My last email from the case manager in Pittsburgh was a month ago. I checked in with her via email 10 days ago but no response. I emailed Dr. A and Dr. C earlier this week, asking them the same question: should I be considering a different option? I’ve heard nothing. I know it’s only been four days but in our past correspondence, they’ve replied immediately—even on a Sunday.
I am well-aware the world is in upheaval. I get that there are more urgent and critical needs than mine. But it’s so disappointing. Again. I feel like this whole experience to date has just been a series of let downs. It seems like such a ludicrous idea to have to continually lower my expectations for medical care. Or am I just being unrealistic?
I think maybe I should give them/myself until the end of the month (only days away!) before trying to move in another direction. I don’t know. I know this isn’t personal. It just feels personal.
Some good news: Yesterday I went in for lab work and another EPO shot. I guess that last increase in the dosage made a difference because my hemoglobin was 10.3!! It hasn’t been that high since… I don’t even know when it was that high. My last recorded normal hemoglobin was in 2016 at 12.6, but it wasn’t tested again until April of 2019, when all this began. But with it being 10.3 yesterday, I didn’t have to have the EPO shot. That was good news (and it saved me $111.00 to boot). I go again in two weeks. I doubt the “bump” will last that long but even if I could get on an every-three-week schedule instead of any every-two-week schedule, that would be a big help. Supposedly I’ll have to get these shots the rest of my life. (Are ya kidding me with this?) Luckily I don’t generally dwell on things that are that far in the future.
(Remember that excellent early 90s song “Say Something” by James? Jump in the way-back machine: https://www.youtube.com/watch?v=icehffFWOck )