


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.


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!

This Former Hippy Wannabe Likes HIPAA

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

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

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

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

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at defined HIPPA and its purposes in the following way:

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

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

Got it. Let’s take a look at its last purpose. There is an infogram from at  which greatly clarifies the issue. On item on this infogram caught my eye:

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

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

I stumbled across National Conference of State Legislatures at and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

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

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

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

Back to for more about EHR. This time at

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

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

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

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

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

Until next week,
Keep living your life!

A Laboring Electrolyte

It’s Labor Day here in the United States. I feel a special affinity for this holiday and wanted to explain the day some more. Oh, I already did in SlowItDownCKD 2016:

“For those of you in the United States, here’s hoping you have a healthy, safe Labor Day. I come from a union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant aimed at the men who were saving up funds to bring their families here from Europe. I knew there was more than my personal history with the holiday so I poked around and found this from

‘In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories. The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.’”

Now, how do I transition from Labor Day to magnesium? Hmmm, my hard working daughter brought up the subject in today’s phone conversation, but that doesn’t seem like a good transition. Aha! Magnesium is a hard working electrolyte. Okay, that works for me.

Let’s start off with the basics. This passage from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will give you an idea of what magnesium is and what it may have to do with you as a CKD patient:

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride and bicarbonate. They maintain balance in your body. This is not the kind of balance that helps you stand upright, but the kind that keeps your body healthy. Too much or too little of a certain electrolyte presents different problems.”

Problems? With magnesium? Maybe we need to know what magnesium does for us. The medical dictionary part of The Free Dictionary by Farlex at tells us:

“An alkaline earth element (atomic number 12; atomic weight 24.3) which is an essential mineral required for bone and tooth formation, nerve conduction and muscle contraction; it is required by many enzymes involved in carbohydrate, protein and nucleic acid metabolism. Magnesium is present in almonds, apples, dairy products, corn, figs, fresh leafy greens, legumes, nuts, seafood, seeds, soybeans, wheat germ and whole grains. Magnesium may be useful in treating anxiety, asthma and cardiovascular disease; it is thought to prevent blood clots, raise HDL-cholesterol, lower LDL-cholesterol, reduce arrhythmias and blood pressure, and to help with depression, fatigue, hyperactivity and migraines.”

All this by an electrolyte that constitutes only 1% of extra cellular fluid? I’m beginning to suspect that magnesium is the under explained electrolyte.

All right then, what happens if you have too much magnesium? Keep in mind that as CKD patients, electrolytes are not being as effectively eliminated by our kidneys as they could be since we have some degree of decline in our kidney function.

The U.S. Dept. of Health & Human Services of the National Institutes of Health at lays it out for us:

“Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur …. Severe magnesium deficiency can result in hypocalcemia or hypokalemia (low serum calcium or potassium levels, respectively) because mineral homeostasis is disrupted….”

Well, who’s at risk for magnesium deficiency? The same source tells us:

“Magnesium inadequacy can occur when intakes fall below the RDA but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body.

People with gastrointestinal diseases
The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time …. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss ….

People with type 2 diabetes
Magnesium deficits and increased urinary magnesium excretion can occur in people with insulin resistance and/or type 2 diabetes…. The magnesium loss appears to be secondary to higher concentrations of glucose in the kidney that increase urine output ….

People with alcohol dependence
Magnesium deficiency is common in people with chronic alcoholism…. In these individuals, poor dietary intake and nutritional status; gastrointestinal problems, including vomiting, diarrhea, and steatorrhea (fatty stools) resulting from pancreatitis; renal dysfunction with excess excretion of magnesium into the urine; phosphate depletion; vitamin D deficiency; acute alcoholic ketoacidosis; and hyperaldosteronism secondary to liver disease can all contribute to decreased magnesium status ….

Older adults
Older adults have lower dietary intakes of magnesium than younger adults …. In addition, magnesium absorption from the gut decreases and renal magnesium excretion increases with age …. Older adults are also more likely to have chronic diseases or take medications that alter magnesium status, which can increase their risk of magnesium depletion ….”

Notice how many times the kidneys were mentioned. Quick, go check your lab results. You’ll notice there’s no magnesium level. If you’d like your magnesium tested, you or your doctor need to order a specific test for that. Some labs will allow you to order your own magnesium test; others will require a doctor’s orders.

Until next week,
Keep living your life!

The Helper Asks for Help

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

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


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

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

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

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

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

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

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

Additionally, you must have one of the following:

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

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

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

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

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

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

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

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

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


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

Until next week,

Keep living your life!

Guilty Pleasures

I read this phrase somewhere and that’s what today blog is: my guilty pleasure.  It’s my pleasure because my mission is to keep informing about Chronic Kidney Disease and it’s my guilt because I indulge myself in using my own life experiences to ease into this information.

downloadI did promise to write about our wedding reception today.  The first thing that comes to mind is music, lots of it.  Abby Wegerski, Nima Rosensfit (my biological daughters) and Michelle Davis (Cheryl’s daughter and my daughters’ cousin) – all professional singers at one time or another – regaled us with “Going To The Chapel of Love.”  My Arizona buddy, Karla Lodge (another professional singer) blew us away with her own solo.

I don’t know how it happened, but I sang “Hava Nagila,” in a full, clear voice.  That’s odd because I gave up singing since I could no longer stay on key and my voice had become thin and reedy.  It certainly wasn’t that way at our wedding.

One of our guests was Robert Arthur who I met when he was a student in one of the writing classes I taught at Phoenix College almost a decade ago.  We played his original album during the reception when no one was singing.GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

People who didn’t know each other started to interact and I loved it.  At one point, I noticed our best man – Michael Payne – in a tuxedo having a discussion with an unshaven young man wearing worn jeans and an ill-fitting shirt.  The dichotomy tickled me.

Karla, my Staten Island buddy Janet Le, and Michelle, who I still think of as my niece (despite no blood relationship) handled all the kitchen duties so I could just “be the bride.”  Michael made a beautiful toast. So much happened, but it reminds me of child birth; I don’t remember very much of it!download (1)

So let’s get to the heart of today’s blog: pregnancy when you have Chronic Kidney Disease (like the way I slid into that?).  According to the physicians’ journal BMJ,

“Pregnant women with chronic renal [kidney] disease adapt poorly to a gestational [pregnancy] increase in renal blood flow. This may accelerate their decline in renal function and lead to a poor pregnancy outcome.”

That blatantly gives you the bad news first, but it’s not the end of any thought of pregnancy with CKD. You can read the fairly technical, yet highly informative article at:

The following is a 1980 view of pregnancy’s effect on kidney disease.  Keep that date in mind since it is 33 years ago:

  • Increase in proteinuria [protein in the urine]
  • risk of preeclampsia [hypertension (a sharp rise in blood pressure), albuminuria (leakage of large amounts of the protein albumin into the urine) and edema (swelling) of the hands, feet, and face]
  • worsening of anemia [low red blood cell level]
  • lessening of renal function.

While I’ve paraphrased, it’s clear pregnancy with ckd was frowned upon all those years ago.  The study I found the information in can be located at this address:

Okay, lots of definition in the above outdated article.  Let’s see what thoughts about the subject are fairly current.

Pregnancy and Chronic Kidney Disease: A Challenge in All CKD Stages. That’s the title of an article I found at:  The word ‘challenge’ caught my eye, so I did my best to understand the article which summarized information garnered between 2000 and 2009 about the subject.  According to the article, more cases of CKD were discovered during pregnancy than had been expected.  Of course, I immediately wondered if this were a new way of diagnosing CKD.  Of course, I knew I could not be tested this way.  Of course, you know I’m kidding.

baby-shots-5“Chronic kidney disease complicates an increasing number of pregnancies, and at least 4% of childbearing-aged women are afflicted by this condition. Although diabetic nephropathy [kidney disease from long term diabetes] is the most common type of chronic kidney disease found in pregnant women, a variety of other primary and systemic kidney diseases also commonly occur. In the setting of mild maternal primary chronic kidney disease (serum creatinine <1.3 mg/dL) without poorly controlled hypertension, most pregnancies result in live births and maternal kidney function is unaffected. In cases of more moderate and severe maternal primary chronic kidney disease, the incidence of fetal prematurity, low birth weight, and death increase substantially, and the risk of accelerated irreversible decline in maternal kidney function, proteinuria, and hypertensive complications rise dramatically. In addition to kidney function, maternal hypertension and proteinuria portend negative outcomes and are important factors to consider when risk stratifying for fetal and maternal complications. In the setting of diabetic nephropathy and lupus nephropathy [kidney inflammation caused by lupus], other systemic disease features such as disease activity, the presence of antiphospholipid antibodies [antibodies that might be in your blood and might increase the incidence of blood clotting and pregnancy termination], and glycemic control [eating low carbohydrate foods to help manage diabetes] play important roles in determining pregnancy outcomes. Concomitant with advances in obstetrical management and kidney disease treatments, it appears that the historically dismal maternal and fetal outcomes have greatly improved.”

The above is taken from Chronic Kidney Disease and Pregnancy: Maternal and Fetal Outcomes by Michael J. Fischer at:, which is dated April 2007.  I included the entire paragraph since it makes so clear that pregnancy outcomes “have greatly improved.” And that was six years ago! By the way, I added the definitions in brackets.

I seem to be having trouble finding anything more recent, so I’ll summarize what I have found:

  1. Speak with your nephrologist about a high risk team before you become pregnant, if possible.
  2. Pregnancy in early stages of CKD has better outcomes.
  3. CKD may be discovered during pregnancy.
  4. Pregnancy is not an impossibility if you have CKD.kidneys5
  5. Treatment in pregnancy in CKD is continually improving.
  6. The risks are caused by increased renal blood flow along with other factors.

Considering my age, I’ll take my mother’s advice: “Better you than me.”  Don’t let CKD cause you to miss out on one of the wonders of life, but don’t be foolish.  Take care of that baby you intend to bring into the world by taking care of its mother.  Reminder:  giving birth to a baby is not the only way to become a mother.

Until next week,

Keep living your life!

You ARE Part Of The Process

Readers of the blog have repeatedly asked me to include reviews of the book and I have repeatedly forgotten.  Ignoring what that might say about me as a person, I’ve included the Amazon reviews today.  We’ll have to wait for another blog to include the B & N reviews or the blog would be more than double the length of the longest one so far. You can order the book on Amazon or B & N in both print and Kindle, but only print at If you’d like a print book, I can mail you one at the discounted price of $10.00 and you can have me personalize it, too.  Enough selling!
Now, about being involved.  The article I’ve included today has to do with  the idea that the patient must have a say in determining which tests (s)he takes and is written from a physician’s point of view.  I discuss this in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease and you’ll notice that some of the reviews mention it, too.  This is your body, your life. Certainly you should seek the advice of medical experts, but the decision whether or not to take (insert name of medical test) is ultimately yours. This post is from  The URL is: As usual, the comments in brackets are my own and not part of that post.
 Shannon Brownlee’s recent post, “Don’t discard shared decision making on the basis of PSA testing,” [that was a previous post on the same blog] couldn’t ring more true. The crux of shared decision making is that the patient must decide, with his or her physician, which tests or procedures make sense, given the various risks, tradeoffs and outcomes. Discarding the construct on the basis of one test (PSA testing) [in that previous posting] is not only poor form in that it is a sample of one, but also what might not seem like much of a choice to some may be the biggest choice of all to someone else.Choice is the operative word in this debate. Patients need to know their options, regardless of physician opinion or what research says would probably happen (i.e. a false positive). It is up to the patient to choose whether the odds are worth it to them. And while PSA testing [again, this post refers to all medical testing, not just PSA]  may not be strong in validity (though the research does conflict), causing some doctors to (erroneously, in my opinion) consider it non-elective, there are certainly other common medical tests that warrant shared decision making, such as colon cancer screening, for example. In addition to the decision of whether or not to be tested there are several choices about how to get tested and then after that several choices about what to do in the event that a polyp is found. When medical evidence supports more than one approach to testing, patients should be informed about their choices and providers should respect their preferences.Shared decision making is not just the right thing to do, it is one of the most effective ways to combat the myriad health issues affecting us today – quality, cost, satisfaction. Shared decision making is not meant to encourage or discourage certain tests or procedures – it is meant to involve and educate each patient so that no medical choice is made without them.  And that makes patients happy – exercising the right to be involved in decisions about their care. Once educated, patients do tend to select less invasive procedures on average, as Shannon notes, and costs thereby go down as does the risk of medical error or unwanted care. A randomized controlled trial in the New England Journal of Medicine also produced these effects: a shared decision making intervention produced 9.8% fewer inpatient and outpatient surgeries and 11.5% fewer hospital admissions.

Shared decision making makes healthcare better. To my fellow physicians trying to determine whether to test or not to test – include the patient first. Is the patient involved? That is the real first question.

Peter Goldbach is Chief Medical Officer, Health Dialog.

