Health Care Rigamarole

So, readers of this blog know that I have a rare disease, systemic mastocytosis (SM), and it affects nearly all parts of my body with different levels of severity. As a result, I have a whole bunch of doctors who are managing care for the various portions of my body: primary care, allergist, dermatologist, hematologist, and a disease specialist up in Michigan who takes the holistic view. (In my past hunting to figure out what was wrong with me, I also met multiple times with a cardiologist and rheumatologist.)

In the past 6 months or so, my disease has either progressed enough or flared enough that I’m having frequent GI issues as well. My primary care physician, upon learning all the GI issues I’m dealing with, immediately referred me to a gastroenterologist.

Okay, here starts the most recent health care rigamarole.

Technically I have met with this GI doc once before and I didn’t much like him. He seemed overly confident about his knowledge base, yeah-yeahed when I talked about SM, and assured me that my issues would resolve by increasing my fiber intake. (Not true.) I tried calling a second time and I was told I’d need a colonoscopy for further diagnostic reasons. (Also, not true, and I would suffer tremendously from a SM flare as a result.) I walked away feeling that this particular doctor didn’t fully listen to me and he was falling victim to the Dunning-Kruger effect about my condition (thinking himself an expert while actually having a very limited knowledge base). For this guy to be a good match for me would mean that I would need to continuously feed him information about my disease (over multiple appointments, probably) and hope that he would be open to learning more so he could provide me better care. I would need to invest in him and hope that he would be willing to invest back.

It would be easier for me, frankly, to meet with a GI doc who already has a substantial knowledge base about my disease and how it affects the GI system. Turns out, there is a single such doctor in Saint Louis. As if the stars aligned for this match, this doctor practices ~2 miles from my house AND is in network with my insurance company. I called his office and hoped, hoped, hoped he would take me on as a new patient. I have to jump through a variety of hoops to be accepted and, unfortunately, it does not look likely that he’s going to take me because I already have a relationship with a specialist for SM (my doc in Michigan).

So, I called my doc in Michigan and asked whether they would treat me for my GI issues too. It looks like he will, at least for the SM portion of it, so I played telephone relaying my symptoms. I told a nurse who is telling a doctor who, if she deems it bad enough, elevates it up to the SM specialist to hear. The nurse anticipates that the specialist will want me to set up an appointment.

Again, this doctor is an international expert in my disease. His name is all over the research and experimental drug trials. He is a VERY busy man and is in high demand; to be honest, I’m simply lucky he accepted me as a patient. I have never felt more understood by a doctor than when I met with him; I walked away from our appointment feeling reassured and, frankly, optimistic about my future. So, if he was going to manage my SM GI issues too, I figured that I would take whatever appointment time he could give me virtually and I would make it work on my end. Every doctor is doing virtual visits now, right? Apparently, though, there’s some regulation that says Michigan doctors can only meet virtually with Michigan residents. As a result, if he wants to see me, I need to make the 1000+ mile round-trip from Saint Louis to Ann Arbor. Of course, this trek would be during COVID, when I’m already immunocompromised. And, since we’d most likely be tinkering with various medications, food restrictions, and the like, I’d need to make multiple trips – all subject to his availability and not anywhere on my own timetable.

So, here’s where I’m stuck. I can try to resolve this situation somewhat soon by doing multiple trips to Michigan. (I say somewhat because there’s no telling when the expert would be available.) OR I can try to manage the condition on my own until my already scheduled appointment with him in March where follow-up visits would probably be in the summer and maybe COVID will be more resolved. In both of those options, I get to stay connected with the international expert and research trials. OR I can give him up as my doctor and hope that, as a result, the St. Louis based SM GI doc will take me as a patient. I would lose the holistic perspective of my treatment and would have to hope all my other local doctors can sufficiently manage the rest of my body’s care AND that this guy is actually worth the hype. On the flip side, I will gain tremendously in convenience and possibly get care earlier IF he agrees to take me on as a patient. OR I can try to train up the first GI doc who would be starting from essentially no knowledge about my disease, while simultaneously trying to convince him that a colonoscopy is an unnecessary and risky procedure for me. Ugh. Just thinking through these options makes me exhausted.

Hivemind, what option would you choose?