I just wanted to post an update about whats been going on ever since my 'dry run' adventure. I have been seeing a social worker, who I am very close with every week since I've been back. It's definitely helped me with all the anxiety that I have about what happened and about everything that's going to happen. Having my CF friends helps a lot to! As I've mentioned before I have became pretty good friends with my friend mikalya, who got her transplant on March 18th. And I'm happy to report that she is currently at HOME, recovering from her life saving double lung transplant. Being able to follow/talk to her since she got her transplant has been really nice for me and has put my mind at ease with some things I had been stressing out about. Please continue to pray for her though! On april 5th, I was put in the hospital because I had gotten CF sick and needed a little pick me up. So I was in the hospital for 9 days and then got released to finish my antibiotics at home. And today I came off of IVs!!! Yayayayayay!!!!! When I was admitted my pfts were down to 20% and my weight was at 102 pounds. Today I am 107 pounds and my pfts were 26%!!!!!! My pfts haven't been that good since September!! I got some bad news today though to. Every year there's a big CF forum that is for CFers and CF families doctors and whoever else is involved in the CF world. It's a big event that updates everyone on all the progress that has been made. Well I was planning on going but I got a call today saying that I can't go because I grow one of my stands of pseudomonas is resistant to all forms of antibiotics And since CF patients are contagious to each other, I'm not allowed to go. I was really upset when I got the call from my doctor. For now, I am doing pretty good and I hope that it continues to stay this way.
Me IV free!!!!! :)
Which one do you prefer?
Register here: http://www.organdonor.gov/becomingdonor/stateregistries.html
Prayers and good thoughts are always welcome and appreciated <3
- Amanda :)