So, at the beginning of the week I said if I could just get through this week I would feel a lot better and I was so right.. I am ecstatic that I am on the transplant list. I'm not gonna lie, for the longest time I did not want to be on the transplant list. Dalton and I would talk about it often and it would usually end up in a bickering match. I wasn't ready and he was. I could not make up my mind whether I even wanted to go through with it. I wasn't scared of the surgery, not at all. I wasn't scared of being on the vent after surgery, I wasn't afraid of ECMO if it came to that, I was simply afraid of rejection.
When a patient gets new lungs (or any organ for that matter), there is a possible chance that rejection of the new organ can occur. Your body recognizes that the organ shouldn't be there and basically attacks it. Unfortunately, lungs are probably the most difficult to transplant. My fear of rejection was so intense that I had an internal fight with myself everyday. I basically kept my fear hidden because no one wants anyone to know their deepest fear.
I can honestly say I am not afraid of anything else.. I am not afraid of dying, in fact, I have prepared myself to die. When you are in this kind of situation, it is best to prepare to die. You have to make sure you have all of your important paperwork; a will, power of attorney, financial power of attorney, etc. I'm 23 I shouldn't even know what a power of attorney is, but I do. If I was to go into coma right now, there is a binder that Dalton or my parents could go to and find every piece of information that they need. From what to do from a health standpoint, to what company my house payment needs to go to. It's all there.
Another reason that I was putting this transplant off for as long as possible was because of the new drug combination that Vertex Pharmaceuticals is coming out with, possibly within the next year. How would you feel if you had fought a disease all of your life, spent a lot of time in the hospital, had multiple surgeries, fought for every breath and all of a sudden a pill could fix your problems? This pill is supposed to treat the underlying defects where all of the problems start and it is showing good results. I have been sticking it out, waiting for as long as possible to hopefully get my chance with this drug but my time is closing in on me and I don't think it is possible to wait that long anymore.
On Wednesday at our clinic appointment, with a PFT of 17% on 4 liters of oxygen and still feeling very short of breath I relayed my concerns of rejection with Dr. Pilewski. Although I had told him this concern before (so he already knew what was coming) he listened and cared. He never tried to pressure me. I told him I still wasn't ready and that I was still scared of rejection. This is really something you have to figure out on your own. No one can make this decision for you. You have to want it for yourself and be totally committed to taking on the responsibility of a whole new life. After clinic on Wednesday I was admitted into the hospital.
I have been doing a lot of thinking and reflecting on the past few months, especially on Wednesday night. I am seeing my old friends have the time of their lives. I have lost so many friends due to my Cystic Fibrosis, I hardly have any left. I don't have any close friends except Dalton and well, he is stuck with me! There is nobody I feel like I can just text to be texting. Where did everyone in my life go? Why do I feel so abandoned? I am not healthy enough to go out to bars in the smoke, I can't go dancing and wheel an oxygen tank around, I get so tired so easily and walk so slow because it literally takes everything out of me to walk. I guess they are afraid I will hold them back. But, at least now I know who really is a true friend and who isn't. No matter how much I try to still be friends, nobody really tries with me. I am tired of living this way.. I am wasting days, months, of my precious life. This should be the prime time of my life to be doing what I want to do and it's not. I'm mostly homebound, something had to change.
With my mom sitting right next to me in the hospital, Dr. Pilewski came in and I said, "I'm ready, I want to be listed." He asked what had changed my mind overnight. Well, I will tell you what.. I am so sick that the new drug isn't probably going to help me much to matter at all, I could still be on oxygen even with the drug and I could still stay sick. I could possibly need a transplant in the near future anyway.
Sitting in my house waiting to die or a pill is not being proactive.. I have a life to live and I am beyond ready to start living! I have so many things I want to do after transplant and I can't wait another second!! I am ready to have my second chance at life.
-Katie
Katie, you don't know me personally but I have been following your blog since almost the very beginning. I can't even remember exactly how I found it, but I was so moved by your story that I just couldn't help myself. I felt like you were my little sister. I just wanted to know more. I wanted to know how you were, as a person, not just your disease. I wanted to follow your story because from the first post I read, I felt like I already knew you. Then, one day on Facebook, I find out you are related to a girl I went to college with (Beth Donovan). At LWC, I was her RA and her nickname was Spit. She was one of my fav people I had on my hall that year. I was actually kind of ecstatic to find out there was only 1 degree of separation between us. I swear, I am not a crazy stalker. I just feel drawn to you and your story. I have never commented or posted before for fear of sounding crazy. But this post made me want to reach out. No, I don't know you so therefore you cannot call me a "friend," but I would LOVE to get to know you. I am a text-a-holic and awake more than I am asleep, so if there is anytime you want someone to text just because, I would be honored if you started a conversation with me. I won't post my cell number here for all the world to see, but feel free to email me at laura (dot) pollard614 (at) gmail (dot) com and I will send me number from there. I look forward to the opportunity to get to know you better!
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