I was reading a thread in one of my dialysis and transplant groups started by a man who was hurt that no one in his large extended family had ever stepped up to give him a kidney. He said that in the beginning a few said they would be tested, but whenever he mentioned it, they would change the subject. He was upset because it’s hard enough to find a donor, but to have people say they would be tested, then never say anything about it again is frustrating, especially if you’re on dialysis already.
I can relate. Though my parents and my brother can’t donate because they don’t match, I have 20+ cousins on both sides of my family. Some of them are ruled out because of their own health issues, but the rest, except one, has stayed quiet. That one said no. Though she was mean about it, I give her credit for at least answering the question. No one else has.
This fellow was wondering if he should just write off these family members, because they seemed to ignore his plight. I had no real answer for him. I don’t think I could just turn my back on my family, even if they didn’t or didn’t want to understand what it is that I’m doing, but I can understand the feeling of abandonment that he has. When the people who are supposed to love you the most leave you doing an invasive treatment that keeps you alive, without even trying to do anything to make it better for you, you wonder how much they value you.
I think, however, that it’s not that they don’t value you. It’s more that they don’t understand what you do, or what they need to do to help. It’s up to us as patients to educate those around us. It’s why I post articles about organ donation on my facebook page and twitter. I post images that explain who you cna donate to by blood type, or links to organ donor awareness organizations that can explain how donation works much better than I ever could.
For me, it doesn’t really matter anymore. I’ve been “on hold” on the transplant list since February of 2013, which basically means that I’m on the transplant list, but if a kidney should come up that matches me, I won’t get it. I can’t have a live donation unless I’m active on that list, and I don’t know when that will be again, if ever.
I believe that my family loves me, but they don’t really understand what it is I do, and they rarely see me on my “bad days” so they figure I must be doing okay. My guess is, that that is how it is with most families. Unless they spend a great amount of time with you, they don’t really know how hard dialysis really is, and think it’ll be okay for you to wait years for a kidney that matches to come up. it’s not abandonment, just unfamiliarity and fear.