Chris and I are back from our trip to Washington, DC. It was the first time, since being on dialysis, that I have flown with my dialysis machine. Everything went very smooth and I was able to take my machine on the plane with me. First, we did a lot of sightseeing. We saw the Capitol, the White house, the monuments, visited the Smithsonian museums and ate at some very yummy restaurants. On my third day there, I met with the National Kidney Foundation (NKF) and the other advocates who were there representing their state. I have made friendships with the other advocates that will last a lifetime. It was so nice to be in a room with people like me, who truly understand what I am going through. Everyone had very moving stories about their life on dialysis. As I was listening to their stories, I realized there are many terrible dialysis clinics around the country, like the one I originally started off with. How do these dialysis clinics stay open? How do they not kill more people due to cross contamination and laziness? People need to take a very close look at the people and facility in charge of their health care.
Meeting with members of Congress was empowering. It felt really good to tell my story. The members were very engaging in my story, asked questions and wanted to know what they could do to help. I told them that patients should have a right to choose their modality of dialysis treatment. Just because the social worker doesn't want to order the home dialysis machine or the doctor failed to inform you about it, is no reason any patient should be denied their right to choose. The members were in agreement with me that we SHOULD choose whether we want to do in clinic hemodialysis or home dialysis. It was a very successful day on Capitol Hill for dialysis.
I look forward to continuing my advocacy for patients rights. In the age we live in where everyone is entitled to and has the right to do whatever, our basic human rights for good, quality health care should not suffer. Helping other dialysis patients now and in the future is very therapeutic to me and I hope to make their journey in the world of dialysis a bit easier. If they've gotta be on dialysis, it should be on the modality of their choice.
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