So, read the reviews below and then get involved in your own life.  Ask questions, weigh the options and let your medical expert help you make YOUR decision. 


This book includes TONS of definitions and images and is a good read for anyone looking to learn more about kidney disease — whether your a doctor or a recently diagnosed patient. Her perspective is real and her stories will relate with many. The book touches on many topics from related health complications to dealing with nephrologists and maintaining a kidney-friendly diet. If you or someone you know is facing CKD, I highly recommend reading this book. Take experiences from those who have already gone through it and are looking to help.
Gail Rae’s story and book are a terrific resource for anyone facing the challenges of CKD.  “What Is It and How Did I Get It?” is an honest, personal, forthcoming account of what it takes to stay on top of your own health. It’s great that Gail empowered herself by education and learning — resulting in trusting herself.  Hopefully, her story will teach others to take control of their own health by eating the right diet, exercising, and taking the time to understand the myriad of information that comes from the medical world.  She does an excellent job of explaining what happens once someone learns they have kidney disease.  From what happens with every medical exam, test, visit to a doctor, researching medicines, nutrients, causes, body functions, physiology, etc…touching on every aspect in a very helpful way.  This book is a must read for anyone who has any questions about kidney disease, whether it’s personal or for a loved one.
This is a must read for anyone who has kidney disease. I had the privilege of reading Gail’s book and  interviewing her on the radio. For anyone with kidney disease, this is one of the best books around written by someone who has kidney disease. I recommend this book highly!!!!!!!
Gail Rae’s book, What Is it and How Did I Get it?: Early Chronic Kidney Disease provides information about this disease from the patient’s viewpoint. Having dealt with many doctors while dealing with a different health issue, I have learned how important it is to understand what all the tests and procedures mean. From my viewpoint, it’s also important to know how to talk with your doctor and even more importantly in my opinion to know how to get the doctor to talk with you about prognosis, treatments, and any questions you have. Her book gives you the basic understanding about chronic kidney disease and addresses issues that can puzzle and frighten patients. She gives you her experience as a patient as well as information she’s researched trying to find her own answers. A useful resource for anyone dealing with Chronic Kidney Disease.
 This book is wonderful because it explains all you need to know for early stages of ckd and not in medical terms, but in terms that everyone can understand. The author was so passionate about getting the information to others who are going through what she went through as this information was not avaialble to her. Her altruistic motive for this book is also what makes it wonderful. I would definately buy a copy if I were you.
Having lived with autoimmune diseases since my late 20’s, and I know first hand what it’s like to get a new diagnosis.  Even with the internet, it’s hard to get solid, reliable and empathic information.  This book does it all in an easy to read format.  I think this is useful for a person with any new diagnosis because it highlights the issues people wonder and worry about.
 As the daughter of a mother who has early stage CKD, I have to admit at first I panicked at the diagnosis. What exactly did it mean? I was relieved to find this book and even more so relieved to find that it was written in plain English and not Medical-ese. Author Gail Rae has written an easy to follow book not just for the newly diagnosed early stage CKD patient, but, also for their family members and friends. There’s even an entire chapter dedicated to questions raised by friends and family. I highly recommend this book for both the newly diagnosed early CKD AND their family/friends.
 This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness.
I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations.  For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!
This book is especially good for the newly diagnosed with CKD. So much information in a well written format. The author, a teacher and a writer uses her excellent skills to make this disease easier to understand and “navigate”. Highly recommended. Medical specialists should give this to all of their kidney disease patients.
Thanks for the chance to let you know how others view the book.
Until next week,
Keep living your life!

Let’s Hear It From The Other Side

What a weekend!  We went up to Prescott, Arizona, to donate some copies of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to doctors up there and drove right into – are you ready? – SNOW.  We were not prepared, but were absolutely delighted.  This called for an unscheduled stop to feel it on our faces again.  You’ve got to remember I’ve been out of NY for a decade. Above is what we usually see on road trips.  Notice, no snow.

We didn’t just work, either.  I heartily recommend the 1912 Hotel Vendome which is a very homey bed and breakfast with the best home made waffles (home made – low phosphorous, something we can eat!) If you get up there, speak to Eric, the owner, about connecting with Darlene for  a ghost tour which includes as much history as it does spectral information.  Drive over to the Heritage Park Zoo which houses ONLY rescued and rehabilitated animals.

If you’re still feeling zooish, go to Bearizona near Williams which is a drive through.  You better keep those windows tightly closed and keep moving through because those bears are not shy of humans as a swipe at our bumper that set the car rocking let us know. This zoo is 55% rescues and rehabilitated animals.  I don’t think I’ve ever enjoying a working weekend more.

Working… ah, the book.  Remember you can email me at: for a personalized book at the discount price of $10.00.  You can buy it in either the digital or print form at or B&  It’s also available, but in print only,  at

A while ago, Dr. Kevin Pho had me guest blog on his  Recently, I wrote a blog about being in charge of your own treatment.  Somehow, somewhere I realized that I’d never advocated for the physician.  As a patient advocate, that makes sense; but is it fair?  Then I came across this book excerpt on Dr. Pho’s site and I had my answer.  I had to give the other side the opportunity to be heard.

I need to advise you that I have not read this book, simply the excerpt on Dr. Pho’s site.  However, I do like what the author has to say for the most part.  My concern here is if we do attempt to become this friendly and human with the physician, will she (or he) have the time?

It’s been clear to me – no matter what kind of doctor I see – that the physician is very carefully watching the amount of time spent with me.  Other patients I’ve spoken with about this have agreed: our beleaguered physicians have only so much time for each patient.  I would suggest keeping that in mind as you read the excerpt.

An excerpt from The Take-Charge Patient: How You Can Get The Best Medical Care (Lemon Grove Press) which will be released May 15, 2012. 

Here are a few suggestions that will help you make the most of your relationship with your doctor. They are for your benefit as a patient, because the more you know, the more empowered you will feel.

Remember That Doctors Are Human Beings

Almost every health care professional emphasized that we all must realize that doctors are people just like us. They have personalities, feelings, good days, bad days, families and social lives.

Sometimes doctors are forced to sacrifice important events to tend to their patients. They miss their kids’ soccer games, medical appointments, school meetings and social events. Sure, they chose their profession, but the demands and sacrifices are great. I never realized just how much they sacrifice for their patients until I interviewed the physicians for this book.

Humanize Yourself to Your Doctor

It’s easy for us to feel the urgency to get right to the point of why we are seeing the doctor. We begin listing symptoms, talk about how we aren’t feeling well, and ask for help.

I happen to believe that if we jump right into our symptoms, that is how the doctor will view us—as a set of symptoms she needs to diagnose and treat. I want my doctor to see me as a human being, just as I see her. If she sees me as a human being, then more than likely she will connect to me personally, and that can enhance her willingness to help me. This may not always be possible as some doctors simply are not interested in connecting personally to their patients.

Use Your People Skills

If someone likes you, they are more willing to go the extra mile for you. This is where your people skills are useful because your doctor will respond to you more positively if you are friendly. That isn’t always easy if you aren’t feeling well, but I’ve heard from many doctors that a patient who is angry, bitter, belligerent or has a bad attitude is not well liked. Being a likeable patient is being a smart patient.

Being a smart patient doesn’t mean you are faking or being disingenuous. It means you implement strategies to maximize your interaction with the doctor and her staff. You don’t have to put up with bad treatment or allow anyone to treat you disrespectfully—I’m not suggesting that you be a doormat. I’m suggesting that being a nice person will get you more of what you want.

Be Nice to Your Doctor

Be nice, polite and appreciative. Many doctors shared experiences with me about patients who were not nice to them. If you aren’t nice to your doctor, you are not going to get what you want.

Your doctor has something you want that you cannot give to yourself. Do your best to elicit a positive response from your doctor. It’s just common sense.

We’ve all had experiences with doctors who have made us wait forever when we weren’t feeling well or whose staff ignored us or were rude or unhelpful. I’m not asking you not to stick up for yourself; I’m asking you to express yourself diplomatically because you need what this doctor has to offer.

I try to show goodwill and appreciation toward my doctors not just from a public relations perspective (although that does factor in), but also because I do truly appreciate what my doctors do for me. I am mindful of how far a simple verbal thank you or thank-you note goes.

The goal is to let your doctor know that you value the good care she gives you. If your doctor goes the extra mile for you, express gratitude. We all like to hear that we have done well or that we have done something to improve someone else’s life. Doctors need that too.

If you complain a lot or approach the doctor and staff with a bad attitude or a sense of entitlement, you are simply not going to get what you want. If there has been a serious error or act of obvious neglect, channel your anger so you don’t come across as out of control. Remember—be firm but respectful. No name-calling or yelling. You only discredit yourself if you yell at doctors and their staff. You look like the villain if you lose control.

Be Nice to the Doctor’s Staff

Befriend the doctor’s staff. This will help you in a multitude of ways. For example, if you have an urgent message for the doctor, need to see the doctor the same day, need a prescription refill sooner rather than later, or need a procedure scheduled immediately, most of the time you’ll get your needs met much sooner if you are friendly and appreciative of the doctor’s staff.

Most medical professionals suggested trying to talk with the same person each time you call the office to establish a relationship with that person. This will be your go-to person if you ever have an important need to be addressed.

If the front desk person fits you in for an urgent appointment, thank her. This person did you a favor.

Be Nice to the Doctor on Call

Several doctors mentioned the importance of being polite and respectful to the doctor on call—the physician who is covering for your doctor. If you are not, word gets around. This affects how the doctor and her staff perceive you, and it can affect the quality of your medical care.

Act Involved in Your Health

Who knows your body better than you do? You are the expert on you—share with your doctor what you know so she can do her job.

Most doctors said that patients who are involved and invested in their health cause them to be more involved and invested in the patient’s health. Many physicians said that if a patient doesn’t care, it makes their job much more difficult. Many said that patients who don’t care aren’t going to follow their instructions to get better.

If you think about it, what is your doctor’s motivation to go out of her way for you if you give the impression you don’t care about your health and medical care?

You can find the original of this at

This seems like simple common sense to me, but when you get sick, sometimes that just goes right out the window.  I’m not proud of it, but I clearly remember leaving screaming messages on a former nephrologist’s answering machine when he would not call me back about surgery I was having in just two days.  (I finally had the surgeon call him.)  Yes, he was an incredibly arrogant person who had no respect for me, but did it help that I treated him – shall we say – less than respectfully, too?  Answer: Nope, it just helped my self- respect fly out the window.

Until next week,

Keep living your life!

A Doctor’s Advice To Other Doctors

I’ve got to start off with my commercial, of course.  Not being a business person, I have no clue how to let the public know about the book or any sales so I mention it here to give you the first shot and to allow you to show it to those who might be interested.  To be honest, I really don’t care for this part of being the author but can’t figure out how else to get the book in the hands of those who need it.  (Hint: suggestions welcome.)Okay then, if you email me at, I will send you as many copies of the book as you’d like for $10.00/copy instead of the usual $12.95.  We can handle the payment via PayPal.  It’s a simple process and they are trustworthy.  Oh, is that the sound of orders rushing into my mailbox?

Now on to the reason you read the blog:
I’ve had this article from in my file for months while I decided if it were relevant or not.  Obviously, I decided it is.  Why?  Because I just had one of these frustrating experiences with one of  my own doctors.  She raced in, raced out, paid no attention to what I was saying and didn’t look at my face once.She is no longer my doctor despite being listed as one of Phoenix’s best doctors in Phoenix Magazine’s 2012 Top Doctors of The Valley issue.  She IS one of the best doctors here, but I cannot let her just do what she wants with my body when she wants without explaining it to me.  Maybe I’m wrong, but one procedure I did allow her to do caused nothing but unnecessary pain without rectifying the condition.  And then I discovered  she did not give me the proper after care instructions!

I don’t think doctors often listen to their patients’ suggestions, nor do I think we often give the suggestions.  We just get angry and change doctors.  That is why I was happy to see that Dr. Carone chose to give this advice to her colleagues.

10 ways doctors can lose their patients


As a neuropsychologist, I have the chance to talk to patients throughout the week in detail about their medical histories, supplemented by a comprehensive medical records review. Part of this involves discussing which provider the patient has seen and if the provider was changed, why. Sometimes, a provider is changed for a benign reason, such as a move or an insurance change but other times there are significant complaints. Granted, there are always two sides to every story but when I consistently hear the same or similar story from different patients year after year, the stories gain credibility.

Then, when I start to notice the same problems during my own doctor visits, I know there are some serious problems that can be fixed. So, listed below are my top 10 ways for doctors to lose patients from their practice. If you have others to add to the list, please do so.

10. Not accepting lists of symptoms or timelines from patients. If you see patients, you know they range on a continuum from poor historians who have no idea why they are there to see you and those who arrive with carefully constructed histories that they are eager to give you as soon as you walk in. Just about the worst thing you can do when this happens is to tell the patient that you don’t want the list and do not even want to look at it. That connotes a dismissive attitude to the patient and it makes them feel like all of their work was for nothing – work that was done in the hopes it would help you figure out what was wrong. You may have very good reason at the time not to look at the list such as time pressure, but at least take the list and say you will later take a look at it. It will likely provide you some useful information.

