So some of you may know, I was discharged from UCD on Friday night. All the tests that my CF docs wanted to do had been done, so keeping me in there while waiting for results just adds to the risk of me picking up some extra infection that I really don't need right now.
Before discharge I did a 2nd set of PFTs (pulmonary function tests) to compare to the ones done before my bronch where they dilated open my right airway. Pre bronch my PFTs were 37%, post bronch 41%, which we are going to now consider my baseline. Not a whole lot of improvement, but I'll take whatever I can get!
I talked to both of my CF doctors seperately on discharge day about what their thoughts are and what they think we should do. Basically they both agree we're looking at chronic rejection and they want to first increase the medication I'm currently taking for immunosuppression and see if that stops the progression of rejection. If that does not work, they think I should be sent to Stanford for an evaluation with them to see what they think I should do.
Some of you may or may not know that with chronic rejection, the damage done cannot be reversed, but we can only hope to stop the progression of further damage. I have never been in either acute nor chronic rejection since my transplant, so this is all new water for me. One of my doctors brought in a 10 page article for me to read about chronic rejection and all the available treatments (along with their risks). I began reading it while waiting to be discharged and got about 2 paragraphs down where I read that the "median survival after onset is 3-4 years". I stopped reading at that point and will pick it back up when I don't feel quite so overwhelmed.
Since I've been home I've been having a very hard time breathing and dealing with very sharp pain in my sides. While at the grocery store yesterday with Benito my side pain got so bad it knocked the wind out of me and I couldn't move for a few minutes.
Today I stayed in bed as long as I could, sleeping on and off until 2pm hoping that maybe some extra rest is what I need (I sure dind't get any rest in the hospital!). I need to get a hold of my academic advisor about retaking the class I'm currently in at another time because my instructor of this class is not being very understanding about assignments being turned in a little late. I'm also worried about work. I don't want to quit because I love getting out of the house and getting a paycheck, but I don't know how long I'll be able to keep everything going. I think I'm even beginning to get a little bummed out about everything, which doesn't help anything.
A plus is that I have great support from Benito and my family, so I never feel like I'm dealing with all this on my own. Even Roxy helps by snuggling with me when I don't feel good and Benito is busy at work. :)
So for now I go along with the increased immunosuppressant meds I've been taking and wait to go to clinic on the 26th. In the meantime my CF docs are going to discuss my case with a few other doctors including a kidney transplant doctor about what to do for rejection that isn't too hard on the kidneys. So my next blog may not be until after the appointment on the 26th when I should have more to share.
On a much happier note, my mom's birthday is tomorrow and she's coming here so we can go out and get a pedicure and go out to lunch! :D
Take care everyone! Lots of love and thanks for the prayers :)