As a person living with a chronic illness, I spend a lot of time waiting:
Waiting in the doctor's office
Waiting for prescription refills, test results, or insurance approvals
Waiting for pain to go away
Waiting for promising new medical treatments or research
Waiting for good news . . . or bad
All that waiting is a huge weight on my shoulders. It's a burden I carry with me every day. It's exhausting, and makes me quite anxious.
For about a month or so, I've been waiting for an upcoming visit to the Cleveland Clinic where I will be evaluated for a lung transplant. The organ transplant process is quite complicated, and I am complicated patient with a rare, incurable disease, Scleroderma. Earlier this year, I was turned down as a potential candidate by Loyola University Medical Center after more than a year of being watched by their lung transplant team. I was not accepted by them as a patient due to my various problems related to Scleroderma. I wrote a little bit about my Loyola experience on my archived blog, In Sickness and in Health.
After being declined by Loyola, I took a little break to re-group. Then my pulmonologist at Northwestern sought out other potential transplant centers with mixed results: Duke - no, too risky, University of Pittsburgh - maybe, but problems with my insurance coverage, then the Cleveland Clinic - yes, but . . .
Yes, they will take a look at me, my medical records and my history, and my complications related to Scleroderma. Yes, they will give me a series of medical tests, mostly pulmonary function testing, and I will meet with several members of the transplant team during my two-day visit. Then . . .
The waiting will begin again as we do not expect to have any answers during next week's visit. But we will have questions:
Will I be accepted as a transplant candidate? If so, when would I be listed? If not, what happens next?
The waiting is the hardest part.
Every day you get one more yard.
You take it on faith, you take it to the heart.
The waiting is the hardest part
- Tom Petty