I went in this afternoon for my weekly Aranesp injection. No quirks there. That all went smoothly. Then I headed over to the physicians center to see Infectious Diseases. The doctor saw me in the ER a couple weeks ago when I was there getting two units of blood. On my way over, my transplant coordinator called and left a message because I couldn't answer the phone at the time.
I listened to the message while sitting in the room with the ID doctor. My transplants doctor's recommendation is to start me on IV caspofungen for five days to treat the thrush. I gave the phone to the ID doctor and she and my transplant coordinator had a very good conversation about the thrush, other infectious issues, the low grade fevers, and what has been done thus far. They swapped phone numbers so I am comfortable they will keep in touch very well.
I have no veins for a central line (long term IV line) which I really need in order to get this IV drug at home. The ID doc wants to move things along, as do my transplant docs of course before it spreads, so she is working on trying to get it set up for home health care to come out to put in a peripheral line every day for me to get the caspofungen. Otherwise, I may have to go to the infusion room at HMC every day to have it done. She wasn't sure if either was possible to set up, but she's going to try. Life would be so much simpler if I could just get a central line and do it from home by myself like I have in the past, but I'll deal with it however it goes.
The problem is, I am allergic to caspofungen so I have to be pre-medicated with IV benadryl. That throws me for a loop and knocks me out. It didn't used to because I had developed a tolerance to it, but since I am not on it so much anymore, it affects me more again. For that reason, I would not be able to drive myself to and from the med center every day. So, hopefully something will work out for me to be able to do it at home, even if it means getting a new IV every day since I can't keep in a peripheral line at home overnight. She also did a chest x-ray because of the cough and that was fine. She said keep an eye on it to make sure it's not getting worse or changing at all. The GP makes me at risk for aspiration pneumonia which I was already at high risk for because of a swallowing disorder I have. So, since the endo showed so much food retention in my belly accompanied by an unexplained cough, that's a pretty big concern. Hopefully it's just a cold that will pass and won't be aggravated by aspirating.
As far as the delayed emptying in my stomach (aka gastroparesis) that wasn't addressed today and won't be with ID. It's something that will require long-term management and considering treatment options, if possible and necessary. The question is not whether I have delayed emptying or not, the question is what is the cause again at this point. In some ways we hope it is meds that can be adjusted, but even that's not a good option. It would be preferred though.
People have wondered at times why I am so adamant about finding the underlying cause for all of my various issues and this is exactly why. I've always been aware that since the underlying cause has never been found that it could just come back and affect my new organs. I've been told that even if they did find the cause, there's nothing they could do or I'm already being treated as I would be for the potential conditions I have pursued. But I just need to know. If there is anything that CAN be done, why not give it a shot? I am in need of an explanation that ties everything together under one name. I just don't believe that one person can have so many different issues without a common connection.
I thank so many of you who have also been misunderstood and misdiagnosed while suffering from so many seemingly unrelated ailments. You've helped me make sense of so much of what has been going on in my body and brought me closer to some things that I think are pointing me in the right direction. I hope that at some point I too will be able to connect the dots.
I'll keep you posted once I know more. I should receive a call from home health care sometime on Wednesday and see if something can be set up to do that infusion at home.
Love to all,
Carissa
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