9. Asking patients to choose what type of medication they want to take. When a patient has a medical condition in need of medical treatment, the physician is looked to provide their advice as to what medication to take. They don’t want to be given a list of three possible medications, told to research them at home, and come back with a decision. From a patient’s perspective, this is why the doctor went to medical school, not me.

8. Long wait times and no apology and/or rushing the patient once coming in. While no patients want to wait long, they will generally accept the wait time if they are pleased with the care you provide, or if it the initial visit, know that you have a good reputation. However, if the patient waits long and you then walk in and do not acknowledge the wait, explain why there was a wait, and apologize for the wait, it will significantly aggravate the patient. Rush the patient after a long wait and no apology and it will worsen the situation further.

7. Poor bedside manner. This is an easy one and has been addressed extensively by others, but don’t do things such as repeatedly looking at the clock, repeatedly interrupting patients, focusing more on you than the patient, talking rudely, making poor eye contact, etc. Follow the Golden Rule and you will easily establish rapport the majority of the time.

6. Not being responsive to challenging questions. Provided that a patient is being respectful, there is no reason to become upset when a patient asks questions challenging a diagnosis or course of treatment. Most patients are generally accepting of your expertise but they may have heard or read something that has given them legitimate questions. Your answers can help reassure the patient that your diagnosis and treatment is correct. Patients are also usually more impressed when you tell them you have no problem with them seeking a second opinion rather than demanding they only accept one point of view and/or becoming overly defensive. Also, patients (or families) sometimes come up with questions that can lead you to entertain an idea you did not previously think of that can improve care. Don’t shy away from this. Embrace it.

5. Disrespectful staff. While the patient may like the care you provide, there are a host of other people they need to interact with before and after the appointment. This includes the receptionist, billing staff, nurses, and others. If these individuals are rude and disrespectful, the patient will likely switch to another provider whose friends and family say have better ancillary staff. It is like owning a restaurant with good food but a terrible hostess and waitress. Many people will just choose a different restaurant. Train your staff to treat your patients they way they would want to be treated (and teach them how to manage patients who are rude) and you will have a happy client base.

4. Drab and dreary office space. No one likes to go to the doctor. Take some time to make it a more enjoyable experience. Have comfortable seats in the waiting area and waiting room, put some nice art up on the walls (geared towards children if it is a pediatric office), have a TV on with cable (with cartoon options for children), soft music, etc. Whether right or wrong, offices that are bare, uncomfortable, and cold looking convey a message that the patient perspective is not being considered.

3. Being unavailable when needed during routine business hours. When the answering service repeatedly picks up the phone during normal business hours, it is extremely frustrating for patients. Same with staff not returning phone calls or being absent for 1.5 hours during lunch time. Patients need to have access to staff during normal office hours to make appointments and ask questions.

2. Cancelling/rescheduling appointments too often. Patients are understanding when a doctor needs to cancel or reschedule but not if it happens too often. This was highlighted in the recent trial of Dr. Conrad Murray, whose former patient testified that after two follow-up appointments were cancelled he felt that the doctor blew him off. The patient never followed up with Dr. Murray again.

1. Making decisions that cause patient harm that were easily avoidable. While patients will sometimes give doctors a second chance, they won’t be inclined to do this if harm occurred to the patient or a family member that could have easily been avoidable. This is especially true if the harm happened to a child. As a personal example, I recall repeatedly explaining to my pediatrician that my child’s cough and wheezing was persistent and affecting her breathing, only to be repeatedly told that it was only allergies, despite the fact that she was cleared by an allergist and was not improving with allergy medications or a nebulizer. Finally, and only by pressuring the physician to do more, was a chest x-ray ordered. Diagnosis: double pneumonia and a week long hospital stay. Totally avoidable. The new pediatrician is very responsive and we have been very pleased for many years.

Dominic A. Carone is a neuropsychologist who blogs at

 Until next week,

Keep living your life!


National Kidney Month And Doctors Who Get It

Yesterday, day four of National Kidney Month, my buddy Karla and I met at the Herberger – our state theater – to see a play I knew nothing about.  For me, it was just an excuse to get together and see a friend of hers onstage.  The play, “Dead Man’s Cell Phone,” turned out to be about what happens to a trafficker in human organs and the people he’s connected to after he dies. Naturally, I want to play the role of his mother in some other production of this play. It’s an odd-ball role, right up my alley.

But what really struck me was that I unwittingly chose to attend a play about kidneys during National Kidney Month.  At the talk with the actors after the play, I mentioned that.  Not one person in the theater (and it was half full of people who stayed for the talk) knew this is National Kidney Month.

That’s why I’ll be posting something about the kidneys on Twitter every day this month.

I’ll also be guesting on a radio show for this purpose tomorrow night, Tuesday March 6th from 7:30pm – 9:30pm EST. The URL for this is:

And I’ll be at The Kidney Foundation’s 21st Annual Chattanooga Renal Symposium on March 29th, 2012.  The event will be held at the Historic Sheraton Read House. If you’re anywhere nearby,  I’ll be in the vendors’ area with 200  nephrologists milling around.  Come say hello.

This month a specific nephrologist and I will be exploring selling our books as a set, one book written by the doctor and one written by the patient.

I’m doing my bit for National Kidney Month.  What can you do?

World Kidney Day is Thursday, March 8.  I expect there to be all kinds of symposiums, conferences and information booths available to you that day.  Why not bring a friend who doesn’t know much about Chronic Kidney Disease and the need to be tested for it to one of these?

We patients are not the only ones trying to be aware.  This New York Times article can give us some insight into what some of our doctors are doing to stay aware.

Teaching Doctors to Be Mindful

Doctors from across the world gather at the Chapin Mill Retreat Center in Batavia, N.Y. to bring intention, attention and reflection to clinical practice.Brett Carlsen for The New York TimesDoctors from across the world gather at the Chapin Mill Retreat Center in Batavia, N.Y., to bring intention, attention and reflection to clinical practice.
It was 6:40 in the morning and nearly all of the doctors attending the medical conference had assembled for the first session of the day. But there were no tables and chairs in sight, no lectern, no run-throughs of PowerPoint presentations. All I could make out in the early morning darkness were the unmoving forms of my colleagues, cross-legged on cushions and raised platforms, eyes closed and hands resting with palms upward in their laps.

They were learning to meditate as part of a mindful communication training conference, held last week at the Chapin Mill Retreat Center in western New York, and sponsored by the University of Rochester Medical Center.

There has been a growing awareness among doctors that being mindful, or fully present and attentive to the moment, not only improves the way they engage with patients but also mitigates the stresses of clinical practice.

Mounting paperwork demands and other time and productivity pressures can lead to physician burnout, which affects as many as one in three doctors, recent studies have shown. The loss of enthusiasm and engagement that results can lead to increased errors, decreased empathy and compassion toward patients and poor professionalism. Other problems include physician substance abuse, abandonment of clinical practice and even suicide.

Despite the pervasiveness of burnout, few interventions have been shown to be effective. But two years ago, University of Rochester researchers studied the effects of a yearlong course for practicing primary care physicians in mindful communication. Their findings, published in The Journal of the American Medical Association, showed that doctors who took part in the course became more present, attentive and focused on the moment and less emotionally exhausted over time. Moreover, the doctors’ ability to empathize with patients and understand how patients’ family and work life or social situation could influence their illness increased and persisted even after the course had ended.

“Mindful communication is one way for practitioners to feel more ‘in the game’ and to find meaning in their practice,” said Dr. Michael S. Krasner, an associate professor of clinical medicine at Rochester and one of the study authors. He, along with his co-author Dr. Ronald Epstein, a professor of family medicine, psychiatry and oncology at Rochester, developed the course in mindfulness.

But it takes training, and that training can be particularly challenging for physicians who are used to denying their personal responses to difficult situations. In addition to learning to meditate, doctors participate in group discussions and writing and listening exercises on topics like medical errors, managing conflict, setting boundaries and self-care. Small group discussions are meant to increase awareness of how one’s emotions or physical sensations influence behaviors and decisions.

In one exercise, for example, doctors are asked to write about a mistake in their professional or personal life. Examples of such errors have included missing a diagnosis, prescribing the wrong medication, making assumptions about a patient that led to inadequate care or failing to be present for their own families because of an inability to balance work and family life. The doctors must then discuss the issue with two peers, describing not only the event but also any associated physical and emotional sensations. One of the other doctors has the task of practicing appreciative inquiry, or listening without making judgments or jumping to conclusions. And the other serves as an observer, offering suggestions at the end of the session for how the listener might improve his or her skills.

Many of the participants at last week’s conference, capped by the organizers at 40 and coming from the United States and Canada and from as far away as New Zealand, described the four-day experience as “transformative.” “I can honestly say that these have been some of the most important days of my life,” said Dr. Elissa Rubin, a pediatrician and lactation consultant who traveled to the conference from Mineola, N.Y., on Long Island.

But the real challenge for these participants — and the growing number of advocates of such training — is not acquiring mindfulness. It is finding the time and support necessary to sustain their skills and teach others.

Once back in their work environments, many say it is easy to fall back into old patterns. Dr. Krasner and Dr. Epstein have had to close down some of their programs directed at interns and residents because of financial issues. And a frequent topic of conversation among several of last week’s participants who hoped to teach at their own institutions were how to best introduce these ideas to colleagues who might be skeptical or administrators who might be hesitant to set aside valuable clinical time for training courses or pay for a program that does not generate revenue.

Nonetheless, Dr. Krasner and Dr. Epstein remain optimistic, in large part because they believe that mindful communication is not just another optional skill or fringe fad in health care. “Mindfulness,” Dr. Epstein said, “and the self-awareness it cultivates, is a fundamental ingredient of excellent care.”

Their patients would agree. In clinic, a patient who has suffered for years from chronic pain told me why he remained Dr. Epstein’s patient. “He’s the best doctor I’ve ever had because he can get to what I am trying to say quicker than any other doctor.

“I’m not sure how he does it, but he just really gets it.”

You can view the original article at:

Until next week,

Keep living your life!

Getting Back To Basics

This is what early stage CKD looks like

What an exciting week last week was.  The TweetChat was one of the most enjoyable learning experiences I’ve had to date… and I’m still learning about that.  The book signing at Bookmans (without the apostrophe) introduced me to several other health related authors I definitely resonated with as well as a maybe cousin who introduced me to the world of YouTube, so expect to see me there as soon as I can fit it into my schedule. In addition to that, I found so many articles that are apt for us that I had a really, really hard time choosing one. Here’s the winner of that contest:

Living a full life after a chronic kidney disease diagnosis

Learning that you have any disease can be a disheartening experience. However, when you are diagnosed with an early stage of chronic kidney disease (CKD) there are many things that you can do to slow its progression, and live a full life. By being conscientious about your health care and lifestyle choices, you can positively affect your quality of life when you have chronic kidney disease.

Tips for living a full life with chronic kidney disease

Here are a few basic tips that may help you slow the progression of chronic kidney disease and live a happier life:

  • Knowledge is power – Learn all you can about kidney disease and its treatments.
  • Honesty is key – Communicate openly with your health care team and ask the same from them.
  • Make lifestyle changes – Be attentive in learning your kidney care plan, take your prescribed medicine, follow the kidney diet and make other recommended changes.
  • Think positive – Fill your life with people and things that make you happy. Staying positive is one of the best choices you can make when you have chronic kidney disease.

Knowledge helps you live a full and happy life

When it comes to chronic kidney disease, there is much to learn, from what type of medicine you need to how you make your diet more kidney-friendly. If you continue to learn all you can about chronic kidney disease, you may feel better equipped to deal with it head on. Ask your health care team any questions you may have. You can also go online to see if there are local support groups that meet in discussion forums or in person.

Communicate honestly with your health care team

Your health care team is there to help you manage your chronic kidney disease. It is best to communicate honestly with them so they can best treat the disease.

The kidney diet, medication and other lifestyle tips

Getting answers and guidance to know what to do when you find out you have chronic kidney disease helps you feel more in control of your health. This includes changing your eating habits to include more kidney-friendly foods. To keep your kidneys functioning for as long as possible, it is essential to learn about protein, sodium, phosphorus and potassium, along with knowing how these nutrients make a difference in your health.

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

Studies confirm that keeping your blood pressure in check can help slow the progression of kidney disease, especially if you have diabetes and/or proteinuria (protein in the urine). According to the National Kidney Foundation (NKF) guidelines, you should keep your blood pressure at or below 130/85 if you have kidney disease, and at or below 125/75 if you also have diabetes and/or proteinuria.

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

If you have diabetes, tighter management of your blood glucose level can help slow the progression of kidney disease. It is important to keep your hemoglobin A1c at less than 6.5% or at the level established with your doctor, and closely monitor your blood glucose to avoid hypoglycemia. Ask your doctor or diabetes educator about your diabetes treatment goals and options.

