I am so sorry to hear of your brother's illness and his and his wife's reaction to your kindness. One of the many lessons I learned during the family donation process (and in particular with siblings) is the raw emotional family baggage that is associated when it comes to transplant. Very often it is not about the kidney. We share (for good and bad) history with our siblings. So i am not sure if this was in character for these family members ,or if there are other issues going on and this is just a continuation of that. Even so, it was very unkind for your family to react that way. And I am glad that the physicians who are responsible to evaluate your health have recommended against donation. You are at increased risk should you lose one of your functioning kidneys. This is a wonderful opportunity for you to take control of your health and manage your blood pressure so you do not become a kidney patient. you can thank your brother
(wink, wink)
.
Had you been an unrelated donor (like Fr. Pat who was kind enough to respond so appropriately) you may have gotten accolades and thank yous just for stepping up to test. An unrelated donor, sometimes referred by the transplant team as altruistic donors, have a "choice" to step forward. For related donors, and siblings in particular, there is an underlying assumption (very often from the transplant team) that a kidney patient with a matched or compatible sibling has a willing and able donor - no questions asked. As a sibling donor, I felt a big obligation, duty, responsibility, guilt and also love to donate. But it was a hard decision. There certainly was a sense of entitlement. You know the joke, be kind to your siblings, you may need them for spare parts!
Another lesson I learned during the process... when people become sick with a serious illness and often a chronic illness they become very inwardly focused. Maybe it is self preservation, fear, desperation and whole list of other emotions. They have a hard time focusing on the other. I know when my brother asked me for a kidney he said "my doctor told me I should ask my siblings to donate a kidney to me cause I am in kidney failure". No prep talk, no I know this is a very difficult decision and if you say no, I completely understand. No chance to volunteer but rather he just asked. on the contrary, he said if I didn't pan out, could my 18 and 19 year old daughters test. I was shocked. And I know his transplant surgeon probably did ask him, do you have any siblings and if so just tell them to come in and test. The surgery is minimally invasive, doesn't cost anything to the donor, they stay in the hospital for a day or two and go back to work two weeks later. people can live with one kidney, no big deal, its a "spare". (and this surgeon probably has two kidneys). So this is down played to the recipient so it is no wonder that your brother and his wife had this reaction. Maybe they heard that donation is no big deal, living donation is better than deceased so you "need" to have a living donor. There is hyper focus on getting a living donor and soon cause otherwise you go on dialysis. no excuse for poor behavior but I think I understand it better now.
As to what to do now, you can contact the social worker or living donor advocate and ask them to help you and explain the situation to your brother and his wife if you think that will help. you can give your permission for them to discuss your health evaluation with him and they should explain that it would be negligent and malpractice for them to take a kidney from a patient they feel may be at increased risk. The entire transplant programs all over the country would be at risk if centers were not responsible in their evaluations. They can also educate them on paired exchange so if your sister in law wants to test she can donate for your brother even if she is not compatible.
Sorry you are going through this. Glad you have uncovered a health issue that is treatable. focus on your future health. Wishing you a happy and healthy 2018.
Sherri