Sorry, it has been a few days. I received a lot of information on what is to come the next few months. Some I already knew, some I didn't. I may divide my info into 2 or 3 segments. :)
First, let me just say it was an emotional day when I sat there with others from different walks of life.....we all have one final destination and that is to get a kidney transplant and live a longer healthier life. Before it started I looked around the class and noticed that there were young and old, male and female, Caucasian, African American, and Asian. Many came as I did with family to help deal with all this info given to us. I couldn't help the tears rolling down my face.
They talked about 3 areas. Steps in getting qualified for transplant, living donation, and financials. I am nervous that my high ANA (antibodies) will disqualify me for transplant. In fact, each year only 6.5 percent of highly sensitized patients receive a transplant. Most remain on dialysis indefinitely, without hope for a life-saving transplant, with grim financial implications and poor quality of life. I asked this question and the transplant coordinator suggested for me to send my latest lab work from the rhuematologist. She said that they may place me on hold for several months to get my numbers down with medicine. This would be OK, because I am not planning on getting this done until sometime next year. She assured me that there were others with similar circumstances and transplant was a success for them. We were told that we should hear from them and meet with the transplant team in the next 4-6 weeks to see if I am transplant worthy. I have to get a pap smear and TB test done prior to meeting with them too. I don't have to get other pre-tests done because I am below the age requirement. Of Course when I get to MUSC I will have a series of outpatient tests like chest xray, EKG, and a few other tests that are done with the transplant team. After you meet with the team (which includes a financial person to see if you can afford having a transplant and all the medicine afterwards) they discuss you in a meeting and see if you are a "true" candidate. And yes......financials are a big part of it...sad, but true.
When you are accepted they place you on the transplant list. (cadaver list) Even though we are going for a living donation I will be placed on this list too. (Just in case I can't find a living donor that matches with me). There are over 600 people waiting for a kidney transplant in South Carolina and the average wait is between 2-3 years for a cadaver kidney. I have been told it would be less than 2 years before I would need dialysis. I found out that the kidneys are given out on a point system....the longer you are on the list, the more points you accumulate. The only time that you would be pushed ahead of others is if you were a child, you had been waiting for a long time and going to die soon, or if you were a 100% perfect match. She had a man who was deemed transplant worthy and in less than 18 hours after he was put on the national list he had a new kidney because it was a PERFECT match. Amazing!
I will talk about living donation in the next day or so......
Thanks for listening! AND PRAY that my high antibodies come down. I don't want to be in that high sensitized category!