Think positive after your diagnosis

After being diagnosed with an early stage of chronic kidney disease, you are in a good position to take control of your health. Having a positive attitude and surrounding yourself with a support system is necessary to help you live your life to its fullest. As you have learned, there are many ways to slow the progression of kidney disease. Keeping your kidney diet in mind, taking your medicines, controlling any other health issues you may have and changing some lifestyle habits can help. You will have a team of kidney health care professionals on your side to help you every step of the way.

You can find the article at which is part of from DaVita.

“Fill your life with people and things that make you happy.”  This sentence popped out at me.  A few months ago I decided to only be with people who wanted to be with me.  I was tired of constantly calling and running after people I loved who didn’t seem to have the time for me.  It was, and sometimes still is, a bit painful, but I also enjoy my time with friends and family – even professional relationships – so much more.  There are fewer people in my life, but these are the people who live on a two way street: one way to them; one way to me.  I almost wish I’d figured this out a long time ago, but then I would have missed out on the fun I had with the others (the ones who no longer want to be with me), the love that existed then and all the lessons we learned together.  I guess it’s true that people are in your life as you need them and they need you.  I’ll count myself very lucky for having known those people and think kindly of them as I hope they do of me.

Look at the time!  I’ve got to go now.  A long time buddy is in from New Jersey and I get to see her!!!

Until next week,

Keep living your life!

EPO Good, No, EPO Bad

In preparing for tonight’s TwitterChat, Mandy from Libre asked me about any medications I’d like to mention.  I immediately thought of EPO. I remember when I was first diagnosed and complained of fatigue, my nephrologist at the time talked about receiving EPO intravenously.  I think he said twice a month.  And I was horrified.  I didn’t know why; I just was.  It wasn’t the needle because I was used to that already from all the blood tests CKD patients take and the IVs I’d had for various procedures.  It just felt wrong, wrong way down in my gut.  Being a great believer in things happening for a reason whether we know the reason or not, I refused.  And then I refused again.  After reading the two articles from which I’ve taken excerpts for today’s blog, I’m glad I did.

Blood protein EPO involved in origin and spread of cancer

[PRESS RELEASE 5 December 2011] Researchers at Karolinska Institutet have demonstrated that a growth hormone, PDGF-BB, and the blood protein EPO are involved in the development of cancer tumours and that they combine to help the tumours proliferate in the body. These new preclinical findings offer new potential for inhibiting tumour growth and bypassing problems of resistance that exist with many drugs in current use. The results are published in the scientific journal Nature Medicine.

Yihai Cao Photo: John Sennet

Angiogenesis is the formation of new blood vessels from pre-existing ones, and is one of the most important research fields in the treatment of such diverse conditions as cancer, metastases, obesity, heart disease, stroke, diabetes and chronic inflammation. The process is also important in healthy individuals for wound healing, the menstrual cycle and other normal processes. Professor Yihai Cao and his team are researching into angiogenesis and its links to cancer and other diseases, and in the present study show the significant role played by a growth factor, PDGF-BB.

“EPO has several functions,” says Professor Yihai Cao. “It produces more blood and stimulates angiogenesis, and we have revealed the underlying mechanism. It also stimulates tumour angiogenesis by directly stimulating the proliferation, migration and growth of endothelial cells and their ability to form the so-called epithelial tube. PDGF-BB promotes the stimulation of extramedullary haematopoiesis, enlargement of the liver and spleen, which increases oxygen perfusion and protection against anaemia.”

The introduction of PDGF-BB in mice thus boosts erythropoietin production and the haematopoietic parameters. In addition, EPO may directly act on tumor cells to promote their growth and metastasis.

You can find the entire article at: . It is from Nature Medicine AOP 4 December 2011

Then I found a blog written by a doctor as a patient. This is part of that Wednesday, December 07, 2011 blog. You can read the entire blog entry at:

EPO: Lighting the Fires of Cancer

By Peter Laird, MD

Erythropoietin (EPO) is a natural hormone that mediates the production of red blood cells (RBC’s) that is primarily produced in the renal cortex and small amounts in the liver. Studies over the last decade evaluated the effects of  EPO in diverse populations at risk of anemia outside of the renal dialysis patients, especially in patients undergoing chemotherapy for a variety of cancers. Unfortunately, these studies revealed adverse survival with more rapidly progressive cancers and shortened survival. In addition, in the CKD population, patients were more likely to experience cardiovascular events and death bringing the CHOIR study to an early close as well.  The TREAT trial followed shortly with a higher risk of stroke for patients treated with EPO for CKD related anemia.

Many patients sustained with EPO for years on dialysis vocally protested the new FDA labelling changes and the removal of minimum Hb levels in the QIP. Despite the increased risk of cardiovascular outcomes with EPO and the suspected increased cancer risk for chemotherapy trials, the correction of anemia for many patients overcame the potential risks. However, a new study highlighed by Gary Peterson of RenalWEB sheds light on the role of EPO not only in promoting cancer, but it is actually involved in the development of cancers as well:

PDGF-BB modulates hematopoiesis and tumor angiogenesis by inducing erythropoietin production in stromal cells

As a cancer survivor in addition to my IgA nephropathy and dialysis, I have been very leery of EPO right from the time I first started on dialysis in 2007. My first confrontation with my health care team at dialysis came about when I refused to continue EPO shortly after beginning dialysis. In retrospect of current guidelines, I never needed EPO with a Hb over 12.0 with only iron infusions alone. The issue of adverse cardiovascular outcomes and now this new basic science information that EPO is involved in cancer formation leaves dialysis patients with hard choices. EPO prevents the need for blood transfusions and their associated complications, but at what price?

This brings up the subject of advocating for yourself.  You do NOT need to accept what a doctor tells you or recommends to you just because you are not a doctor and s/he is.  Refuse (unless it’s an emergency) and go home and research…or get a second opinion…or call another patient you trust to suggest another way of finding out if you do need this whatever it is you’re not comfortable with.

On the book front, you already know about tonight’s TwitterChat at 8-9 EST at WhatHowEarlyCKD, courtesy of Libre Clothing.  You do know about that, don’t you?  Come join us.  Bring your questions, comments and friends.  Let’s make this a lively hour.

Those of you living in Arizona, I’ll be looking forward to meeting you on Saturday, January 14th, from 1-3 at Bookman’s in Mesa.  The address is 1056 S. Country Rd.  C’mon down!

Until next week,

Keep living your life!

This is what early stage CKD looks like

Glad To Know I’m Not The Only Optimist Out There

Sometimes people stop me when we’re talking just to tell me they are impressed with my optimism in the face of my disease… and I’m dumbfounded.  Doesn’t everyone with CKD keep living their lives, I’ve wondered again and again when I hear this comment.  Then I remember a nephrologist who accused me of being so involved with my disease that he thought I would just give up and become a professional patient.  He is obviously one of those doctors who just doesn’t take the time to know his patients. But, more importantly, he’s one that doesn’t understand how important it is to make sure optimism is part of the treatment plan.

In searching CKD blogs, news reports and anything else I can find that relates to CKD each week, I stumbled upon this one and thrilled at its message.  I am NOT the only optimist out there!  While I don’t necessarily agree with all this author epouses, there’s enough here that makes me think the message is well worth the read.

At the top of their blog page they run the message: “Live Now is a movement to start living on your terms, with hope, optimism and strength.” Their philosophy seems to be: “Kidney disease doesn’t define your life – you do. It’s time to get up, get out and live for today.”  They’ll get no argument from me.


Don’t Worry, Be Happy

By Contributing Writer and PD Patient Jim McFarlin

“Happy Days Are Here Again.”

“Keep Your Sunny Side Up.”

“Put on a Happy Face.”

“Don’t Worry, Be Happy.”

“California Girls.”

OK, maybe that last song title doesn’t quite fit. (Or maybe it does. Hey, different strokes for different folks!) But ever since a caveman rubbed two sticks together and invented the rhythm section, it seems every era has had at least one popular tune encouraging its listeners to look on the brighter side of life.

Know why? Because LIFE IS HARD, that’s why! It’s chaotic, tedious, unpredictable and frequently unfair. And it feels even tougher when you have to face it each and every day in the company of a severe and disheartening illness – like Chronic Kidney Disease (CKD) or End-Stage Renal Disease (ERSD).

Oh, cheer up!

No, seriously. Cheer up.

The concept of a Positive Mental Attitude (PMA) has been bouncing around our collective consciousness long before Napoleon Hill coined the expression in his book Think and Grow Rich in the 1930s. Modern research suggests the ol’ PMA can play a major role in protecting you from the physical damages that ransack your body as a byproduct of stress.

Think and “grow” healthier. What a concept!

Home therapies like Peritoneal Dialysis (PD) (the treatment I use) and Home Hemodialysis (HHD) should give patients multiple reasons to be happier with their lot in life. They avoid having to arrange transportation for trips back and forth to the dialysis center several times each week; don’t have to sit in sterile, austere clinics for hours waiting for their procedure to be completed, and escape the frustration of having their time wasted when their scheduled appointments are delayed.

Nonetheless, you do have a serious illness. CKD saps your energy, alters your lifestyle, and can dominate your thoughts. You certainly can be forgiven for not wanting to giggle like the Pillsbury Dough Boy every day. I tend to think of myself as a generally optimistic and upbeat person, yet the diagnosis and constant care of my ESRD led to several dark days and melancholy thoughts. There are a few strategies I have developed from personal experience that might be helpful to you in maintaining the outlook of a shiny happy person.

Get in touch with a Higher Power. No, not your governor. If you, like the band R.E.M., are losing your religion, this won’t help you. But if you are, or ever have been a person of faith, there may be no better time to ratchet up your belief system. Reconnect or deepen your involvement with your church, mosque, temple or synagogue. You’ll be stunned at how supportive a caring body of believers can be. You might even find a kidney donor!

Get up, stand up. Without trying to sound like Dr. Wayne Dyer, every morning when your eyes blink open you have a choice: you can choose to get out of bed happy and ready to attack the day, or you can crawl out ill-tempered and bemoaning your cruel fate. Choose the former. The mind can be a terrible thing to waste; don’t let it lay you to waste.

Stay engaged in life. I always have been something of a clothes horse. These days, even though I have fewer occasions to leave home, whenever I do go out – even for an appointment with my nephrologist – I try to clean myself up and dress like I’m going to a party. I also schedule regular visits to my barber, Bill, because if “your hair ain’t tight, it ain’t right.” In other words, I try to maintain the same lifestyle I enjoyed before kidney disease became my permanent companion. If you look good, you tend to feel good. Don’t change your routine. The activities and hobbies that gave you enjoyment before your illness probably still will. If you have to force yourself to stay active, do so – it’s worth the effort.

Don’t block your blessings. Don’t be afraid to ask for help when you need it, and don’t be resistant to accept assistance when it’s offered. Family, friends, even total strangers –are remarkably willing to serve as the support system for someone in need. And who are you to deny somebody the opportunity to feel good about themselves for performing a mitzvah?

Seek out comrades in kidneys. In 2011, I attended my first convention of the American Association of Kidney Patients (AAKP), and I often visit dialysis clinics just to talk to patients (with the permission of the clinic supervisors and patients, of course). These events give me direct contact with others who completely understand and relate to everything I’m going through.

Remember that old quote, “I cried because I had no shoes, until I met a man who had no feet?” Callous as it may seem, placing yourself in the company of other people with CKD can have the side effect of making you feel better about yourself. No matter how sick or woebegone you think you are, I guarantee you will find somebody who’s got it worse. At the AAKP gathering I met kidney patients who had been on dialysis for 20, 30 years or longer or have had multiple failed organ transplants and still are leading positive, productive lives. Makes you think.

Write it down. When one of my magazine editors asked me to write a first-person account of my ESRD diagnosis and treatment, I resisted the idea harder than Lady Gaga opposes good taste. Turned out to be the best move I could have made. That article, and the positive feedback I received from it, inspired me to launch my first blog, “JK – Just Kidneying,” to chronicle my journey with kidney disease. It can be a cathartic experience to
describe in writing how CKD has affected you. If you’re uncomfortable blogging about it for public consumption, keep a journal for your eyes only. You might consider this exercise: Every so often, make a list of things for which you are thankful. If I wrote such a list today, my top five would be:

  1. A loving God who guides and protects me
  2. The most amazing and supportive wife any man could hope for
  3. Hundreds of relatives, friends and colleagues around the world who pray every day for my continued health and a kidney donor
  4. A roof over my head, heat and air conditioning, and a kitchen stocked with healthy food.
  5. You, for reading this.

Cherish Life. Cherish this life you have, kidney failure and all. Remember to laugh at yourself. Live life as if tomorrow will be your last day on earth; one day, you’ll be right.

And don’t worry…be happy.

