Primary Care and Chronic Illness--The Update

Awhile ago, I wrote about the challenges of primary care when you are a patient with multiple (and rare) diseases…Or, as my friend Lyrehca says, when you are “clinically interesting.” I have specialists for several different body systems and they each provide fantastic care, but I don’t want to bother the lung guy with the GI problems, or the rheumatologist with the allergic reaction.

So, I embarked on a quest to find a primary care physician. I wanted my new doctor to be in the same hospital as all my other doctors, and finding a group that still accepted new patients proved daunting. Life, the book, and work got busier, and I let the search slide a bit. Then this summer I came down with mesenteric adenitis and was shuffled between specialists and eventually sent to the hospital. I came home re-committed to finding a primary care doc, someone who could have fielded that problem, and put my name down for an appointment five months down the road.

Well, that initial appointment recently happened, and it feels good to have someone coordinating all the moving parts of my care. My new doctor and I clicked; I felt comfortable talking with him, and I appreciated that he’d already become familiar with my case and had been in touch with my other doctors. Since they all work in the same system, they all have access to my latest test results and notes, and I’ve never had such efficient, streamlined care. The new doctor noticed some unusual lab results no one else had looked at—because they didn’t fall under their realm—and followed up on them. We made some important decisions about diagnostic tests for other problems, and I feel good about moving forward.

It’s been almost 20 years since I’ve had an official primary care doctor, and I told him I was worried about contacting the appropriate person for certain infections. Those of you with more experience negotiating this balance between primary care and specialists, do you have any feedback?

“With all you’ve been through you know your body best. Just trust your instincts,” he said. Sounds like a plan, indeed.

On a less personal level, I’d also like to circle back to the issue of universal health care in Massachusetts. As I mentioned before, part of the primary care shortage and the several months’ wait many patients find when they try to make an appointment is an unintended consequence of providing insurance to more people…and of course people without prior access to health insurance and preventive care are often most in need of primary care physicians. Anyway, according to this recent post on WBUR’s Commonhealth blog, Massachusetts now has the lowest rate of uninsured citizens in the country. This is wonderful news—now, let’s try and make sure each of those citizens can get an appointment!