May 01 2009

What About Nutrition?

I’ve always found it puzzling that, throughout the course of my diagnosis and treatment for PSC, not one healthcare provider has ever mentioned the potential impact that nutrition can have on the disease. Not a single primary care physician, gastroenterologist, hepatologist, nurse, etc. has even uttered a word about it. On those occasions when I have brought up the topic and raised questions, typically with my hepatologist, he has been quick to dismiss the potential for nutrition to have any meaningful impact on the disease, its progression, my prognosis, or my symptoms. Don’t get me wrong, I’m not operating under the illusion that I can eliminate my PSC by eating better. My eyes are wide open to the fact that I’m stuck with PSC and that a transplant is the only real “treatment” option available, and even that, technically, does not eliminate the disease. However, I’m also aware that everything that I eat during the course of a day has some impact on my liver. It also seems obvious to me that some of the things I eat may have a detrimental effect on my liver, other things may have no effect whatsoever, and some things may actually have a positive effect.

That’s why I have begun making more of a nuisance of myself in pushing for some expert guidance on a nutrition plan tailor-made for my individual circumstances, and until recently my questions have fallen on deaf ears. So if the best clinical expertise that I can access seems underwhelmed by the value of nutrition, shouldn’t I just accept their feedback and move along? My answer to that is a firm “No” because I believe this is a profound blind spot among a large portion of physicians and other clinicians practicing in hospitals and academic medical centers today. To be sure, there are exceptions to this blind spot, so I’m talking about tendencies and trends rather than universal, unanimous truths. I should also acknowledge that I am part of the health care industry, not as a clinician, but working as a VP for strategic planning and communications in a Virginia-based health system. So, having worked in hospitals for the past 20 years, I might have an insight into the inner workings of the industry, but I also have to admit that I’m directing some blame at an industry I’m part of. Fair enough.

Here’s what I’ve seen from the inside. For most physicians, nutrition is a tool they pull from the toolbox for one reason only: obesity. This shouldn’t be a real surprise since obesity has become one of the most serious public health issues of the 21st century. The latest statistics suggest that about one-third of Americans are obese, having a Body Mass Index (BMI) of 30 or higher. Consequently, physicians have grown accustomed to obesity being the most common nutritional issue they face. As a result, nutrition has become synonymous with weight loss and counting calories, and that severely underappreciates its far broader potential.

By the way, according to the Centers for Disease Control, as we become more obese, the risk for the following conditions increases:

  • Coronary heart disease
  • Type 2 diabetes
  • Cancers (endometrial, breast, and colon)
  • Hypertension (high blood pressure)
  • Dyslipidemia (for example, high total cholesterol or high levels of triglycerides)
  • Stroke
  • Liver and Gallbladder disease
  • Sleep apnea and respiratory problems
  • Osteoarthritis (a degeneration of cartilage and its underlying bone within a joint)
  • Gynecological problems (abnormal menses, infertility)

If the risk of “liver and gallbladders diseases” increases with weight gain, it seems reasonable to expect that it’s possible to reduce (but not eliminate) the risk of further damage to our livers by dropping a few pounds — especially anyone whose BMI is in the “obese” range. So, even if obesity were the only health issue we could tackle by focusing on a more rigorous nutrition plan, this would be quite an accomplishment that would take a significant burden off our hearts and improve the odds of a favorable surgical outcome.

But I think we should expect far more from our physicians, and even from our health insurers when it comes to providing advice and guidance around nutrition. I think we should expect a plan that helps us go beyond losing weight, and that broadens our focus on eating healthful foods that strengthen us, foods that don’t overburden our livers, and foods that may even help prolong our lives. I find it ironic and disappointing that my health insurer will gladly cover $600-700/month to pay for my dosage of Ursodiol, which even my hepatologist admits its probably having no impact at all on the course of the disease other than making my lab results look better, but they won’t pay $100-150 for a single visit to a nutritionist who can probably have a meaningful impact on my health (by the way, my health plan will pay for a referral to a nutritionist only for newly diagnosed diabetes patients).

Here’s the last thing I’ve got to say about this. After seven years of visits to a hepatologist, I was recently able to get a referral to a nutritionist. I’m not sure if my hepatologist finally had an epiphany, or if I just wore him down. Either way, my insurer still does not view the visit as “medically necessary” so I’ll be happily paying for the visit out of my own pocket. I am already very disciplined and informed about what I eat, and I don’t need to lose any weight, but I can tell you that I learned quite a lot in my hour-long visit with the nutritionist. I also have a renewed since of control, which can be priceless for those of us with PSC since there’s so little we can do to affect the trajectory of our illness. Nope, I’m not cured. And yes, I still need a transplant. But on the day I receive my new liver, I’ll be as healthy and strong as I possibly can be, and I will have stacked the deck in my favor to have as positive an outcome as possible.

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