You can find the article at:

I have to say I’m smiling now and not just because of the article. There’s a tweet chat session about CKD coming up and another radio interview.  Maybe, just maybe, I will be able to accomplish my goal of getting the book into the hands of every newly diagnosed CKD patient before they leave their nephrologist’s office on their first visit.

Until next week,

Keep living your life!

Too Comfortable?

I had today’s blog practically completed in my  mind when I ran across this essay on The New York  I’ve repeatedly argued that you have to be able to talk to your nephrologist and dietitician.  I’m always questioning if I can be comfortable with my own doctors, but maybe I’m placing too much emphasis on this. I have a strong belief that things happen for a reason, even if we don’t know what that reason is.  Is that why this essay popped up just as I was starting today’s blog?  Read it and decide for yourself.

Downside of Doctors Who Feel Your Pain

Published: October 31, 2011

When I started my medical internship, my father the doctor told me that, when he was an intern, the competence of his colleagues was inversely proportional to how much their patients liked them. My heart sank. I had the likability market covered.

 You wanted eye contact? I could give you eye contact. You wanted someone to nod and say, “I understand your pain”? Empathy may as well have been
my middle name.But actually tending to the acute medical issues of sick patients in the middle of the night? Interpersonal skills alone were not going to cut it.Medicine, like education, business and fashion, is subject to fads. Hormone replacement therapy. Radical mastectomy. Bloodletting.The latest? Breeding nice doctors. It’s all the rage.

A wealthy Chicago couple recently donated $42 million to the University of Chicago Medical Center for the creation of an institute to improve the doctor-patient relationship. Already many medical schools are changing their admissions process to weed out candidates who communicate poorly. And now, to become licensed physicians, medical students must pass a “clinical skills” exam assessing, among other proficiencies, how well they acknowledge patient concerns, ask about feelings and show empathy.

The ideal physician surely possesses both competence and compassion. But will our quest to eradicate the coldhearted physician know-it-all be
another fad with consequences we may later regret?

How do we even measure these skills? Those of us who have ever fallen in love with someone we once hated know that sincere empathy can take time
to discover. During one of my clinical training sessions, a patient told me no physician had ever made her feel more at ease. The next cautioned that I made too much eye contact, sat too close and “invaded” her personal space. After briefly feeling like a sex offender, I realized the process, though well intentioned, was flawed.

Proponents of weeding out students who lack interpersonal skills argue that communication errors are at the root of medical mistakes. But we have no data to suggest that medical students who sit close but not too close make any fewer mistakes than their less-communicative colleagues. That awkward medical student in the corner who obsessively follows a checklist may make fewer procedural mistakes than his charming friend who lights up the room.

In fact, qualities suggestive of extroversion do not necessarily track with leadership or altruism. Adam Grant, an organizational psychologist at the Wharton School of the University of Pennsylvania, recently led several studies suggesting that extroverts, when grouped together, competed excessively and undermined one another’s productivity. The introverts were better listeners and enhanced group performance. With the future of health care more uncertain than ever, do we want to be turning away these cooperative, albeit reticent minds?

I worry, finally, that this focus on interpersonal skills inevitably feeds our cost and quality crisis.

As a runner with serial overuse injuries, I am as guilty as anyone of conflating the most sympathetic doctor with the one who gives me what I want — for me, always an M.R.I. But in a culture that values novel technology above all else, undue emphasis on interpersonal skills may make it only more difficult for patients to discern good medicine from that which makes us feel most understood.

The beauty of clinical medicine is that we constantly question our latest wisdom. How we select and train medical students may be more difficult to evaluate than the effect of a vitamin supplement, but that does not excuse us from subjecting our novel approaches, including an emphasis on glad-handing patients, to the same investigative rigor.
I like to think my father was wrong about the relationship between clinical acumen and interpersonal skills. Regarding another piece of wisdom he shared, however, I’m certain he is right.

“Dad,” I often asked as a child, “who is smarter, you or Mom?”

“Well, Lisa,” he would answer, “there are different kinds of smart.”

You can find the article at:

Today is Halloween.  I’m not going to say it’ll be easy, but watch it with your little trick or treaters’ goodies.  As the single mother of two, I was always telling myself – pre CKD – that I was “saving” my children from the ill effects of all that candy by eating it myself.   It was faulty reasoning then and it’s faulty reasoning now.  Why don’t you make yourself the parent that takes the pictures of their costumes instead?  Your hands will be full, you’ll be occupied and maybe, just maybe, the goodies won’t be that enticing.

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


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.


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.”


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:
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!


Take Active Control

I have been explaining – in my book and in my life – that taking active control of your Chronic Kidney Disease is an absolute necessity.  Today, I ran across this press release that re-enforces my thinking.  I’ve already been to the website.  There is so much to explore that I think you should look at it yourself, but remember this IS a press release.

July 21, 2011, 11:27 a.m. EDT

Revolutionary Baseline E-Health Platform for Kidney Disease Launched Today by Shad Ireland Foundation

Innovative Empowerment Tool Tackles Compliance, Potentially Saves Millions to U.S. HealthCare System


Baseline, , a technology driven e-health platform designed to empower millions suffering from kidney disease, was officially launched today by the Shad Ireland Foundation. The online platform, a proprietary technology funded by a grant from AMGEN Medical Education, offers solution-based tools and health care resources for individuals via the internet and mobile devices. When utilized, the Baseline solution has been shown to improve outcomes and compliance while helping patients create stability and rehabilitation in their lives.

Created in response to the rising number of individuals suffering from kidney disease and its precursors — diabetes, obesity and high blood
pressure — Baseline’s comprehensive solutions educate, engage and  empower the end user to take an active role in their health care. Individuals with Chronic Kidney Disease, (CKD), End Stage Kidney Disease, (ESRD), and kidney transplant recipients can easily monitor their health, tracking key indicators, nutrition and exercise, plus receive life saving information regarding the disease 24 hours a day.

“People lose hope and let go of their life goals when given a kidney disease diagnosis,” said Shad Ireland, Executive Director of the Shad
Ireland Foundation. “We want to show them that a diagnosis is not a death sentence. With Baseline, our goal is to offer inspiration and
tools for healthy living. Using my 29 years of successfully living with this disease and other success stories as examples, we can inspire,
engage, educate and empower people with kidney disease to stabilize their health and achieve their dreams. Baseline has the potential to
help millions of people live a better life. I’m living proof.”

Results Through Improved Outcomes & Compliance

Modeled after Ireland’s positive results in living with CKD, and extensive medical research on compliance, Baseline is the first-ever technology driven solution targeted to the renal community. A potential answer to issues of compliance, outcomes and quality of life, Baseline promotes stability by managing key indicators, including nutrition and exercise. Patients can track lab values, and other indicators working in tandem with their doctors to take an active role in their healthcare by controlling the disease. Baseline is also the first resource designed to address the government-mandated conditions for coverage for patients awaiting kidney transplants, providing critical information and tools to those in need.

While the average American with chronic kidney disease is hospitalized four to six times per year, since taking active control of his healthcare, Ireland, a triathlete best known for successfully completing over 20 Ironman competitions, has only been hospitalized three times in the past nine years. An active athlete, Ireland is currently riding stages of some of the sport of cycling’s toughest competitions as part of his Take on the Tour Project, , including the Tour of Colorado and the Tour of Utah, as well as running this year’s New York City Marathon. Ireland is an example of the positive results that are possible from an engaged and educated patient.

“What Shad has shown us with the new Baseline tool is that physical  activity and regular, structured, measured, and quantifiable exercise are really the keys to getting kidney disease under control,” said Dr. Tom Pintar, Board Certified Nephrologist and Medical Advisor to the Baseline program. “In addition, this e-health platform has the potential to improve overall quality and quantity of life, which over time can lower healthcare costs. Considering our current health care crisis, it’s an important issue for our country and around the world today.”

New Technology Creates Easy to Use Compliance Tool

The proprietary Baseline e-health platform, created in cooperation with some of the best and brightest minds in technology, is based on Shad
Ireland’s life experiences. Working with the team, Ireland shared the lessons learned from his 29 years of dialysis to help create a comprehensive tool for other kidney disease patients and those predisposed to developing a kidney diagnosis.

“Shad has drawn from his life experience to create an intelligent application of technology and media that offers life enhancing resources and information to people who need it,” said Rey Ramsey, Chairman for Technet. “Baseline offers the best solution for healthcare outcomes and
compliance. I believe it will make a significant difference and improve the quality of life for patients living with kidney disease.”

The Baseline e-health platform also includes a social component providing patients an opportunity to interact and share information. The   ground-breaking platform is a benchmark case study of how non-profit and for profit companies can combine forces for the common good of the
patient and is a cost-effective tool that uniquely engages the user while also providing resources to empower individuals to take a more active role in their health care.

Here’s the URL for the press release:

I find myself becoming very excited about this site since Mr. Ireland’s thinking is so consistent with my own, but urge you to decide for yourself if this is for you.  I’ll let you know what I decide for myself in the next blog.

Until then,

Keep living your life!

Published in: on August 5, 2011 at 12:11 pm  Leave a Comment  

The 24 Hour Urine Collection Revisited

I’ve just realized I’m a tweaker.  Let me explain:  I’m not a druggie, but rather someone who tries to finesse instructions in the way that best suits her.  I know, I know.  You’re asking yourself, “What is she talking about?”  You see the title of today’s blog and already know it’s 24 hour urine collection day for me. I woke up at 6:30 today after desperately trying to stay asleep and out of the bathroom until a more reasonable hour – say 7:30 – because I know I’ll have to get up a little bit earlier than I did today to complete the 24 hour urine collection tomorrow.  It IS a 24 hour test, after all.  I just wanted to sleep a little later and didn’t realize I could just start the collection period a little later until I read the 9/5/09 blog of Carolyn Cooper, MPH, RN at:

This is the most complete explanation and set of instructions I’ve uncovered since I first began exploring this test and how to do it.  If you remember (and even if you don’t), I’ve mentioned that sometimes the instructions your lab or doctor’s office give you are simply not clear or thorough. I think we can thank Ms. Cooper for taking care of that problem for us.

24 Hour Urine Collection: How to do it and Why it’s done

What’s the Purpose of Urine Testing?
An incredible amount of information can be obtained from examining a urine sample. In fact, over 100 different tests can be performed on a single specimen.Most of the time a simple “quick catch” specimen of urine (voided into a cup) is sufficient for a basic urine test. Urinalysis results may reveal problems with the body’s electrolytes or hormones, the presence of infection, dehydration, evidence of microscopic blood (that can’t be seen with the naked eye), drug levels, or problems with kidney function.Why a 24-Hour Urine Collection?
A small sample of urine isn’t always sufficient. In addition to blood tests, physicians will order a 24-hour urine collection if they have reason to be concerned about overall kidney function. This test typically focuses on creatinine clearance, sodium, protein, and urine osmolality. Other substances may be examined in a 24-hour collection; for example, hormone levels, urea nitrogen, or copper. The volume of urine that is voided during the 24-hour period also yields important information.  The laboratory will make calculations based on your 24-hour (or 12-hour) urine collection that will help determine how well your body is clearing waste products via the urine.  This finding will be compared to a blood test that measures how much of the waste products are circulating in your blood.

If your physician hasn’t explained WHY he or she is requesting the 24-hour urine collection, ask for details. As a patient, being informed is one of your fundamental rights

Tips for Collecting Your 24-Hour Urine Specimen
A 24-hour urine collection is easy to mess up, and that can be very frustrating. Just one moment of accidentally forgetting to collect and save the urine during the 24-hours ruins the test, and the collection might have to start all over again . . .

Before the test: Your doctor’s office will provide you with one or two brown plastic collection jugs and written instructions. Certain tests may require that urine be placed in a “double container” or that a preservative be added to the collected urine; you’ll be given the supplies and containers appropriate for your test.What you need from your lab or doctor’s office:

  • Special instructions for the test and a lab sticker with your patient information to attach to the collection container(s).
  • Collection container(s)–depending on the size of container the lab stocks–you may receive one or two of these jugs. They are made of heavy brown plastic, not just any container will do for this collection, so be sure to use the container(s) provided.
  • Nice to have items–I’d ask for these if they don’t offer them to you. For men: A plastic urinal to void into. For women: a plastic “nun’s hat” to set in the toilet to collect the voided urine. If you don’t have these items, it’s okay to void into a bedpan, large plastic cup or bowl, etc. You will pour the collected urine into the brown collection container after each void, so it’s nice to have something that pours easily.
  • You’ll also need:a way to keep the collected urine cool during the collection period. One of the most common ways to do this is to set the brown urine collection jug in larger container filled with icy water (an ice bath). An ice chest (cooler) is another option. It’s also possible to place the collection jug in the refrigerator, although there are many reasons to make this impractical.
When to begin?
 Find out in advance when and where to return your 24-hour urine collection. This information will help you decide when to begin, because if the lab or physician’s office isn’t going to be open when you finish the collection, you’ll have to keep the sample in a refrigerator, cooler, or in an ice bath until you can turn in your specimen. It’s often suggested that you begin a 24-hour collection first thing in the morning–but that is certainly not required. However, it is essentialthat you make note of the date and time that the specimen collection was started and stopped. This information will need to be recorded on the specimen container (and/or label).Ready to start?

