Hello, thanks for stopping by, I first just want to warn you that I have never blogged before so I can’t promise anything spectacular. The decision to start a blog has come from several things. First, I have been told by many to write a book but I doubt anyone would want to read it but a handful and they already know the story. I am nothing special, I just have gone through something that some people think is extraordinary because it is rare in the grand population but in the population of people with cystic fibrosis it really isn’t. Second, I think I need to find a better outlet for myself. Facebook sucks because I don’t want those people to know how I really feel. They don’t get me anyway which is why I need an outlet in the first place. So I guess, lets begin shall we?
First, the name. I came up with this name, Athanasia, many years ago in high school. I was writing a story about a fairy princess and needed a name for her. I knew I wanted it to beautiful and have a special meaning. I started going through the dictionary and found the word. It meant immortality. That is a perfect name for a fairy and I used it. Over the many years since, I have used it for myself, not because I think I am immortal or anything. Far from it actually. But because I like the idea of part of me being immortal and unstoppable. I also never felt like my name fit me very much either. For some reason I have never really been given a nickname either in my life. At best, people just shortened my name. This is the name I would have chosen for myself if it worked that way.
Second, my story. I was diagnosed with cystic fibrosis when I was 2 1/2 years old. (CF is a recessive genetic disease that basically makes the body produce excess, thicker mucus in various areas in the body. The two most affected areas are the respiratory and digestive systems.) At the time, my parents were told I would be lucky to make it to 10. But I made it to 24 with an associates degree, working at Disney World, a trip to Australia and New Zealand as a student ambassador and various other things I probably never should have been able to do.
My first semester in college, I got mono which basically kicked my ass in every way possible. Every symptom you have ever heard of for mono, I had it. It took the doctors a week and a half of extensive tests to figure out what it was. My lung function had dropped from around 50% to 35% after that and stayed there for a while. The docs recommended that I get evaluated for a transplant so my family and I carefully thought about a transplant center to go to. Our choices at the time were Cleveland, Chicago, and Pittsburgh. Cleveland was a baby in the land of lung transplants so we outlawed that one. Chicago and Pittsburgh had equal things going for them as far as distance and experience. The difference was when it came to cf lung transplants. While Chicago had performed slightly more overall transplants, Pittsburgh had a much higher percentage of their total lung transplants being done on cf patients. This was a big deal because cf effects other parts of the body like the digestive system as well so having experience with that was important. My family went there about 6 months later and I was evaluated. I was doing much better at the time but they listed me anyway because at the time, transplants lists were based on time spent on the list still. Years went by and I was re-evaluated to keep track of my progress and most of that time I was actually at the top of the list but was too healthy to risk it. I was deemed ‘frozen’ or ‘inactive’ meaning I held my spot at the top but was never looked at when lungs became available because I did not need them at the time but if things were to change, I would become active again and be the next one in line. After a couple of years, the system changed to a scale-based list in which several aspects of your health was evaluated and you were given a number on a scale and listed by your number. Your number looked at how much you needed it and how well your body would most likely respond (as in are you too sick to get it at the time) and as you were re-evaluated, you moved up or down accordingly.
after 5 years on the list, my health declined a lot. In April 2007, my lung collapsed and I spent a month in the hospital with a chest tube to heal it. I ended up going home on oxygen after this trip. It was my first time on oxygen at home. I spent that summer doing minimal things with my family because I didn’t have the energy to do much. Eating was too hard for me to do. On Sept 18th of that year, I started hemorrhaging in my lungs and I felt like I was drowning. I went to the hospital where they found out my CO2 level was over 140 (it should be less than 40) and they tried to flush out my system with bi-pap machines but I honestly felt like I was being suffocated with oxygen. My only option was to go on the ventilator. I vaguely remember things about that but they medicated me so that I was paralyzed from the neck down to make sure I didn’t rip out the tube. I could look around and blink and I remember how hard that was trying to communicate that way. My family started asking yes or no questions that I could blink once for yes and twice for no. That helped a lot.
The next day I was life-flighted to Pittsburgh and I remember being so uncomfortable on the board during the flight and hearing the nurse and the pilot talking but I couldn’t get their attention. I fell asleep and that is the last thing I remember til 4 days later. What had happened during that time was I had slipped into a coma during the flight. ( I am not sure if it was drug induced or if I slipped into it as a result of all of my organs beginning to shut down.) Upon arrival to the hospital, the docs determined I was too sick to do anything and when my family arrived several hours later (they drove) they were told I would need to have some antibiotics to try and get rid of my pneumonia before they could think about transplant. Sometime that early morning, Monday the 24th, they got a call from the docs saying lungs had come in and they were going to transplant me.
I remember waking up on Thursday with a vent in. I had a weird dream in which I was in the hospital talking without the vent in. As it turned out it was not a dream but I had actually woke up on Wednesday (even Tuesday I guess) and they went through the whole ‘you had your transplant, how does it feel?’ conversation with me which I did not believe and responded with trying to rip my gown off to see my new lungs. I was pretty doped up on meds though. On Wednesday they had taken out the vent but that evening they had to put it back in because I had too much fluid on my lungs. I remember everyday since.
There is more to this story which I will share in another post. This one seems very long already.
