Today I am 8 months post-transplant. I am doing well with a few minor setbacks. I take a lot of medicine on a daily basis and need to start exercising to work out my lungs. I currently have a gym membership but hardly have but the time to go. I still struggle everyday with the idea of what I went through, it's hard to imagine and it's hard to believe. But I keep trying every day, but what do they say, the struggle is real.
Dec 27, 2016
On November 13,2016 at 7:15 roughly in the morning my phone rang and at that hour who wants to answer the phone ? It was Sunday and I was trying to sleep in a little as I had been feeling rough. So i did not answer the call. Next I knew I heard my husbands phone ring and he didn't answer, at that point I knew it was for me and I needed to get up. Next i knew, my phone was ringing again. Y^es. this this time I answered it. The nurse coordinator did her spew telling me there was a pair of lungs and that I was second in line for them but they do not think the first canidate will be able to get them. At this point she told me to head to the hospital and get prepped in case. So, I woke up my husband and dad and said it was time to go, that I could be getting new lungs. After 45 minutes we were headed to the hospital. I didn't know how to feel or what to think, I was numb. Half way there I got a phone call from the nurse asking how long it was going to take that they were ready for me. And yet i was still numb. We were only 10 minutes away, and they wanted me to skip registering and come straight to the floor for the operation room. At this point I wish some feelings would have came to me but I guess the reality of the situation was not sinking in. Once we got to the hospital they had several people come talk to me and sign consents and then they were wheeling me down the hall to the operating room. There was little prep time in the room that I remember and then it was off to sleep I went. The next thing I remember is waking up in recovery the next day around 2 and even things are fuzzy. I was ICU for 5 days and allot of med adjusting, testing, doctors, nurses, an allergic reaction and imagining things. Yes, at one point I imagined that my kids were there and were objects around the room. Once I was moved to the step down units, things got better and i could move around and have some freedom from some of the tubing I was connected to. After 4 days, 9 total I was sent home ready to lead a new life that now consists of a strict medicine regimen,allot of sleep and healing, discomfort that is getting better daily, and several restrictions that are slowly going away. At my last doc appointment things were looking good, my PFT's have over doubled from before the transplant to 67% from 29% at my lowest back in October. Breathing is getting easier and I can do more walking, talking and independent activities that I previously needed help with or avoided!
Jul 19, 2016
My mind is just rattled. I just read a heart wrenching blurb from a girl who had cystic fibrosis like me and she made some very valid points in her blurb. I have grown up knowing CF as a killer. I...
Feb 08, 2016
I had my first call today for potential lungs but by the time I was able to head to the hospital they called back and told me one of the lungs were no good and would not work for me. Feeling...
Jan 22, 2016
Yesterday I went to the CF doctor for an ill visit. Just like I suspected my lung function dropped and I lost 2 pounds. My lung function is now 26.6%, so back on i.v. antibiotics for the next two...