Eleven years ago, on Groundhog Day, I was diagnosed with end-stage renal disease (ESRD; permanent kidney failure) and began dialysis. It seems like a lifetime ago and I’m grateful that the treatment exists to keep me alive. I don’t have any false notions about dialysis—it keeps me alive, and little more. I rely on a Chinese medicine practitioner to keep me well. Or as well as possible.
One of the more unfortunate aspects of ESRD are the co-morbidities and complications that go along with it. Increased risk of mortality is the big one, of course. But there’s also severe anemia, cardiovascular disease, hypertension, vascular access problems, infection, nausea, neuropathy, myoclonus, poor nutrition, chronic inflammation, gastrointestinal issues, and hyperparathyroidism.
And then there are the complications associated with dialysis.
Some of the co-morbidities and complications—almost constant nausea, anemia that goes from bad to worse, and neuropathy—I’ve just learned to live with. Others—anemia, hypertension, and hyperparathyroidism—are partially treated with prescription drugs.
At least twice a year I have a bout of extra severe anemia and I’ve lately hit just such a rough spot. Because ESRD is covered by Medicare in the US, the US Centers for Medicare & Medicaid Services (CMS) governs how dialysis is delivered in the country for everyone, even non-Medicare patients. One of the most useful metrics for anemia management is a patient’s hemoglobin level and the CMS protocol calls for hemoglobin to be between 10-12 g/dL. Not bad, considering a “normal” hemoglobin level for males in the general population is 14-18 g/dL.
In my particular case, when my hemoglobin falls below 11.5 g/dL, I can feel it and I start to feel extra special crappy. When it falls below 11.0 g/dL, I have a hard time breathing. Someone else may feel just peachy at 10.0 g/dL, but the sweet spot for me is 11.5-12 g/dL. Having been through 15-20 of these low hemoglobin cycles over the past 11 years, I know the numbers intimately and, based solely on how I feel, can usually come within 0.2 g/dL of knowing what the lab report is going to show. Once my hemoglobin is more than 11.5 g/dL, I’m functional and unable to discern the level.
My hemoglobin is currently 10.3 g/dL (my guess at my dialysis treatment yesterday was 10.4 g/dL). In November it was 11.9 g/dL; 11.4 g/dL in December; and 10.7 in January.
And here’s the problem. In November, at a hemoglobin level of 11.9 g/dL, I’m within the CMS protocol. Today, at a hemoglobin level of 10.3 g/dL, I’m absolutely miserable but still within the CMS protocol.
This is especially troubling because varying hemoglobin levels has been found to be a strong predictor of mortality in dialysis patients.
Every time my hemoglobin drops, I have a come-to-Jesus meeting with my nephrologist—whom I respect greatly and like a lot—to try to get her to understand my particular situation. Each time, I plead for her to begin increasing my erythropoietin dose at the top of the downward trend of my hemoglobin. I have 11 years of lab reports in a spreadsheet and can empirically demonstrate that once my hemoglobin goes under 11.5 g/dL it’s not going back up on its own. “But you’re still within the protocol,” is her pat response each and every time. So we do this dance and eventually she agrees to diverge from the CMS protocol and increase my erythropoietin dose (usually from around 10,000iu to 22,000iu).
We have to do this dance each and every time because she’s a specialist and she sees only the pinhole, not the panorama. She refuses to associate my breathing difficulties with my anemia, for example. Her pinhole training teaches that breathing problems in ESRD patients means fluid buildup around the lungs or heart problems; nothing to do with anemia. My Chinese medicine practitioner, on the other hand, ignores any pinhole when necessary in order to take in the panorama. He’s abundantly and deeply aware of the connection between the kidneys and the lungs (and the small intestines, for that matter). More importantly, he’s always considering whole systems and unintended consequences. As a result, he’s rarely playing whack-a-mole with any given collection of symptoms.
Hence my realization—less than two years into this disease—that while western medicine and dialysis keeps me alive, Chinese medicine (and some other radical alternative therapies) keep me well.
Western medicine is absolutely fantastic in a crisis. If I get hit by a bus, take me to the closest trauma center and let them work their wonders. But once the crisis is over, western medicine has little to no clue and collectively so much ego, hubris, and pinhole-thinking that it’s dangerous. We’d be better off without medical specialists in the West. Or at least far fewer of them; fewer pinholes and more panoramas.
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