CK,
I agree with you in that I don't think hospitals take people's organs maliciously. But it is not "hospitals", there are human beings, doctors, nurses, social workers etc who are all fallible. I think it must be hard to know how to deal with healthy patients when you see all the sick patients around you and are responsible to heal them. The healthy patients sometimes then are viewed as a "cure" for your patient. Yes, there are two teams who are supposed to represent the recipient and donor separately but essentially they all come together as a team when they discuss each case and work as one. In my case, the nurse coordinator started out by being in contact with both my brother and I together and then out of the blue said ok, from now on I am only your brother's nurse and someone else will be taking care of you. I felt very abandoned. I had been counting on her and I had given her all of my information. She knew all along she was representing my brother, got all my medical information, concluded that I was a possibility and then set up appointments for my lab work and left me. When I met with the nephrologist, I kept asking question after question on my list. I was very hesitant to do this, as I have another brother who I found out is also under the care of a nephrologist, and he said to me out of frustration, "well, you're healthy and your brother is sick". He wasn't my brother's doctor but he is a doctor who is trained to heal sick patients. Here I was a great treatment and he didn't want to let it go. The other issue is that there are no universal standards, no set protocols monitored by anyone. Every transplant center acts as they see fit. Some do certain tests, others don', some offer living donor advocates, some don't. We see it here on the forum, some donors have great treatment, support, follow up with their center and others feel abandoned.
In terms of diaylsis; that's a business too. Ask how many dialysis patients are even aware of living donor transplants? Are they on a waiting list for a transplant? Some nephrologists just don't even inform their patients because they think they aren't capable of managing their medications, don't have a support system etc. Some dialysis centers are owned by nephrologists and are a money maker for them. So unfortunately lots of things in medicine is a business. That's also what drives research and creates new medications and treatments for so many diseases. Double edged sword.
Look at the news recently about physicians who lost their licenses and hospitals in financial ruin because of cardiologists who used stents when not needed. I don't think physicians go into practice deciding "I think I'm going to commit malpractice." But I do think the lines get blurred and some decisions help one person but harm another or an entire process.
And yes, I have saved Medicare lots of money by having them not pay for another patient on dialysis. So as a donor, I should receive at least Medicare benefits to ensure my future health. Not necessarily a monetary payment but I believe donors should not fall through the health care cracks. And in terms of follow up, donors should be offered to be followed up for lifetime. Or if they do contact their center they should not be turned away to their PCP or told they are no longer required to give them care. No one can make someone keep an appointment. But I do not believe as some transplant centers claim, that donors are annoyed and do not want to come in for appointments. They don't have to come in for appointments. They can get their follow up, paid for by the transplant center, the same way they did when the transplant center needed them for the surgery, and have those results forwarded by their PCP to UNOS or OPTN. Physicians do it for recipients.
Ok, my rant is over. Glad that you had a great experience and hope both you and your recipient have many years of good health.
Sherri