Bottom Feeder
I shall remain at (or very near) the bottom of the UW Lung Transplant list for the foreseeable future. As you may recall, my transplant pulmonologist, Dr. Edelman, was appealing to UNOS to grant me an exception that would propel me to the top of this region's waiting list (into the 90th percentile). On June 28, I had my (fifth) right heart catheterization and Dr. Edelman was hoping that the results from that test would provide convincing and irrefutable evidence that I need new lungs. He wrote up the test results and waited to hear from UNOS. After about a week, they said no dice. He wrote up MORE information and after about a week, they again said no dice. Third time's not a charm this story; I still did not get the exception so I'm going to continue my glacial pace of waiting...and waiting...and waiting... (although, UW has really upped their pace of transplants this year: they've done 26 lung transplants as of July 6 which is on pace for their goal of 50 a year. And with about 55 of us on the waiting list, my likelihood of getting lungs, while still slim, has increased -- though remember that people are added to the list all the time and most of them go ahead of me.)
Next steps: I'll have my 3-month follow up appointment and round of tests in mid-September. Maybe something new will show up then (or, if there's a drastic change between now and then, we can always appeal to UNOS with updated information).
I feel fine with this decision. I've shared my apprehension about getting The Call and all that follows so I'm not particularly anxious to get a new set of lungs. As usual, I'm managing with life...I'm not leading any Zumba classes but I'm getting the kids where they need to go, throwing birthday parties and getaways, getting food on the table (thanks, Trader Joe's orange chicken!), finding some me time, and enjoying the summer so far. And after following my friend Katie's ordeal post transplant (she had her one-month lungaversary yesterday!), I'm motivated to push myself a little bit more than I have been and get my body conditioned for that long haul post transplant.
Next steps: I'll have my 3-month follow up appointment and round of tests in mid-September. Maybe something new will show up then (or, if there's a drastic change between now and then, we can always appeal to UNOS with updated information).
I feel fine with this decision. I've shared my apprehension about getting The Call and all that follows so I'm not particularly anxious to get a new set of lungs. As usual, I'm managing with life...I'm not leading any Zumba classes but I'm getting the kids where they need to go, throwing birthday parties and getaways, getting food on the table (thanks, Trader Joe's orange chicken!), finding some me time, and enjoying the summer so far. And after following my friend Katie's ordeal post transplant (she had her one-month lungaversary yesterday!), I'm motivated to push myself a little bit more than I have been and get my body conditioned for that long haul post transplant.
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| The first four weeks of summer... |
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Your friend Shani