I am now listed for a double lung transplant at the Mayo Clinic in Jacksonville,Florida. I met a wonderful doctor there who took on my case when most would not.He is the one who finally diagnosed the Shwachman- Diamond Syndrome. He is also the only lung transplant pulmonologist to ever transpalnt another patient with Shwachman-Diamond Syndrome that we are aware of.
The transplant evaluation process was an eye opener.I was finally breaking free of the denial that I had rooted deep inside me. When we were leaving the neighborhood tears welled up in my eyes. I wasn't going to Florida for a great Disney Vacation. I was going there to save my life.After the few tears were quietly shed, I accepted my fate and put it in the hands of God and the people I trusted in Florida.
I knew that I was sick.I had spent a portion of almost every month of that year in the hospital and was having trouble completing even the simple task of taking a shower or brushing my hair. Just taking a shower required a nap afterwards.
When the doctor explained the results of the tests, it all hit home for me. They told me,without a double lung transplant, I will die. Not in 10 years not even in 5 but I have maybe 2 years left on the ones I have now. If I should get a serious pneumonia, I could end up on a ventilator and never come off again. I am just 25 years old. I am not ready to die.I will fight to the bitter end if I have too. I am ready for that challenge.
I have goals. I want to leave my house again without oxygen.I want people to see my face, not my oxygen tubing wrapped around it. I want to run for the first time in my life. I want to wake up each morning and not cough and choke. I want to go one day that I don't cough so hard I throw up. I want to go back to school and become a Physician's Assistant and treat young people with chronic illnesses and show them the empathy that I wish the doctors I had as a child showed me. I want to go swimming. I want to yell as a rollar coaster comes screaming down a steap hill.
I want to take a breath and not have to think about it . . .
What I need is help to do win this fight. We need donations. My husband and I must relocate to Florida and the costs are stagering.
We have a fund set up through the "National Transplant Assistant Fund" that helps patients who are awaiting organs create an account that has a 501 (c) (3) status. This allows companies, comunity members, friends, church members, and family members to make tax deductible donations.
