The NKF has started a new initiative to increase the number of organs available for transplantation. How could one disagree with what they are trying to accomplish! However, I am always irked by the organization because it doesn’t do enough for dialysis patients in my estimation. I did go to one seminar they had in the Chicago area, but most of their talk is always about transplantation, especially equated it as the Gift of Life. I’m sorry, but I already believe I have the Gift of Life, and don’t want to feel or implied by someone I don’t. This was the reply I sent to the NKF. Not only did I send it as Feedback, which I’m not sure they will publish, but also to Jayne Mardock [takeaction@kidney.org], the Congressional Relations Director whom I received the announcement from.
Here is what I wrote:
I fully support the effort and agree with all of the recommendations. I especially think the recommendation of partly paying the funeral expenses of a donor is ingenious. But, and this is a big BUT, I don’t believe transplantation is the only Gift of Life, and this so irks me about NKF. I believe good dialysis is also a Gift of Life. I am a home hemodialysis patient and have , in fact, decided against a transplant. I prefer somebody else get the organ meant for me. As the moderator of NxStageUsers, I know how well others are doing. I am living a good life and expect to for many years. With home dialysis available, and something NKF doesn’t really promote, patients can have a new lease on life. I’m not putting down transplantation. I just want the NKF to recognize the significance of optimal dialysis and begin to truly support it. It really appears that for the NHF it’s transplantation or nothing. Yes, I know there are programs from time to time, but you may not realize how the NKF comes off to people on dialysis.