Completely empty your bladder by voiding into the toilet and flushing–DO NOT save this first urine sample. The first time you empty your bladder you are flushing away urine that has been building up in your bladder for several hours or more.  That hours-old urine will yield incorrect results if we collect it for our 24-hour specimen.  We want to start with an empty bladder to collect only the urine our body makes during the 24-hour-period. Record the start time and determine your stop time. 

All other urine during the 24-hours will need to be saved and poured into the collection jug. It’s helpful to use the same bathroom all day long and post a note with the start/stop time to help remind you to collect all of your samples. Replenish the ice in the basin surrounding your collection jug from time-to-time in order to keep the specimen cool.Ending the collection:

  • When the 24-hour-collection period is ending, make a last effort to urinate–even if you don’t have the urge to “go,” you will still be able to produce an ounce or two of urine. Make sure your collecton jugs are tightly capped and labelled with your name, date of birth, collection date and start/stop times.   (Note: If you weren’t given a label for your specimen jug, make oneand tape it securely to your jug.) Keep the specimen in the ice bath, cooler, or refrigerator until you are ready to return it to the lab or doctor’s office. Place your specimen jug(s) in a sturdy plastic bag for easy carrying. (Your specimen will be just fine without being on ice while you return it to the lab or doctor’s office—as long as you are not exposing it to heat for a prolonged period of time.)What If . . . ? Special circumstances .                                                                                                                 
    You filled up the container the lab provided, but your 24-hour-collection is not yet complete.Use a very clean glass or plastic container to continue collecting your urine.  Your brown jug protects the collected urine from light–so if you have to use a transparent collection bottle, be sure to guard it from the light along with keeping it chilled. Using an ice chest would be a good strategy for you in this case–if that’s not possible, cover the transparent container with a brown paper bag to protect it from the light.  When you return your sample to the lab, keep the transparent container in a brown paper bag, or some similar technique to keep it protected from the light.
  • You have started the 24-hour-collection, but find you need to leave the house for several hours.  Take a backpack with you, a plastic bottle with a secure lid, and a large ziplock bag full of ice.  This will allow you to carry your collection items discreetly.  For ladies, a wide mouthed plastic container will allow you to urinate and pour the sample into your capped bottle.  Your ziplock bag of ice will help keep your sample cool while you are on the go. I know this is a rather bulky idea, but the best I can come up with at the moment.
  • For patients with urinary catheters. It would be preferable to start your collection with a fresh catheter bag in place–if that’s not possible, it would be nice to clean the existing bag–at least remove the bag from the catheter and give it a good rinse out.. Begin your collection by completely emptying the current catheter bag and flushing the accumulated urine.Record this as your start time. During the remainder of the 24-hour-collection period, empty the foley bag into the brown collection jugs at regular intervals and keep the collection jugs in the refrigerator on in an ice bath just as anyone else would do. At the designated stop time, empty your collection bag for the last time.
  • Urine becomes mixed with feces or blood. Do not empty any urine that has been contaminated by feces or menstrual blood into your collection jug. Make note of the time and stop the collection. Contact your lab or physician’s office to inform them. In some cases, if enough time has elapsed (12 hours or more), your physician may give the go-ahead to stop the test early. Possibly, you may be asked to start all over again.
  • Patients who are incontinent (cannot hold their urine).  Certainly your physician may not realize (or remember) that a particular patient struggles with complete or partial incontinence.  Do let your doctor know about incontinence issues.  Perhaps the 24-hour-test will be impossible because of complete incontinence; perhaps they might recommend a bladder catheter for the test, or perhaps they might allow a shorter period of time (12-hours or thereabouts) for the urine collection. 
  • “Oops! I didn’t collect every void during the 24 hours!” If you forget to collect all of your urine, the test results may be inaccurate. Talk to your lab or doctor’s office before disposing of all that you’ve collected. If you have already completed at least 12 hours of the urine collection, mark down the time of the last urination and keep your container on ice or in the refrigerator as discussed later in this article.  Talk to your physcian’s office or lab to let them know what you have been able to collect.  They should be able to use your sample and calculate the important information based on the number of hours you have collected–but it’s important that they know the correct number of hours when you turn in the sample.  It’s possible that you’ll be asked to start all over again, but there’s a good chance that they can use what you’ve collected and make adjustments to correctly calculate the results.
  • Why keep the urine specimen on ice?  The ice bath is just a technique for keeping the urine cool enough so that bacterial growth doesn’t overwhelm your specimen.  The ice bath should keep your specimen in the 40-45 degree Farenheit range as would your refrigerator.  Keeping a 24-hour-specimen in the refrigerator is really awkward and inconvenient.  Having your specimen container right there in the bathroom “on ice” is so much easier.
  • Other questions? Call your physician’s office or lab.

I realize I’d also forgotten the purpose of not collecting that first void of the morning until I read this blog.  There’s something about being reminded of what you know that’s almost as satisfying as learning something new – which is what I hope you’ve done today.

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

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)  

Not Again!

In one of those little flukes during which I didn’t receive my nephrologist’s report until a few weeks after the doctor visit and didn’t catch everything he said during the visit (yes, even after almost three years), I noticed a colonoscopy was recommended.  But I had one only eight years ago! When I called the nephrologist’s office to speak to his M.A. in an effort to find out why I needed this test, it was explained to me that the fatigue I’d been experiencing just might be from polyps.

That didn’t sound right to me so I dutifully made an appointment with the gastroenterologist, and while there, had a long, involved discussion with him.  He wisely allowed me to do most of the talking to see if he could get a handle on the nephrologist’s reason for wanting this test performed, but couldn’t.

Was it my failure to understand the M.A.?  Could be, but just to be certain AND to find out which drugs I would be allowed since I now have CKD  and was going to be “put out” – oh, Lord, I hope that’s nothing akin to being “put down” – for the experience , this specialist agreed to call the other specialist.

Here it is almost two weeks later and I’ve heard nothing from either of them.  Apparently, my nephrologist is on vacation and we’re waiting for his return. So, of course, I started researching on my own.  I still can’t quite figure out why I’m having the test since I couldn’t find anything about polyps contributing to fatigue in CKD patients (which doesn’t mean the information isn’t there – it may have been too technical for me to understand), but I did discover the following warning on the National Kidney Foundation’s site:

Oral Sodium Phosphate Safety Alerts

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy.

The warning relates to the use of bowel cleansing agents, called sodium phosphate (OSP) products as laxatives or in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. These products can cause phosphate nephropathy.

Oral sodium phosphates clear the bowel by making bowel movements frequent, loose and runny. These agents work by causing fluid loss so it is recommended to patients that they drink large quantities of clear liquids as part of the bowel preparation.
Symptoms of acute phosphate nephropathy are:

  • Lethargy
  • Drowsiness
  • Decreased urination
  • Swelling of ankles, feet and legs

Early on, people may not have any symptoms at all. Anyone at high risk for this condition should have their kidney function monitored by their doctor.

Visicol® and OsmoPrep® are available by prescription only. Other similar OSP products are non-prescription, and can be used as a laxative at low doses.

Children under 18 years should not use these products alone or in combination with other laxatives containing sodium phosphate. Others groups who are at risk for acute phosphate nephropathy are:

  • People over 55
  • CKD patients
  • People who are dehydrated
  • People who have bowel obstruction, delayed bowel emptying or active colitis
  • People taking medications such as diuretics, angiotensin converting enzyme [ACE] inhibitors, angiotensin receptor blockers [ARBs], and inflammation and pain relief medications such as nonsteroidal anti-inflammatory drugs [NSAIDs])

The FDA requested that the manufacturer of Visicol® and OsmoPrep®, Salix Pharmaceuticals;

  • Add a black boxed warning to the pharmacy package insert for these products
  • Develop and distribute a medication guide for patients that is easier for most patients to understand than package inserts
  • Arrange a post-marketing trial to assess the risks to patients taking OSP products

Non-prescription OSP products have a long history of safety when used as laxatives and will still be available over the counter. However, because of the recent warning by the FDA, those OSP products should only be used as laxatives and not for bowel cleansing. The FDA suggests consumers should get a prescription from a health care professional when thinking about having a bowel cleansing.

The U.S. Preventive Services Task Force (USPSTF) strongly recommends that clinicians screen men and women 50 years of age or older for colorectal cancer with one of several tests, including colonoscopy. If your doctor recommends colonoscopy, concerns about bowel cleansing should not prevent you from undergoing colon cancer screening. Colon cancer is treatable when the disease is caught early and the best treatment is to identify and remove precancerous polyps before they progress to cancer.

A high-quality and safe colon cleansing preparation is important for colon cancer screening using colonoscopy. There are other FDA-approved alternatives to OSP for bowel preparation prior to colonoscopy that may be safer for some patients, but may not always clean the bowel adequately. Patients should discuss the risks of the preparation and procedure, versus the benefits of the screening to determine the best bowel cleaning agent for their age, and risk conditions noted above.
More than 26 million American adults and thousands of American children have Chronic Kidney Disease. Most do not know they have this condition.

Date Reviewed: July 2009″

July, 2009, was 18 months ago yet I’ve found no updates anywhere on the internet.  Whether or not I’m satisfied with what my nephrologist tells the gastroenterologist or what the gastroenterologist tells me, I intend to bring this information with me to the gastroenterologist BEFORE the procedure and certainly bring it to the attention of the nephrologist.  After all, I am responsible for managing my own health issues.

Until Tuesday,

Keep living your life.

Published in: on February 18, 2011 at 9:59 am  Comments (6)  

Other Medical Issues When You Have CKD

It occurs to me that I’ve never included a sketch of the kidneys’ location.  This one is courtesy of  National Institute of Diabetes and  Digestive and Kidney Diseases, National Institutes of Health.  This institute is wonderful in allowing others to use their images and information as long as they are accredited.

Your kidneys, located in your body where the sketch demonstrates, are compromised.  That has a bearing on every infection, cold, surgery, disorder or anything else medical that may happen during your life. You need to be careful about any prescription drugs you may take. You need to read the accompanying literature very carefully to look for interactions. You have to read this material every time you obtain a refill since there may be new information about the drug since the last time you filled a script.

The idea is to be vigilant about prescribed drugs that may create some kind of side effect which may further damage your kidneys.  It’s a good idea to make certain your pharmacist knows you have CKD.  Naturally, you need to inform your nephrologist of any medications you intend to start or stop taking.

A case in point is erythropoietin [EPO]. This may be prescribed for anemia. The kidneys produce this protein which promotes the creation of red blood cells. A low red blood cell count may indicate anemia. Your liver also produces a small amount of EPO. All right, let’s say you’re not producing enough EPO and develop anemia.  Your nephrologist prescribes EPO injections.

However, EPO can worsen your HBP – which can both cause and be caused by CKD. Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension. Incidentally, low blood pressure is less serious than high blood pressure, but it still must be treated.

I’ll use my own situation as an example of how carefully CKD patients need to monitor their own health. I had a bladder infection, but didn’t know it.  I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a week and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

I have had non-nephrology doctors tell me ridiculous things such as there’s nothing wrong with an Advil here or there or that I needed more then five ounces of protein a day.  I used to argue with them until I realized that I am the one responsible for slowing down the deterioration of my kidneys.  I have the help of my nephrologist and nutritionist, but it is ultimately up to me not to blindly listen to a doctor’s orders.  I need it explained, I need to understand if this is safe for me, and most importantly, I need to speak up if I feel it is not.  You, too, need to be your own advocate.  Take a friend with you to your appointments if you need moral support, but do not let anyone – doctor or not – dictate to you.

Of course, you already know about not taking non-steroidal anti-inflammatory drugs [NSAIDS] like Advil, Aleve and Ibuprofen, much less aspirin which can have an effect on your blood’s clotting ability possibly causing bleeding and harming the kidneys.  But did you know that certain other over the counter remedies can also be harmful to your health as a CKD patient?

They may contain elements you should not be taking if you have CKD.  For example, Alka Seltzer or baking soda is high sodium, and you are already trying to control your sodium intake.  Then there are antacids which may contain milk of magnesia, which can build up in your body and cause neurological difficulties.   Food supplements or vitamins may contain potassium or magnesium. Even diuretics can damage your kidneys by causing excess sodium excretion.  Read the labels and, if you’re not sure, ask your nephrologist. As I discovered, it’s better to be a pain in that doctor’s neck than risk taking a perfectly ordinary substance that had become a threat to you since your kidneys are not working as they should.  It’s a good idea to avoid enemas and laxatives since they may dramatically and quickly change your electrolyte balance.

