Alyssa had her transplant yesterday 10-26-10 at Rochester, NY. She was in the OR pretty much all day. I got a phone call from her dad around 2:00 pm saying the transplant was about completed and she had already made 150cc of urine in 30 minutes with her new kidney. That was really good news! She is the first adult in the US with aHUS to have a successful kidney transplant using the drug soliris. I am so happy for her and her family. It has been a long two years for them! It was amazing to watch science make advancements right before my eyes. We all need to continue to pray for her and her donor as the recovery process continues. And in your prayers please pray that HUS does not rear its ugly head in Alyssa. Yesterday was a miraculous day to me and I pray Alyssa has a lifetime of good days ahead!
Today, Madeline and I went to an early voting rally for Senator Lincoln here in Jonesboro and, we had the opportunity to meet here and shake her hand. Actually we hugged! She has worked very hard for the the National Kidney Foundation and Medicare with regards to transplants during her years in office. She was so nice and talked to Madeline and I for a good amount of time. I was really impressed with her. She was very interested in my story about dialysis and it was nice to meet a politician who listened.
This is an awesome story on my friend, Alyssa. You may remember me talking about her. We have the same blood disease and ironically were both sick and diagnosed in January of 2009. We met each other online shortly after and have been going through this process of kidney failure together. She is a very courageous woman and is having a kidney transplant at the end of this month. I am so happy for her! She will be one of the first people to use the drug Soliris to keep her from rejecting her new kidney. Her insurance company approved the use of the drug whereas my insurance company has denied me. I hope to visit her before her transplant. She is a pioneer in the world of kidney transplants and I am so proud of her!!!!!!!!! Please say a prayer for her that her transplant goes smoothly and she has a fast recovery!!!
I went to PD clinic today and everything went great. My lab draws went smoothly. No collapsing, rolling or bursting veins today. I am just so pleased with my Memphis clinic. I think being a part of a Fresenius clinic is the BEST decision I have made with regards to dialysis. And my nephrologist is so engaging and attentive. I have never met a doctor.....especially a specialist, who takes their time and is so patient. My doctor is amazing and I strongly encourage any patient with a chronic illness to find a doctor with these characteristics. There are so many docs out there but everyone deserves to be treated the way I am treated by this doctor. It really means a lot. The entire staff of nurses, dietitian and social worker are so helpful and professional. I feel so safe and in good hands. I feel truly blessed to have found a dialysis clinic with such high standards. So thank you East Memphis Fresenius!!!
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.