Incremental care and ET

Dr. Atul Gawande's article in The New Yorker
about "incremental care" should make all of
us with ET think about the care we need to
maintain quality of life ... and which health
care providers are most likely to provide it.

Dr. Atul Gawande has been making the media rounds recently promoting a concept called "incremental care," and I recognized at once that this is exactly the kind of care most of us with ET need more of.

Gawande notes that research and money tends to cluster around what he calls "heroic care"--months of the latest cancer cure, major heart surgery, organ transplants--the kinds of treatment needed to cure an acute problem and make it go away forever. As I researched Gawande's interviews and articles, it occurred to me that "heroic care" is the kind of care that spawns colored ribbons, 5K cure walk/runs, and singles out the brave "survivors." These "heroic care" efforts are great, and we all have friends and relatives who have benefited from them tremendously.

But we ET patients are never going to be "survivors." Barring an outright cure, we're all going to die with, if not from ET. So incremental care will continue to be an important part of our treatment, and I think we need to make sure that we get it by educating and enlisting our primary care physicians more.

Before I go further, let me emphasize that I support the work of groups like the MPN Foundation and research by big hospitals, which track and fund research into ET and other MPNs. Who doesn't want a cure? But until that happy day, we need to make sure that our quality of life remains as high as it can be.

And qualify of life is a major component of so-called incremental care. Incremental care is the periodic care you get from your primary care physician and others who help you manage chronic illness as it progresses. By way of example, Dr. Gawande explains that his own son had "heroic" heart surgery to correct a heart defect when he was a newborn. It saved his boy's life. It also left his son with some lingering  chronic problems. And Gawande says it was incremental care--the periodic intervention through regular primary care or pediatric visits--that has improved his son's quality and length of life.

The story of Dr. Gawande's son made me think about the kind of care we as ET patients get. Like most of you, I get quarterly blood tests. And, if most of us whose blood tests and other indicators are not doing anything scary, we see our hematology oncologists once or twice a year. Few of those hemos actually DO anything for us other than lay out the chemo choices when it's time and adjust doses. In fact, in reading comments on this blog and its corresponding FB page, it's pretty clear to me that a great many hematologists don't believe we have symptoms, and if they do, they don't have much to say about it.

Instead, it's our primary care doctors who actively encourage the types of things that the top MPN specialists tell ET patients to do to fight fatigue and other symptoms: Get exercise and fresh air, eat right, maintain a healthy weight, improve sleep, curb excessive computer time, have flu shots, and manage stress and anxiety.

So why can't a primary care doctor or smart nurse clinician take care of us just as well, with visits to the hemo only when the primary care physician feels things have progressed?

Moving my ET care to my primary care doctor occurred to me at my check-up in December, as I was thinking about alternatives to Obamacare. Specialists are expensive, and I'm looking for ways to economize on my health care if and when insurance becomes less available. I asked my family doc if she would take care of my ET.

"What would I have to do?" she asked.

I explained about the quarterly blood tests, the points at which chemo would be prescribed, and my preference for Hydrea (hydroxyurea) when the time comes because it works, it's cheap, and it has fewer side effects than Interferon. That might be years away. Why do I need to sit in the hemo-oncology office taking up time Dr. Blood needs to spend with people with acute leukemia and other blood diseases.

I could see her wheels turning, so I suggested maybe we talk about it again at my six-month blood pressure check in June. She said that would give her time to think it over.

Meantime, I pointed out that she, as my primary care doctor, was more likely than the hemo to see me for complications that might be caused by ET--ischemia in the extremities, blood clots, internal bleeding, or persistent headaches and ocular disturbances that could presage a stroke or brain bleed. My hemo only wants to see me if my platelets spike into the 900s. Plus my primary doctor would be the one who would be most likely to help separate problems that are related to ET from those that have other causes.

Am I encouraging everybody to quit seeing their hematology oncologists? No. Essential thrombocytosis is a serious illness, and at certain points specialist care may be critical to your survival.

But having ET is not an emergency. It moves slowly. And as it progresses, your primary care physician or nurse practioner might be the best person to help you manage your quality of life and the factors that could help you live longer through better general health. If you haven't clued your primary doctor into the ins and outs of ET, your next visit might be a good time to do so. Explain what you're doing to keep yourself healthy and ask for suggestions to improve symptoms. Your primary care physician can also give you good advice on some of those alternative treatments you hear about.

Meantime, be well!

Related: Dr. Mesa tells you how to fight fatigue

Related: Fatigued? You're not alone

Related: What ET fatigue feels like

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