The psychosocial and emotional issues surrounding kidney disease and living donation never cease to amaze me. What is even more amazing is the lack of support from and assumptions made by the professionals. Clearly, the protocols related to a living donor and the extra points they are granted on the wait list should have been discussed with you while making the decision to test or not. Your relative obviously did not want to disclose this since he clearly wants a living organ. A living donor advocate should be assigned to you to protect your interests and have your health and concerns foremost. You can ask for the living donor advocate, separate from a coordinator. BTW, where are you being evaluated?
The education out there to potential recipients is that deceased donations are sub par and living donations are much better because they last longer, statistically. This certainly wasn't the case when your uncle donated as his recipient died a few days after the transplant. There are some recipients for whom living donations do not work as intended, bottom line, no guarantees for anyone. When my brother asked me to donate my kidney to him, I asked him if he had been placed on the waiting list and he responded to me that he didn't want a deceased donation, he only wanted a living donation. I felt similar to what you expressed. How can he not even wait to see if he is called so not to risk the life or future health complications of a family member. Like you, I have a spouse (self employed where we get our health insurance), young children etc. The only way I have been able to rationalize it and come to terms with it, is that living donation is so drummed into the recipient's head by the doctors that it becomes a paramount quest... you must find a living donor or else you're doomed. And family members are viewed as the organ supply to fix their patients. His doctor at Mt. Sinai (in NYC) told him to call his family and ask them for a kidney because he was in kidney failure. My brother did not share with anyone that he was being treated by a nephrologist for 2 years prior to his kidney failure. His nephrologist was just as shocked by his acute kidney failure as we were and I think felt the need to fix it fast so advised him to get a donor and fast. I don't know if the hospital your uncle is being treated at is the facility where he donated, but they may feel like they need to encourage him to get a living donor and quickly fix what went wrong. He was a healthy donor who according to them should have been able to live perfectly fine with one kidney. He just donated his "spare".
You have very legitimate concerns for your husband and your family. Given the age of your uncle, the circumstances surrounding his donation, his ability to earn 4 extra points on the wait list and be eligible to receive a deceased organ, are very good reasons to have you and your husband question your decision. Your informed consent may have been lacking. Your husband was under the impression that he was needed to be a living donor because your uncle would have to wait "years" according to you, for a deceased organ, when in fact he may have even been offered a donation but declined.
In addition, you aren't getting good vibes about the care you will be receiving at your uncle's hospital. If your husband was having a non elective surgery and you were not pleased with the care, would you seek another opinion or just go through with it? If there is a setback or complication, can you trust them to take care of you and your family? Clearly, they have no qualms about letting you go home 5 days after the surgery and following up with your own doctor. If a complication arises you will be far away and have to navigate care on your own.
I suggest you seek some help outside the hospital to determine if this is something you and your husband want to continue in. A good social worker or psychologist can help you sort out your feelings and make suggestions on how to deal with the family dynamics, sense of entitlement and expectations. Perhaps you may want to seek a second opinion to see if this is something your husband should go through. At any point during the evaluation you can let the coordinator know that you need more time or decide that this may not be right for you and they can tell the recipient that something came up in the testing to disqualify you. This may make it easier since there is so much family pressure for you to donate.
I am so sorry that you and your family are going through this crisis. Glad to see you found this forum. Keep us posted.