Hi, new potential donor here. I'm wondering if I'm being unreasonably impatient, or if my expectations on communication are too high, so I'd like to get some feedback on your experience with how long the whole process took from first reaching out to the transplant center to the date of the surgery. Here's what's going on with me so far...
Just before Christmas 2018 I completed the online donor questionnaire. When I submitted it, I got an automatic response saying someone would contact me within 10 days. I waited several weeks, then I started calling. I can't remember how many times I called and how many messages I left. I finally asked to escalate, and that's the day someone finally called me, my donor advocate. We scheduled the date to come in for testing - March 7, 2019. She also said I would need to make sure all of my routine cancer screenings were up-to-date, so I scheduled my mammogram and pap smear. Luckily the colonoscopy was done a few years ago
Everyone was wonderful on March 7 - friendly, patient, informative. All of the test results were available within about a week, so I expected someone would call to discuss the results and next steps. Nope. I waited a few weeks and then started calling and leaving messages every day. Finally I got a return call - they hadn't been able to access my medical records to get my colonoscopy and mammogram results, and I needed to do one more test, a 24 hour urine test, which they would order to be sent to my home, and that I should expect it to arrive within 5 days. Hmm, would they ever have told me they were having trouble accessing my medical records if I hadn't reached out? So 5 days pass, no test arrives, so I call and go through the routine of leaving daily messages again. It turns out the order never went through, so the test was ordered again. Hooray, the test finally arrives a few days later. On April 11 I got notification that the results were released to the doctor. When I hadn't heard anything yet on April 16, I called again, then I found that I could send messages through the hospital's online portal, so I did that. Maybe that's the magic trick. I got a response the same day, saying they now have everything they need from me, and they will be in touch. Hmm, how long should I wait this time to hear back from someone? I realize it has only been 4 months, but it feels like a lifetime of waiting. Is this typically how it works? Does it normally take months before you even start talking about scheduling? Does the donor typically have to continuously reach out to the transplant center to make sure things are moving forward? Am I just being unreasonable?? (I wouldn't be surprised if I am!!
) Thanks!