Cellular Level Change

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. 🤢😷🤒🤧💩🧬🦠🧪🌡🧫

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BYOM / DIY

It’s D-Day! Today is the day I will start Mavyret. I’m supposed to take it with a meal, so in honor of this momentous occasion, I’m heating up a frozen pizza right meow. More on that later.

One of the unusual quirks about the specialist I’ve been going to is that they like to have all of their patients’ medication delivered to their in-house pharmacist to dispense so that they can provide counseling, education, and support. I’m assuming there are insurance companies that don’t have a problem with that, but my insurance company hasn’t played well with others throughout this experience.

They rejected five separate claims for Mavyret before my specialist was finally able to schedule a conference call to discuss the specific details of my medical history that were the impetus for his request that I be covered to take Mavyret instead of Epclusa. When doctors file an appeal after the insurance company rejects a claim, the insurance company hands the appeal over to a board certified MD to review. What that MD reviews is the boilerplate form that everyone fills out. It doesn’t have extra spaces for the requesting physician to write in the fine details that take me from being writing on a page to an actual human being. The system is a mess, y’all.

I digress. Insurance finally approved the medicine, but they weren’t giving in to the specialist’s whims. Oh no. In one last act of defiance, they called me and asked me what address they should use to ship the medication. LOL. Now, if my experiences with the specialist’s staff had been all roses and sugar, I probably would’ve had insurance send it to them. However, I was kind of feeling the whole defiance thing, so I went with it and had them send it to my house. I knew if I called the doctor’s office and said, “Yeah, hi…so I have this medicine here, should I just go ahead and take it?” that I’d get in for an appointment a WHOLE lot faster. Like, within two days. Good stuff.

A month or so back, the nurse had told me I needed a couple of vaccines, and that if I just called them the next time I was coming in for an appointment about 20 minutes ahead, they’d get the shots ready and just hit me on my way in or out, no big. So I called ahead as Hubs and I were on our way, and you’d have thought I had called to arrange for my personal helicopter to land on the roof and drop me off. And my helicopter was Air Force 2. And riding along with me for the day was Trump, live tweeting the whole scene. Like, what??? It’s two vaccine shots, homey, and y’all are the ones that told me to just phone it in 20 min ahead of time NBD. While I waited on hold for the nurse to check with a variety of people about what she should do with this unruly psychopath on the phone demanding vaccines, I joked to Hubs that since we already had to BYOM to the Medication Therapy Appointment, maybe I could just have them leave the syringes on the front desk and administer the shots myself as well and make a whole DIY Day of it.

When I checked in, I did actually offer to DIY my own vaccines, which is when they curtly told me they’d handle it. Lol. Yo, if I suddenly stop posting and you find out I died randomly, have the cops check out the staff at the specialist’s office. And tell them it was probably just like some kind of manslaughter, because I can be a lot to take. Just sayin.