Sunday, June 20, 2010

An Intro to Me

I created this blog for me. As a sort of therapy I guess. Anyone can read it, but I write to have a form of something that outlives me. Pictures and words can make you immortal. Maybe that's why a lot of people with CF write. Everywhere we go and everything we do reminds us of how little time we are supposed to have on this earth. Our thoughts can represent us far after we're gone when written.
For people who don't know me, My name is Kayla. I am twenty-three years old and have Cystic Fibrosis, a genetic lung disease. I was diagnosed at three months old when I stopped breathing. I graduated high school in 2005 and started college the following fall. My major was animal management. I had no idea what I would do with an animal management degree, I just knew that working with animals and getting paid for it would be the best job ever. I moved into the dorms in august, and by October I was hospitalized due to respiratory complications. I was diagnosed with a black mold in my lungs that no one could pronounce. I was put on prednisone and was in and out of the hospital as my lungs frankly decided to shit the bed. In December of 05, I was admitted to the local children's hospital to try to resolve this mold. I was put on an iv of Amphotericyn aka Ampho-the-terrible. This drug had to be administered for at least a month and was too harsh on the body for me to administer myself like I had with Ceftaz, and Tobi before. So there I stayed for over a month, including christmas and new years. Specialists would come from other hospitals, ask me questions, prod and poke me and the infectious disease team was never far behind. One doctor told me once, " We've seen this type of mold only in one other patient so far. There's very little in the medical books. Unfortunately the other patient didn't make it." Wow thanks for your uplifting words! After a few more weeks of prednisone, the mold had been squashed. By that time, the damage had been done. My lungs were messed up irreversibly, and I was feeling the repercussions. My doctor recommended sending my info to a hospital in Boston who did lung transplants, a last ditch effort for CF. I was delusionally optomistic. I never thought that within a year and a half I'd be placed on the lung transplant waiting list.
In May of 2007, I began testing for my transplant. The first visit was earlier in March. I thought I was pretty brave going in and that my positivity would not/ could not be rattled. Boy, was I wrong. Everything was thrown out on the table at once in a no nonsense, cut your bullshit way. I know that's the way it has to be when talking about giving someone a pair of lungs when people die everyday waiting for their new ones. I don't really know what I expected, maybe some sugarcoating things, snacks? What I was soon to find out is that sugarcoating does not exist in the world of transplant, and it shouldn't. I learned that day that I could die from transplant, I could also live, and I was trading one disease for another. But what I had to wait to learn was that I am not a statistic, I have so much to live for, and that the disease I'd be trading CF for was absolutely 100% worth it. While waiting to find this out, my world at that time had been shattered. I left the hospital that day never wanting to come back. I was sure I didn't want a transplant and would cry everyday just out of fear I guess. I was beginning to be consumed by this fear, when I was able to get in touch with a guy who also had CF who frequented the same hospital. He was older and listed already for a transplant. He was a bit sicker than I was and traveled to Cleveland to be double listed. I never met him in person, but I feel like I'd known him forever. Never had I ever would have guessed that another person could instill such hope and faith in me. We talked via messages on myspace and emails. He was called for his transplant in May that year and I watched his progress through his caringbridge website and myspace. He was an amazing person and I aspired to be like him and show just as much courage and hope when it was my turn.
I was listed in July of 07. The waiting began. While waiting, I saw Mike achieve so many things he had been held back from. I went back to school in September. I commuted to and from school three days a week struggled walking across campus. I was supposed to wear oxygen, but the positives of being able to breathe hadn't yet outweighed the negative of being seen as anymore different than I already was. During Christmas break, I received a false alarm call from the hospital. I was babysitting my niece when I got a call saying to go to the hospital, that they had lungs for me. My best friend followed my mom and I up there. I think we were there for about three to four hours when I was wheeled into the OR. I was laying there and the surgeon came over to me and said, "not today Kayla." I didn't know what he meant at first, but he proceeded to explain that the lungs had an infection in them. To be honest, I was relieved. I still had time and this call made it seem more real. In January, I made my name inactive on the transplant list for a week to go to Las Vegas. My friend lived out there for school and had time to spend with us before her classes started up again. My mother was not as excited as I was though. I went to Vegas with my friends and had an amazing time! I don't regret my decision for a minute. On February 2nd, I had my second false alarm. This time I was brought into the OR and sedated. The arterial line had been placed in my neck and after the lungs weren't deemed usable, my surgeon bronched me and cleaned a lot of junk out. I woke up feeling horrible and thinking I had had the transplant. My surgeon stayed with me, holding my hand until I woke up. I had moved out with my best friend right after Christmas, and on February 21st, I was planning on sleeping in. My phone woke me up at 8 am. I almost contemplated not moving and letting it ring. It had fallen under my bed the previous night and I got it and noticed the telling area code. I answered and was told they had lungs for me. I showered and packed and went to my mom's house. We got to the hospital in Boston around 11 am. I was checked in and my vitals were monitored and my port was accessed. Due to a delay from another hospital's transplant team, I wasn't wheeled into the OR until 12:30 am on the 22nd. The surgery lasted 12 hours and I was up in ICU around 10 am. I was off the breathing tube the next day and also walking. Thirteen days later, I was being released home.
Fast forwarding through my recovery, I felt like a brand new person. I was able to do so many things that I never thought I'd be able to do again. I was told though that I wasn't allowed to work with animals anymore and needed to quit my job as a vet tech. In June of 09, I started to feel more tired, short of breath, etc. I had a biopsy and nothing was found. My pulmonary function tests kept sliding. I was treated with a pulse of steroids in case it was rejection. The improvement was slight and unsatisfactory. In September of 09, the doctors told me I had chronic rejection and would need another transplant, and because my rejection surfaced before my two year mark, I was not eligable for retransplant with their program. My choices were to travel to Cleveland or Pittsburgh, or to basically lay down and die. I chose Cleveland because I had heard great things about them and trusted who I heard reviews from. I travelled to Cleveland in November and in January after testing, I was placed on the waiting list. So here I am almost 6 months later, still waiting.