I’ll continue with this topic on Tuesday, but right now I’d like to wish those who celebrate Christmas, a very merry one tomorrow.  For those, like me, who celebrate Hannukah or those who celebrate Kwaanza, I hope it was a good holiday for you.  On a personal note, since everyone else in my family celebrates Christmas and I’m the matriarch, I get to fill stockings for them all, cook a ham for my son-in-law, rib roast for my sweetheart and turkey for me.  I hear one of the kids is bringing home made egg nog (can I have that?  I’ll look it up right away!) and another is making Grandma’s recipe cheesecake.  Oh yes, there will be some fruits and veggies, too.  So, it’s true, some holiday celebrations do revolve around food!

Until Tuesday, keep loving your life.

The End of the Nephrologist’s Report

You’re right.  This was a long report.  It actually is only two pages, but in blogging, it needed to be chopped into sections or I would have lost most of you a long time ago.  I’m surprised at how much I get out of reading it each time I work with this report.  I thought I had it practically memorized by now, but I keep noticing new information.  Well, not new, I’ve read it before – but information I’m first paying attention to.  So let’s finish up this report.

The IMAGINING STUDIES section was followed by the nephrologist’s IMPRESSIONS, which started out with “Chronic Kidney Disease Stage 2, estimated glomerular filtration rate of 60-5 mL/min, likely secondary to presumed hypertensive nephrosclerosis.”  That means kidney damage due to HBP. (Even though the high blood pressure had been treated for the last 20 years?  I did ask and was told simply, “Yes.”).

Ironically, the next item in IMPRESSIONS was “Hypertension, well controlled on current medications.”  (I asked the same question  again and was told “yes” again.) Then there was mention of the cysts. Surprisingly, I also had iron deficiency without anemia.  I somehow never connected my fatigue with kidney disease, but I was learning. My history of dyslipidemia [high tryglycerides or cholesterol or both] and my nephrolithiasis [kidney stone] were mentioned, too.

Finally, the nephrologist’s RECOMMENDATIONS. These included starting ferrous sulfate [iron] 325 mg. p.o. [by mouth] at noon.  Why noon? It seems you’re meant to take this with a meal to minimize the chance of stomach upset. I suppose that made sense, but I was alternately teaching and acting at night, so noon was not a meal time for me.

The vitamin C I had been taking was eliminated since it has high oxalate [combines with calcium to form kidney stones] consistency which could cause further nephrolithiasis.

I had read of Omega 3 therapy being helpful in retarding the development of CKD and discussed this with my doctor. In this section of the nephrologist’s report, he agreed that I could safely take 1200 mg. one tablet p.o./b.i.d. [twice a day].

Here’s a tricky one: I was to continue drinking at least 64 ounces of fluid  [eight cups] a day but not more.  Yes, I did start keeping track.  I knew a cup of coffee was eight ounces, and I had two a day.  That left me with 48 ounces which I kept to water unless I had four ounces of soy milk with my morning cereal. But then I discovered that some things I’d always thought were solids are really liquids.  I’ll be writing about this in more depth in a later blog since it requires an extensive explanation.

The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function. Below that were my provider’s name and other information identifying the electronic file.

Although I had carefully looked up every term I didn’t know and had sat with this report for days while I did, I felt like I’d been run over by a truck – a big one.  That’s when I decided (yet again) I had to research everything I could about this disease.  I read, I Googled, I sat in the library right next to the reference librarian, and I made a pest of myself at my doctor’s office via phone calls and unscheduled visits – not the way to endear yourself to someone you need on your side.

In an unusual way, this paid off.  I discovered I couldn’t find what I wanted in one book, and it took too long to extract one bit of information from this source and another from that.  I didn’t see the purpose of every newly diagnosed CKD patient hoeing the same row.  I decided to take my doctor’s challenge: I would write that book I needed about early CKD.  That book is now in final edits and will be available in early 2011 (if I have my way).  Gee, shameless, blatent self promotion feels so good.

On that happy note,

Keep loving your life.

Employers are Not the Only Ones Who Ask You to “Pee in the Cup.”

We’re not quite done with the urine tests.  Chances are, while you might not have gotten to NYC’s Broadway to see “Urinetown,” you’ve been asked to “pee in the cup” by more than one prospective employer. That’s also part of the urine test for CKD patients.

The Random Urine Tests

When you read random urine test, think, “pee in the cup.” You’ll be asked to do this, as well as give blood, when you bring your 24 hour urine collection to your lab. Oddly enough, in this case random refers to a special time of the day, namely the time of day you’re producing a urine sample. While these are not as accurate as the 24 hour urine collection tests we discussed on Friday, they do allow your doctor to see how much of each element is being secreted when you urinate.

To illustrate the importance of this test, one summer I’d suffered infection after infection for a total of five.  This necessitated quite a few random urine tests to watch the white blood count.  When that count was elevated, an infection was present.  When it wasn’t, the antibiotics had accomplished their task and I was finally infection free.  Here are explanations of some of the specific tests.

2498 deals with the creatinine that is voided in the urine at one specific time. In other words, this test measures the creatinine in one urine sample rather than during the entire 24 hour collection period.

209245 Immunofixation, Urine, Random is used to assess the state of your immune system. (Notice this was also tested in the blood.)

9929 Microalbumin, Ur, Random, Normal tests for micro, or very small amounts, of albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.

209198 Protein, Electrophoresis, Urine serves the same purpose as the blood test for this. It separates the different components of protein in your urine, rather than in the blood.

209245 Immunofixation, Urine, Random identifies the proteins found in the test explained above.

2482 Protein, Urine Random, Normalized is similar to 2043 (Protein, Urine Timed). The difference is that this measures the protein in one sample of your urine, rather than the entire 24 hour collection period’s urine.

And then, there’s 203405 Urinalysis, Complete which can’t be part of the 24 hour collection due to the additives used to preserve the specimen.  It is complete in another way. The urine is visually examined for color, transparency and odor.  This is what you usually hear about as the urine test for drugs, but this also may catch signs of different diseases.

Food and drugs can change the color of urine, but so can concentration or dilution of the urine. CKD patients are instructed to drink 64 ounces of liquid a day.  Too much will make the color of your urine very light. Not enough will cause your urine to become a deep yellow.

Cloudiness, rather than transparency, could mean kidney stones or the beginning of a phosphate or urate which may indicate a  problem. Urate is a salt of the uric acid whose presence could indicate gout. The presence of either element could also mean that the sample has been unrefrigerated for too long or that a bacterial growth is present. Either way, it’s an indication that more testing is needed.

While unusual urine odor could be due to a plain, old, ordinary urinary tract infection, it might also be caused by ketone bodies in the urine. When the kidneys or liver break down fatty acids for energy, these are the by products which are used by the heart and brain for energy. There could be any number of causes for their presence, but the important part is that diabetes may be one of them.

Just a little bit more of this. The second part of the Complete Urinalysis deals with specific gravity of the urine which has been tested since abnormally diluted urine may indicate kidney disease. High specific gravity may indicate diabetes, which is one of the primary causes of CKD. My reaction to this was a big question mark about just what gravity was in the first place. It turned out to be the concentration of particles in the urine. Evaluating this helps evaluate your body’s water balance and urine concentration.

The biochemical part of the urinalysis tests leukocytes, nitrates, Ph, proteins, ketones, urobilinogen, glucose, bilirubin, blood, and hemoglobin. To be as succinct as possible: leukocytes are one of the white blood cells that fights bacterial infection; nitrates present in the urine indicate bacteria and possibly diabetes; high Ph may point to an over consumption of protein (I’m limited to five ounces a day) or CKD while low Ph may point to diabetes or dehydration.

Protein in the urine, or proteinuria, is one of the signs of kidney disease. Ketone presence might be caused by uncontrolled diabetes. High urogilinogen levels could be an indication of anemia. High glucose levels might be the result of diabetes. Bilirubin in the urine could be the result of liver failure. Blood in the urine may indicate some kind of kidney disorder.

Hemoglobin in the blood may be a result of the breakdown of red cells. Hemoglobin in the red blood cells is what carries the oxygen through your body. These are not the only causes for finding these elements in the urine. Should you decide you’d like to know more, try one of the online medical dictionaries.

The final part of the urinalysis is microscopy and sediment. The sediment part refers to the particles that settle to the bottom when urine is allowed to stand for several hours and then examined under a microscope.

Albumin, stagnant urine, cellular debris and low urine filtration rate can cause a protein cast in the urinary sediment. Proteinuria can indicate kidney disease – as you probably remember.

Urinary sediment doesn’t usually contain crystals unless alkalization is present. As mentioned before, high Ph – or alkalization – may indicate kidney disease. But, then again, it may indicate not enough water intake or high water elimination.

There should be no micro-organisms in the urine sediment, but their presence may indicate a urinary tract infection – which is bacteria based – or kidney infection – which is yeast based. Other micro-organisms that may be detected are parasites, spermatozoa and mucus.

Now that the explanations of the tests are complete, you’re probably aware of how many times I wrote may indicate and can cause. Understanding your blood and urine results is a more precise science than can be explained with a boiler plate list of what causes which problem or what each test may mean.  Your doctor will be able to understand how the results of one test – or even one part of one test – implicate the other tests. The tests produce the pieces of your evaluation.

It’s almost like a thousand piece jigsaw puzzle; some people are good at putting those together, others aren’t.  Your doctor is the one who’s good at it, although it doesn’t hurt to have a passing knowledge of just what is happening in what flows through your body.

That’s enough for now.  All those numbers are making my head hurt.

Until Friday,

Keep loving your life!

Published in: on November 9, 2010 at 7:40 pm  Leave a Comment  

I Become Even More Frightened

You know, there are organizations (see the blogroll on the right hand side of the page) which can offer us support. Being no fool (or so I thought at the time), I immediately contacted the American Association of Kidney Patients asking that they send me whatever they had.  And they did. And I started quaking in my boots again. 

Being the wonderfully informative – even if I wasn’t ready to accept or even understand the material – organization that they are, they sent me pamphlet after pamphlet: “Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function,”  “ When Your Loved One is Depressed,”  “Understanding Depression in Kidney Disease,” (two on depression?  Did that mean I was bound to become depressed because I had CKD?), “Understanding Anemia in Kidney Disease,” and “Understanding High Phosphorus and Your Treatment Options.” I haven’t even included the ones about dialysis or transplantation options.

I later learned that depression may be a part of the stress of becoming a CKD patient.  Overnight, you become a special person with special needs.  I asked so many questions of my nephrologist that he feared this was what was happening to me.  It wasn’t, but it seems it could have been. 

You have to think about everything: how much of each kind of food, which foods at all, over the counter medications, exercises, sometimes even integrating rest periods into your day.  There are the constantly changing vitamins and minerals; you need to stay in balance and that can change every time you read the results of your blood and urine tests.  Maybe you need more vitamin D this quarter or less calcium.  It’s so individual.  Sometimes, this depression can be caused by something as simple as not being about to admit you are overwhelmed and need help.  You need to relearn that you are more than this disease.  

The steps to accepting this diagnose reminded me of those dealing with death.  The first is shock.  Yes, that was me.  I was dumbfounded.  Then there’s grief.  I think I may have skipped this step by researching instead.  After that, there is usually denial, but again, I was so quick to research that I found myself not grieving, but dreading what I thought was going to be imminent dialysis. 

I remembered reading somewhere that denial does have a purpose as long as it is not never-ending. It helps you cope with this news until you can deal with it.  Just be sure you don’t use denial as a reason for non-compliance with your nephrologist’s and nutritionalist’s directions. It was the research that led me into acceptance.  This was my life and I would learn to adapt to it because I didn’t like the alternative.

It took me about year to pick up these pamphlets again after initially reading them. They do not go into that much depth, are obviously meant to be helpful, and are gentle introductions to the topics.  But I still wasn’t ready.  I put them away and ignored them until I decided to write this book.  Then I looked at them a third time – and still felt the dread that this was going to be my future. For all the information available to me about my disease and all these educational booklets, I couldn’t help thinking that depression and dialysis or transplantation were going to be my immediate future.

I was an optimist by nature; why all the pessimism? I believed in learning everything I could about anything that affected my life; why the rigid attempt to shut this out?  I had a mental image of a large hand being held up in the universal “STOP” mode in front of this information.  Maybe I needed a less official approach.  After all, the American Association of Kidney Patients calls itself “The Voice of All Kidney Patients,” and I had never been a joiner.

I’ll tell you the other avenues I tried next week.  Enjoy the weekend!

Published in: on October 15, 2010 at 1:35 pm  Comments (2)  

The Last Part of The Doctor Visit Report

Not only did we cover the country with comments, but the world.  If you take a look, you’ll notice one there from Italy.

I’ve already met with one publisher and have a telephone conference coming up with someone who is familiar with the printing industry and just wants to help.  I am so gratified that there are others out there who want to see this material shared as quickly as possible.

