Why Wait?

A few weeks ago, I received an email from Joe Russell. He works on health care policy issues for my Arizona Senator Sinema in Washington D.C., along with his colleague Sylvia Lee, policy advisor. He was letting me know both Sylvia and he would be in Arizona the following week, and holding a roundtable discussion with patients suffering from kidney disease, along with their providers, caregivers, and family members. They wanted to discuss a series of legislative proposals their office would be working on in the coming months, as well as gain a better understanding of the unique challenges patients with kidney disease face in Arizona. The National Kidney Foundation of Arizona recommended they reach out to me, given my work and experience on this topic.

Are you kidding, I thought. I’ve been trying to get someone in Arizona interested in the growth of CKD locally… and, of course, everywhere else, for over 12 years. Now, mind you, by 3:30 I’m exhausted (Damn chemo!), but I vowed to go even though it was later in the day (3 p.m.). And I did.

When I arrived, who did I see sitting at Senator Sinema’s table, but Raymond and Analyn Scott. They are the compilers of The 1 in 9 Tribe to which I had contributed a chapter. There were people from the National Kidney Foundation of Arizona, a transplant patient, my very own nephrologist (who is also Raymond’s) and Senator Sinema’s delegation.

Oh boy, I remember thinking, this is going to be good. And it was. Each person spoke to their own stage of CKD with Dr. DeSai (Raymond’s and my nephrologist) and the National Kidney Foundation of Arizona people speaking about all stages of CKD. I kept steering the discussion back to early stage treatment and awareness for all. It seemed all were in agreement with my ideas or, at least, they were interested.

But I want to let you know why I feel early intervention and general awareness are so important. This is a note I received from a reader.

”Please help. I just got blood results back from my yearly physical and saw that my eGFR was 55 and my creatinine was 1.09. After speaking to my GP she told me my results were nothing to ‘be concerned about’. Since the 2 above mentioned results were highlighted in red I figured perhaps I should ‘concern’ myself about it and research what it could possibly mean. I was shocked to read that it indicated kidney disease. When I told my doctor of my findings, she again pushed it off as nothing to worry about. Am I over reacting? Thanks for any help you can give me.”

Now we don’t know this reader’s age. That’s important because you lose one point off your Glomerular Filtration Rate every year once you hit the age of 40. For example, I turned 73 yesterday (Yes, it was a fun birthday with my family and friends despite the effects of chemo.). Subtract 40 from that and I have lost 33 points off my GFR simply by being alive and growing older. Considering the highest GFR is 120, although we usually use 100 for ease of figuring, my perfect GFR would be 87. But it’s not. It’s 55, so we know I have CKD, stage 3A just like this reader.

Nuts! I’m going on and on as if everyone reading this knew both what GFR is and the stages of CKD. Well, we’ll just correct that right now. According to MedlinePlus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health, at https://medlineplus.gov/ency/article/007305.htm.

Glomerular filtration rate

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

How the Test is Performed

blood sample is needed.

The blood sample is sent to a lab. There, the creatinine level in the blood sample is tested. Creatinine is a chemical waste product of creatine. Creatine is a chemical the body makes to supply energy, mainly to muscles.

The lab specialist combines your creatinine level with several other factors to estimate your GFR. Different formulas are used for adults and children. The formula includes some or all of the following:

  • Age
  • Blood creatinine measurement
  • Ethnicity
  • Gender
  • Height
  • Weight”

Nor do we know the reader’s ethnicity. The National Kidney Foundation at https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf explains why this is important:

“This is due to higher average muscle mass and creatinine generation rate in African Americans.”

So, why then, is it important to know if you’re only in stage 2 of CKD? Let me put it this way:

When I was first diagnosed with CKD, I was at a GFR of 39. That’s pretty low. Had I been tested earlier, I would have had more time to preserve more of my kidney function. While I’m now at about 55 GFR (just like my reader), it took years and years of hard work as far as diet, exercise, rest, sleep, avoiding anxiety, not drinking or smoking and making sure I paid special attention to my labs.

Imagine if I had known earlier that I had CKD. I could have started protecting my kidneys earlier, which may have meant I could avoid dialysis for longer… or maybe at all. It may have meant I wouldn’t reach the place where I needed a transplant, if I ever needed one.

If you are routinely checked via a blood test and urine test each time you see your family doctor – just like your heart and lungs are checked – you may be able to avoid being told you were in need of dialysis seemingly out of the blue. But you wouldn’t know to ask for these tests unless everyone is made aware of CKD and just how prevalent it is. Think about it.

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: http://well.blogs.nytimes.com/2011/10/27/teaching-doctors-to-be-mindful/?smid=tw-nytimeshealth&seid=auto

Until next week,

Keep living your life!