I found so much healing and peace when I was writing regularly. My transplant feels like a lifetime ago yet I can still recall so many details. Life goes by so quickly yet memories can continue slow dancing in our heads and it feels like time stands still.
I watched Salt of my Soul... The part when she was diagnosed with b cepacia, I watched as her doctors OVER REACTED and made it feel like it was an early death sentence. I was diagnosed with cepacia in the early 90’s I was around 13 years old. The rumor amongst the CF COMMUNITY was that cepacia would kill a patient in less than 2 years. I felt like the CF world wrote me off. I was uninvited to CF Camp, to clinic, to fundraisers...I felt like a leper, an outcast and I had no control over it. I was young and the new drug Pulmozyme was a very new drug breakthrough. I would be lying if I wasn’t scared... but I would also be lying if I didn’t become determined to prove all the statistics wrong.
I feel like there are bad, good and better doctors/specialist. The best aren’t the ones who know everything... it’s not the ones who are driven by statistics, they are the ones who listen, they listen to new ideas, they listen to the person who knows the disease that is destroying them from the inside out. I was blessed to have the best kind of doctors and when I needed a lung transplant 15 years after getting cepacia I found the most incredibly brilliant doctor who waste best; and I found him in Pittsburgh at UPMC.
My life is still incredibly awesome. Everyday I reflect on all the people who were involved and the team at UPMC.
This year 2022 will be the year I dance into my 15th year with my Donor Angels lungs. Life is tough, scary and most times feels like the overwhelming odds against me is just too much. However everyday is a blessing, everyday is a day we learn, grow, and become stronger. EVERYDAY is a BLESSING.
3 comments:
Good to hear you haven't lost hope. For me transplant and I have CF is nothing I could ever do though. I would find the idea of somebody elses dead body parts inside me disturbing but I accept some can handle it eg you. I just hope your not in to much pain. God bless.
So happy to hear that you are doing well!!! I think about you often and am excited that you are celebrating 15 years! I celebrated 10 this year.
Keep up the good work.
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