There’s one more part to The Doctor Visit Report, so let’s get to it:

The Assessments following the  section discussed in the last blog  intrigued me because they all began with numbers, which I later discovered to be diagnosing codes. At that point, they were more of the mystery my health presented to me. I was lost in more numbers, even though the words next to them should have made the codes clear to me.  I recognized hypertension and right shoulder pain, but should I be as worried as I was by hyperlipidemia (I needed to get home and research this), renal (kidney!) insufficiency, and fatty liver?  This last one was somehow offensive, as if my obesity were being rubbed in my face.

I looked at The Plan. What? Now I might have rotor cuff disease, too?  Why couldn’t I just have a sore shoulder? How did the suspicion of one disease lead to the suspicion of all these others? I was to see my old friend, the orthopedic surgeon about this. That I liked.  This was a surgeon who didn’t believe in cutting unless it was absolutely, positively necessary.

I was finally able to figure out from the plan that hyperlipidemia is high cholesterol. I was already taking Lovastatin for that, so it was just going to be retested in three months.

Then I saw it: “Referred her to Nephrology for consultation treatment.” I was going to see a nephrologist, a doctor who specialized in kidney diseases and high blood pressure.  I had both. My senses started tingling; I was sure this meant death (I just didn’t realize it meant eventual death, the same kind every human faces). I was sure this meant immediate dialysis, but I didn’t know exactly what the word meant.  I just knew I had a colleague who went to a dialysis center several times and week and died anyway. I had to stop this right now or I’d paralyze myself with this out of control fear. I had to educate myself about this nephrology stuff.

I barely noticed that the fatty liver might be remedied by a low fat diet. I was too busy being monomaniacal about renal insufficiency.  Later, in the Follow Up and Labs section, I noticed I was to have a follow up in three months after another CMP (Complete Metabolic Panel) and Lipid Panel and, of course, a visit to my friendly, neighborhood nephrologist. The referral for this specialist was here, too. It was also noted that no injections or prescription were given at this visit.

I asked the very few questions I could formulate. My poor doctor wanted to help so much, but most of these questions dealt directly with renal disease and she couldn’t answer them. However, she somehow maintained an encouraging attitude which helped calm my internal furor enough to allow me to make the call, the one I dreaded, to the nephrologist for an appointment.   

Great cliff hanger, huh? More, next time.

Published in: on October 12, 2010 at 2:03 pm  Comments (1)  

The Doctor Visit Report

We need the best working relationships with our doctors that we can have.  Cultivate that relationship and change doctors if you can’t seem to talk to yours or you only find out important information after the fact.  I’ve been diagnosed for just over two and a half years and have had two different nephrologists.  If, at some point in the future, I find I cannot work with my present nephrologist (although I really can’t see that happening), I have no compunction about seeking another highly qualified nephrologist.  The same goes for your family physician.

Being the thorough doctor that she was, my primary care physician sent me for an ultrasound to take a look at what was going on inside. This uncovered a mild fatty infiltration of the liver. Was I in trouble here, too, I asked? It seemed this is fairly common, occurring in almost 20% of the population and could be helped by losing weight: obesity is one of the most usual causes of this condition. The obesity handwriting was on the wall for me.

That one pound loss also seemed to have had a slight benefit on my BMI. It was enough to convince me I should really work on the weight.  Remember, I was still grasping at straws here. (I kept an eye on this in my doctor visit reports and saw right there – in black and white – that as my weight went down, so did the BMI and the blood pressure.)

I began requesting copies of my doctor visit reports, as well as those of my blood and urine tests so I could have my own – more thorough than previously – file at home and stay on top of whatever I needed to. I was feeling burned by my previous P.A.’s failure to pick up on the low readings for the estimated GFR and felt I had to be my own case manager.  I still do and find both the nephrologist and my primary care physician agree with me. Not a single doctor that I’ve seen for a test or a consultation has ever refused or been difficult about making certain I receive these copies.

Since they are so highly personal, I decided not to include a sample of the Patient Exam from my own files in this blog, but to describe one instead. My doctor visit reports, or Patient Exam reports, are usually several pages long and on my doctor’s letterhead. They start with the date and then my history: name; date of birth (DOB); age; medications and dosages (including supplements and over the counter); allergies; vitals – height, weight (ugh!), BMI, temperature, pulse, blood pressure; smoker or not; chief complaint (why I was seeing the doctor for this appointment); whether or not I had an Advanced Directive , a durable power of attorney for healthcare decisions or a health care proxy – in other words, you give someone else the power to make health care decisions for you if you can’t,  and, if so, what kind.  The History section was broken down into Pertinent Past Medical History; Surgical History; Family History; Social History including: alcohol, caffeine, tobacco and drug use; Number of Children, Martial Status, Sexual History; Education and Employment; and the number of times a week I Exercise.

Check you Patient Exam reports, which are sometimes called notes, as well as doctor’s visits reports .  It’s amazing what mistakes can creep in during the transcription stage. For example, I’ve never taught high school in my new home state, but these reports had me doing so for five years.  While it was just a simple transcription error, it completely obliterated my contact with asbestos that doctors know NYC school teachers were exposed to.  My doctors, especially the nephrologist, should know about my exposure to this friable substance since it just might have some bearing on the disease.

Time to make a request of you.  I believe I mentioned that this blog is in anticipation of a book I’m writing about the early stages of Chronic Kidney Disease.  I’m interested in YOUR initial reaction to your diagnosis.  It’s certainly just as important as mine. I’d like to include it in the book, even if we do anonymously.

Published in: on October 4, 2010 at 8:42 pm  Comments (10)  

New Doctors, New Information

Nearly 30 million people in the U.S. have CKD or nephropathy (slow deterioration of the kidneys) and that number is projected to increase by 7% each year.  That’s 13% of our country’s population. Now I am one of them.  40% of this kidney failure was caused by diabetes, although after having had diabetes for ten years or more.  Mine wasn’t.

Before my first appointment with the nephrologist, I amassed and read everything I could from the internet.  Some of it was contradictory, some of it was really old, some of it was too scientific, some of it seemed to be right on the mark, but all of it was confusing no matter how simplistically it was written. I had no frame of reference and needed help interpreting what I was reading.

I knew I would ask the nephrologist for some books that were neither too scientific nor too simplistic. That’s how I learned: I read books, even with the internet available to me. Sometimes, as in this case, I learned by writing a book about the subject.

So I confused myself many times over until I saw this nephrologist.  He did explain, but so quickly that – again – I couldn’t understand it all. He knew his stuff, that was abundantly clear, but his style was paternalistic while I needed a doctor who was interested in working with me rather than unilaterally taking care of me.

It’s a small distinction and I mean no disrespect to my first nephrologist; I just needed a different style of doctoring. Prior to having this disease sneak up on me, I may have been perfectly content with his style. Now I was nervous that my body wasn’t telling me everything and I wanted an active role in monitoring it.

Luckily, there was another doctor in the same practice that one of the nurses thought I might be able to work with.  She was right.  This nephrologist had the same information as the first one, but his style was more open to partnership with the patient rather than taking the sole responsibility for the care of the patient.

Many patients prefer the paternalistic type of doctoring and there is no shame in that.  It’s almost like a marriage: you choose each other based on your particular needs. The first nephrologist’s style and mine didn’t match at this point in my medical history, although they might have just a few months before when there hadn’t been anything seriously amiss in my body.

By this time, although I still had so much to learn, I’d already been to see the nutritionist associated with the practice.  She had started to teach me about potassium, sodium (which I already knew to avoid since I had high blood pressure), phosphorous and food units.  She also gave me something magical: a printed copy of the renal diet. Here was something I could relate to, something I could turn to constantly to look up whatever I wasn’t sure about, something I could carry with me as my security blanket until I got a handle on just what this chronic kidney disease was and how to deal with it.

This second nephrologists explained, and in all honesty I do believe the first one mentioned this too, that they didn’t really know how I got this disease which is so prevalent that more than 25% of Medicare, roughly 42 billion dollars, went towards its treatment. In fact, the U.S. has the highest rate of CKD with 210 people per million having it and two thirds of it caused by diabetes or high blood pressure.

Published in: on September 10, 2010 at 2:49 pm  Leave a Comment  

Preparing for the First Nephrologist’s Appointment.

There’s a theory that keeping the blood pressure under control can delay dialysis.  After all, the kidneys do release renin, the hormone that regulates blood pressure.  I’ve been on an ACE inhibitor for over 20 years, not knowing that this could also slow the progression of my CKD. I strive for 130/80 or lower.  Although, the medication apparently has done too good a job of this since I’m presently dealing with LOW blood pressure.  Through my research, I began to understand what hpb has to do with renal disease.

High blood pressure can damage small blood vessels in the kidneys so that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe hbp medication to prevent your CKD from getting worse too quickly since they reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.

What especially troubles me is that even a small amount of kidney dysfunction can double the risk for this sort of problem.  It’s been over two years for me, but I still have difficulty understanding that I am at risk for a heart attack or stroke. But what makes me angry is that now that I have CKD, my children have an increased risk of developing it.

I called and e-mailed family members, both closely and distantly related.  I found high blood pressure, high cholesterol, cancerous and benign tumors and Parkinson’s Disease, but nothing that affected the kidneys. This was becoming more and more puzzling, to say nothing of the panic I was starting to feel.

Didn’t people die from kidney disease? My younger daughter had just become engaged and my older one lived across the country from me.  Frankly, I just plain didn’t want to die.  I was frightened, so I started doing what I usually did when I was in a spot: research – something no one in a panic state should have to do. It colors your interpretation of what you read.

Meanwhile, my new family physician helped me find a specialist who was covered by my insurance.  I lived in Arizona but had a New York based insurance company, so I needed the help. I see the specialist twice a year.  It could have cost me hundreds of dollars each visit, but with the insurance I am responsible only for the minimal co-pay.  This is why it’s important to find a doctor on your medical insurance plan.

As it turned out, I hadn’t even known that this specialist was called a nephrologist, despite my English teacher knowledge of Greek (nephros) & Latin (renes) roots.  I began to wonder how my education could help me deal with this serious disease, IF it could at all. Maybe my computer skills were more important here.

Asking the doctor questions wouldn’t help me yet, because I didn’t know what to ask at this point.   Although, I did intend to comply with his office’s request that I bring either my prescription medication or a list of them with their specific names, dosages and frequency of taking them, as well as a list of all the natural or alternative medications I take.

I intended to also bring a list of questions with me. I knew that when you become nervous, all those pertinent questions fly right out of your head.  I would have offered my symptoms too, but I didn’t have any that I could recognize.  I’d already had my medical history faxed to the nephrologists and didn’t think x-rays of my previously broken bones would be of any help, so didn’t bring them.

If you do have some pertinent film such as an MRI or CAT Scan, it would be a good idea to bring it with you on that first visit. This is the place to mention that intravenous dye sometimes used with an MRI or a cat scan for contrast is not great with CKD, especially if you have stage 3 or higher. The ingested dye stays in your intestines, nowhere near your kidneys, so they are not a potential problem.

One thing I was absolutely sure I would be doing is taking notes so I could review them at home, maybe even ask for a sketch of where the kidneys were if it still wasn’t clear to me after it was explained.  As you’ll see, the best laid plans of mice and men (and with apologies to Mr. Shakespeare, women, too) often go astray.

What Is It and How Did I Get It?

When my family doctor told me I probably had a problem and it had to do with my kidneys, maybe chronic kidney disease, my first reaction was to demand in no uncertain terms, “What is it and how did I get it?”  Hence, the title of this blog.

There are many, many of us out there.  By us, I mean those who have chronic kidney disease. Friends, lovers, family of CKD patients can gain some insight into the daily travails of living with the disease via this blog, too. I am no expert, but I have read just about every book concerning this problem that I could find.  Of course, most medical texts are not included because I couldn’t understand them. Most of the kidney disease cookbooks aren’t included because I can understand a a heavy duty medical text better than I can a cookbook.  I even read memoirs and biographies to glean what information I could.

Surprisingly, very few of these books dealt with the early stages of the disease.  These are the stages when we, as sufferers, are most shocked, confused, depressed and at sea.  I didn’t want to read about transplants or kidney failure.  They scared me and I just wasn’t ready to learn about them.  I’m still not.

But I did want to know what was happening to me on a daily basis, what these tests where that were ordered for me, what their results meant and how I could use diet and exercise to help slow down this deterioration of my kidneys.  That’s what this blog is about.

I’ve researched enough material for a book in the two and a half years since I was diagnosed.  The date of my diagnose is easy to remember because it was just prior to my flying to the other side of the country for my younger daughter’s wedding showers.

I’ll tell you how I counted food units at her wedding and got a refrigerator in my hotel room to keep the foods I could eat.  I’ll tell you about manically walking all over Niagara Falls early enough in the day so I could get in the required exercise before it was time to shower and dress to give my daughter away at her wedding.

The more you know about chronic kidney disease and the more anecdotes you read about one person’s relationship with it, the more comfortable you’ll feel in the early stages of having the disease yourself.  I sure wish someone had blogged about it when it was new to me.

Published in: on September 3, 2010 at 5:13 am  Leave a Comment