NKF's End the Wait!

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.

Hi Folks

Right On Rich!!!

My mind was made up right from the start. With nxstage and the promise of even better machines down the road. People today have the real choice of going about living a very full life without the need to go somewhere a dialysis center was nearby. Today with the nxstage we just a electric outlet or battery, anything to power the machine. I had and still have issues with these groups, to me they have only transplant or dialysis companies as sole purpose . Nothing wrong with that, we do live in American.

But we need help on a case by case base. Today as I see it, these groups work for the whole and don’t have time for a single dialysis consumer needing help. It’s up to single dialysis consumer to fight for his/her rights to a life style that each person sees best for them. right now I just started a third letter to WellSpan of York Pa to try and get them to understand. (Davita was far worse with WellSpan I see a chance to help in my own case ,but down the road with others) It my life, not theirs, the only way WellSpan gets the message is if I put it in a written format. Never in my entire life have I had to put things in writing. Up till now the Dr’s nurses etc seem to understand that They could only do or say so much. Since dialysis started the renal team wants to hold the consumer hand to cross the street. (more $$ as I see it, nothing really gained by it) Nothing wrong with that if a dialysis consumer wants or needs that, once more we are in American.

Bob O’brien