It's been a few weeks since we heard news concerning my transplant and since then, I've been trying to wrap my brain around it all. The hospital decided that I was too high risk for the transplant and denied me. Part of living with a chronic and/or terminal illness is that you are bound to get bad news from the doctors. But you never get used to it and each time you get bad news, you have to go through the healing and coping process all over again.
At this point, I'm still unsure of how to feel about not getting the transplant. Part of me is relieved that I don't have to make that decision. I'm glad I won't be spending a minimum of three years across the country away from my family and friends. I'm glad that I won't get another scar or have to learn a whole new medicine regimen.
But then there is a part of me that is mad. I'm mad that this is one more decision I can't make for myself. One more thing I don't have control over. I'm scared because this means once I start to get sick again, there is very little that can be done to get me better again.
All my life I heard “someday you'll get a transplant,” and I, without realizing it, put the transplant on a pedestal. Something to look forward to. Something that would fix all of this. I know now that it's not a quick fix all and that there are still complications that would come from the surgery. But there was still always that little bit of hope that accompanied the idea of a transplant.
But now that hope is gone... and I just don't know what to do or how to feel. I'm in limbo.
For a year and a half to about two years, my family and I have been in limbo. Moving from one center to another, waiting to see what test results said, waiting to hear if the doctors and hospitals would take me on. We never really got concrete answers and have put our lives on hold all because of this.
And now it's over and I'm not sure what to do. I'm relieved it's over—but I'm also scared because now that we have a “no” answer, I have to learn how to deal and cope with getting an answer I'm not 100% pleased with (although to be fair, I wouldn’t have been 100% pleased with the yes answer either because of what that entails.)
It's hard to express your feelings when you're feeling them all at once and aren't sure which one to focus on. I haven't really talked about my feelings on this matter to many people because quite honestly, I'm not sure how I feel about it to begin with. It's amazing how one thing can evoke the whole spectrum of emotions at the same time, from relieved to being terrified.
I want to say thank you to all the people who have kept in touch with me during all of this and been there for me. Your support and love as always, means so much to me.
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