mkew,
Are you being unreasonable? I guess every patient has to ask themselves that when they choose a doctor or hospital especially for a surgery that is an elective procedure. While all the testing is there to ensure that you are healthy enough to donate, it is also an opportunity for you to interview the hospital and see how will they respond if there is a complication. I don't think it is unreasonable for a surgeon to take 15 minutes out of their busy day to pick up the phone and introduce him or herself. I had a transplant coordinator who also coordinated in a similar fashion. It seemed like it was her mission to answer my questions by having me ask her, she asked the doctor and then got back to me. Then I had to say, no that wasn't what I asked and the routine repeated. Have you been assigned an independent living donor advocate? This is someone who is supposed to advocate for the donor independent of the team and it is not the transplant nurse coordinator. You may want to find out who your independent advocate is and contact them. This is from the OPTN website (
http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf)
Independent Donor Advocates.
Reserved.
The living kidney donor recovery hospital must provide an independent donor advocate
(IDA) who is not involved with the potential recipient evaluation and is independent of the
decision to transplant the potential recipient. 12-9
December 13, 2012
12.4.1 The IDA must assist the potential living kidney donor with the evaluation
process and focus on their needs and questions. The IDA must be
knowledgeable about risks and benefits associated with all phases of the
donation process. IDA responsibilities include, but are not limited to the
following:
• Promote the best interests of the potential living donor
• Advocate for the rights of the potential donor
• Assist the potential donor in obtaining and understanding information
regarding the:
i. Consent process;
ii. Evaluation process;
iii. Surgical procedure;
iv. Medical and psychosocial risks;
v. Benefit and need for follow-up.
Just make sure before you embark on this journey that you feel comfortable with your team and trust them. It doesn't mean everything will be perfect but you will know if it feels right.
What ever happened with the hematuria? Did you get a satisfactory explanation as to why this has been present in all your samples.
Also you mentioned that you were traveling for the surgery. Have you looked into the possibility of you donating at a center near you and having your recipient travel if they are well enough? My recipient traveled to a hospital in my home town, went home three weeks later and was referred to a nephrologist at home. It worked well for us. Insurance/MC paid for the surgeries with no glitches.
Good luck with your plans and hope everything works out for the best.
Sherri