Dear Roxlyn, I have emailed you over the last five to seven years. You inspired me by your swimming, fitness, attitude, activism, educational work and more. With your inspiration I was able to keep a good attitude as my lung function diminished. By Aug. '08 I was on O2 24/7 and my consumption increased rapidly. By Nov. '08 I was rediagnosed with IPF and my CT scan was all white. In April '09 I got pneumonia and was hospitalized for 11 days. I was very close to death for 3 days. When I got out they reduced my antibiotics and prednisone.
Mike, your post about your marathon talked about COP [BOOP](organizing pneumonia). I printed out the paragraph and took it with me to the pulmonologist. So we went to 40mg prednisone and just barely saved my life again. Thanks Mike.
The pulmonologist asked if I like to gamble on a transplant interview. We had heard on local public radio that the University of Arizona Medical Center had just performed their 100th double lung transplant on a 64 yr old in Jan 09. I was on 12 l/m when I got the interview in Sept 09, screened in Oct., Listed In Nov 09 (now 15 l/m) bed ridden, transplanted Mar 25, 2010. At tha end I was 20 l/m. I could take one step (to/from chair or wheelchair and 5 min sat recovery).Three conentrators, two canula.
I do not use O2 anymore. After 2 false runs to the hospital in an ambulance (unsuitable degraded donor lungs), my third call got great lungs. I just have to control the CMV virus from the transplant and valley fever I caught myself.
I am the 107th double lung xplant at UMC. They are past 115 now. Great survival rate. Roxlyn, Some people think they are too old but some 65 and above are listed. Anyone in UNOS /OPTN region 5 may call UMC and ask for the transplant coordinator.
I don't know what O2 flow rates you guys need. We have a support group that meets weekly with both pre- and post xplant people. There is a scientific ranking, plus size and blood type to get called for xplant. At four l/m at rest you need to look into the process pronto.
UMC has housing to rent or suggest here in Tucson. But some people have been air-evac'd.
Love you both for what you've done,
Oro Valley, AZ
You might say the above letternot only made my day, but has permanently raised my spirits - it is so wonderful to hear if you have helped someone
For some weekend reading: