I had dinner a few months back with a fellow bone marrow transplant survivor, and while she said many things during our time together that stuck with me, one of the main ones was about how doctors didn’t know when they did transplants back in my day (1991) and they still don’t really know now how completely and totally a bone marrow transplant changes you, like down to a cellular level. That statement has been rattling around in my head ever since.
I know I’ve mentioned before that when I was in the transplant unit, literally watching a nurse hang the IV bag full of my brother’s bone marrow, I asked the doctor standing there in the doorway to my room how the marrow got from my IV through my veins and into my bones where marrow lives. As we all watched the dark red liquid snake its way through the tubing and into my body, the doctor replied, “We don’t really know…it just…does.”
It stands to reason that if they couldn’t exactly tell me how the basic logistics worked, some of the finer points might also be a bit murky for them as well, but the medical community isn’t well known for owning their ignorance. Bravado inspires confidence, and confidence keeps everyone from freaking out. But listen, I promise I won’t freak out if you tell me you’re not sure but that you’re gonna use some of that schooling to apply deductive reasoning, logic, and rationale to find answers. What will freak me out, however, is if you brush off things I tell you as nonsensical or implausible, placate me, or fail to listen to me altogether.
I remember a time within the last year or two when I was visiting with a doctor and I made a comment attributing an issue I was having to my compromised immune system. The doctor asked what I was talking about, and I referred to the bone marrow transplant I’d had. The doctor smiled and told me that while my immune system was compromised immediately following the transplant, enough time had passed that it wasn’t a factor any longer and by now my immune system had long since returned to normal.
On one hand, it sounded logical, and I almost felt foolish for even mentioning it, but on the other hand, how else do you explain how easily and how often I get sick? I shrugged it off in that particular case and didn’t really think about it again…until this past December when I had a battery of tests run to see why my platelet count had dropped. One of the labs came back with the note “All immunoglobulins appear decreased. Pattern suggestive of hypogammaglobulinemia.” Basically, I have a compromised immune system. Hmm.
I have to remind myself that the reverence placed on doctors must create a lot of pressure for them. All that expectation and trust and hope…ugh. Makes me glad I just deal with construction where the worst thing that can happen is a roof falling in on someone’s head. But in all seriousness…the most important knowledge your physician will ever have about your body comes from YOU. You have the higher education they need to combine with all of the other preparatory learning they did to get in that exam room with you in order to make accurate diagnostic assessments. Any doctor who doesn’t place as much importance on your input in that process as their own doesn’t have any business telling you the time of day.
And now, I’m going to go convalesce and hope this triple threat of sinus infection/upper respiratory infection/lower GI bug dies out any minute now because I’ve about had enough. 🤢😷🤒🤧💩🧬🦠🧪🌡🧫