Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Sheri on April 18, 2019, 07:05:57 PM
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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!! ;D) Thanks!
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While it might just be inefficiency or work overload at the hospital, it is also true that some hospitals may deliberately slow things down just to give the potential donor lots of time to think it over or perhaps back out. If there is a delay and the potential donor does NOT make contact to ask about progress that hospital may assume that the person has changed her/his mind and is just quietly backing out. So you do have to be persistant. But it does sounb like this hospital is just poorly organized.
You might like to also post at the FaceBook page of Living Donors On Line, as these days a lot more people check in there rather than here.
best wishes,
Fr. Pat (donor '02)
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Oh my. I know what you mean. It seemed like it took forever. Ours took from January 1st until the surgery scheduled for October 30. We told them in January. They didn't even do the testing until March. Then I was too heavy and had to lose weight. By August, I was within range, so they finished testing. By the end of August we could schedule and we couldn't get in until the end of October.
Same as you, we kept on them and kept in contact. I am sure they weren't just sitting there at the center with nothing to do. We were probably in line with everyone else.
If you don't keep in contact and keep at them, they may figure you have given up. Don't feel guilty or that you are hounding them. At least they know you are serious.
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Hi Sheri!
I think it depends on a ton of different factors, like the size of the hospital and transplant team, the health of the recipient, whether you have a recipient in mind, your health, yada yada... But I don't think you are unreasonable at all for being concerned about the timeline. They should be in touch with you when they say they will. This is a huge decision and you should feel absolutely confident in the staff that will be taking care of you during this time. I'd recommend making a complaint or comment about this so they can change their processes. There are certainly reasons for delays, but you shouldn't be left hanging like that!
I'm donating to a relative at Duke. We got very fortunate. I did the online registration before Christmas 2018. Duke does about 3 transplants a week and has a decent sized staff for kidney transplants - doctors, coordinators, nurses, etc. I submitted my lab kit via LabCorp in February. Went for two-day, in person testing in March. Now my surgery is scheduled for April 29 - one week away.
I wish you the best of luck in your application process <3
-Robyn