More blood work today. I actually hadn’t been to the lab or doctor in three weeks! It was nice to have a break. My normal schedule is blood work and an Aranesp shot every two weeks. (Aranesp is the drug that increases red blood cell production.) But last week I was supposed to be in Hawaii. Of course that didn’t happen (thanks, pandemic!), and it didn’t even occur to me to call and see about coming in early.
But somewhere along the way the rest of my schedule got messed up too, as I wasn’t scheduled back again for another three weeks after today. But the nurse got all the appointments rescheduled back to their every-two-weeks routine because the whole point is to keep me at a minimal hemoglobin level, and skipping weeks isn’t going to achieve that goal. They want me hovering around 10 (or even higher if possible, but I’ve never been over 10 since all this started).
Today my hemoglobin was 9.4. The pharmacist upped my Aranesp again. My initial dose was 45 mg, then it was increased to 50 mg; today I got 75 mg. (Hmmm… when does the blood clot risk start?? I’ll have to ask the hematologist that.) I am scheduled to see Dr. T (the new-to-me hematologist) on May 15th. I asked if they were doing in-person visits or remote visits, and the nurse said it was actually my choice. I normally wouldn’t mind just doing a phone visit, but since I haven’t yet met the man, I opted to see him in person. I have questions—one being, “Hey guy, remember when you said you were going to get back to me regarding other providers I could see if for some reason I can’t be seen in PA? I’m still waiting for that info.” It was a month ago tomorrow that he was last in contact with me. Eye roll.
A few weeks ago, I had to go to urgent care due to a suspected sinus infection. I have to remember to tell other providers about the kidney disease as it directs what types of treatment, antibiotics, or other medications they can prescribe for me. It’s still newish enough for me that it doesn’t just pop out of my mouth. She looked it up and said I could take azithromycin or doxycycline safely with kidney disease BUT I can’t take doxycycline with the high dose of iron that I take. Who knew? Certainly not me. I made a mental note to put this information in my phone in the event I need it in the future. I hate to whine (okay, no I don’t) but it’s hard to remember all this stuff—I mean even just to remember to TELL them this stuff.
I still haven’t heard from the doctor’s office in Pittsburgh. I am going to email the case manager today just to keep on her radar. I know everything is just crazy right now with every medical facility, and I’m sure they’re up against it as well. I don’t want to run the risk of being a pest and being permanently put on the back burner, but I don’t want to be forgotten about either. They are my Obi Wan Kenobi (i.e., my last hope, for you non-“Star Wars” people). I just want to jump in the car and GET there. I’m certainly not critical but for sure, the sooner I can get treated the better.
Hemoglobin: 9.4
Low, Low, Low 