Prednisone - how I loathe you ...

I have literally been on prednisone for the past two and a half years AT LEAST now .. CONTINUOUSLY. I honestly don't even feel that it makes much of a difference in the tightness in my chest anymore. I had gotten myself down to 2mg every day, another week and a half and I would have been prednisone free and then BAM - in the ICU, getting solumedrol boluses through my IV. Prednisone makes me insane. I hate the way I feel like I am a completely different person. I don't sleep well, I am always shaking my hands and legs. When I sleep at night I get the WORST night sweats and wake up completely SOAKED through to my sheets. It is so unpleasant. I have been on a million different medications all with different annoying side effects but Prednisone by far is the thing I HATE the most.

Lung Transplant

Well it's been a pretty crazy two weeks. I started feeling sick a few weeks ago but I honestly thought it was just a cough and chest tightness related to my monthly period. A week went by and I started feeling sicker and running fevers. I knew something was wrong, I just felt like something more was going on but couldn't put my finger on it. My doctor had added another oral antibiotic last week but so far it was not helping. Last monday January 17th my dad brought me into the ER. I was running fevers, had a horrendous cough with much thicker, darker mucus than ever before, I was also in tremendous pain and had a humongous headache. After being in the ER for 12 hours, they decided to transfer me to the MICU because I was desaturating and not able to breathe at all. They did blood gas levels and I had so much carbon dioxide in my lungs that my brain kind of shut down and told my lungs to stop cooperating. They put me on a bipap machine, which was enough to lower the amount of CO2 in my blood without them having to intubate me. I am extremely lucky that they did not have to intubate me, but it was extremely scary. For the first time in my life, I literally could not catch my breath. I thought that I wasn't going to make it. My family was by my bedside the entire time and said that I was so out of it that my eyes kept rolling to the back of my head. When I woke up and finally realized where I was and how bad things were I realized how serious things were. Joey and my parents made a wall of pictures of family and friends on my wall to remind me to keep fighting - because for a while, nobody was really sure I was going to pull through.
When I was transferred out of the MICU to a regular floor I was shocked by news that a good friend of mine, Tina Collotta with Cystic Fibrosis had lost her battle that morning. I have not been more upset or devastated in a long time. Tina's death kind of sent a chill through my body. Her and I have been friends online for about 10 years now and we always had very similar situations CF wise. We always seemed to be at the same baseline with out PFT's, always going in the hospital at the same time, I just completely related to her situation. I met her a few years ago. We were both on home IV's, but we decided to grab dinner and it was so much fun. Her and I both had the same goofy, laid back personality. I still can't believe she's gone. The most upsetting part of this whole thing is that she was taken way too fast. She literally just got actively listed for a double lung transplant this past week, she has a beautiful little girl who is going to miss out on having an amazing mother like Tina in her life.
My doctor and social worker talked to me this week and think that its time that I start looking into transplant. My PFTs are technically not low enough to get actively listed right now, but they are very close. The fact that I have been in an ICU twice in the past 6 months and almost got intubated is also a reason they want to be proactive. I am scared and at the same time extremely excited for this new journey. I know that there are risks and things can go wrong, but I am so sick of living my life in and out of the hospital. For the past two years everyone has seen my health decline. It seems like I am on IV meds every 2-3 months and in between those times I usually only feel good for 2-3 weeks at best. It's not fair. If there is a pair of lungs out there for me, that can give me a second chance at life, I want it. I am ready for the life style changes that transplant requires.