Friday, August 12, 2011
CF DR update
So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.