Transplant Beginnings

This was a busy week CF wise for me. As of Thursday I officially had my doctor's send a request on my behalf for a transplant appointment at Stanford. It is such a mix of emotions that I have trouble sifting through my own feelings at times. I keep trying to find blogs or info on the emotional side of listing, but it seems very few people touch on this point or at least in a way that even scratches the surface of the feelings that accompany such a huge life altering decision.


For now, I will say I bounce between so many feelings and often have several opposing feelings all at once.


I am feeling relief because at this point transplant is a security plan in case I suddenly get very sick. I feel relieved knowing that if I am in an emergency situation and quickly need a transplant at least I have the process started.


I also feel terrified in a way that I have never felt before. EVERY aspect of transplant feels scary. The testing, seeing if I am accepted, the surgery, the unknown of transplant life, the statistics of transplant survival. Petrifying.


I feel like a failure! I wasn't able to "beat CF" or "not let CF get in my way" which are common phrases in the CF community that I find damaging to anyone who finds that CF does in fact find its way to be an issue. Isn't that what CF is...a progressive disease that gets more and more in your way as it progresses. I guess slogans like, "I am learning to cope with a quality life that keeps getting diminished by CF" doesn't have the same ring except it is actually much more true to most of our journeys with CF.


I feel so much sadness. You spend your whole life knowing someday you will need to consider transplant, but you never fully prepare for that day to be today. I also feel sad that we are so very close to so many CF advances and yet it will likely be too late for me to benefit from any of them. In moments of extreme worry I worry I will get a transplant, a cure will arrive and then I will die from transplant complications.


I feel so much guilt! I feel guilt that I am putting my family through this process. I feel guilt that my daughter will carry such a heavy burden so very young. I feel guilt for how my post transplant life (mainly germs and if/when complications arrive) will burden my family, but especially Kaylee.


I feel hopeful. I love the idea of breathing well. I love the idea of no more treatments. I LOVE the idea of exercising like a real human rather than a 90 year old. I love the idea of being a person with energy and the ability to be more active in life. I feel hopeful that life on the other side will feel worth it.