We decided to proceed with a transplant evaluation. It is a very long process. But I began to prepare for it. Going to the dentist to check for cavities, going to Barnes to begin a lot of testing and meet with a team of transplant experts. My family, Chris, Mom, Dad and Matt all were tested to see if I had any family matches. I am told family matches are rare. Turns out I have 3 matches. They test 6 different factors. My mom and dad were both a 4/6 match and Matt was 5/6 match. Chris is a different blood type but he was still a 3/6 match. Now I had the big decision of choosing someone to proceed forward with. After lots of souls searching and praying I chose Matt. He had been adamant about donating a kidney from day one. He was a very close, near perfect match and he is the youngest. And I think he would have been mad at me if I chose anyone else. I met with a brilliant and the most compassionate nephrologist at Barnes for a transplant eval. It would turn out that my case had to go before a transplant board and in the end I was rejected due to the HUS blood disorder. There was about an 80% chance HUS would attack my new kidney. I was really sad for a while. But this doctor I talk so well about from Barnes wasn't finished yet. She actually wanted me to go to the Mayo clinic in Rochester, MN for a second opinion.
The first case review from Mayo, I was rejected. But this wonderful Barnes doctor wrote a letter describing my age and determination and I was able to get in to see some of the countries best nephrologists and brilliant hematologists. So off to Minnesota Chris and I would go in December 2009!
This doctor from Barnes on my transplant evaluation team is amazing. She should be the role model for all doctors. I could tell she really cared about me as a person. She would go above and beyond the call of duty to help me out. I may not ever get a kidney, but I feel confident that if I ever do, she will have had something to do with it. Her love for medicine is beautiful and I trust her with ever ounce of my being. She is in this profession for the right reason! Even when she had to deliver me with bad news, she still gave me hope and would make it possible for me to explore the Mayo route.
My hematologist at Barnes is wonderful too. He is very easy to communicate with, he is great about calling or emailing me back to stay in contact and he just brilliant. I can really tell he has a compassionate soul and wants to see me be successful. I always feel in good hands in STL!
Linda Burke left a comment for Jeff Wilhelm
6 years ago
So, basically Barnes told you the exact same thing your home nephrologist did, and Mayo rejected you at first and had to be persuaded to see you, and then still told you the same thing your home nephrologist did..yet they're still brilliant and wonderful and the home nephrologist is still horrible, even though he told you the same thing they did?
ReplyDeleteWell, you can certainly look at it like that if you want to. In reality, Barnes did not tell me right off the bat that a transplant would never be possible. Barnes also took the time out of their very busy schedule to see that I did, at least, get an evaluation from the Mayo clinic.
ReplyDeleteAnd Mayo never said the transplant discussion was over. I speak with the Mayo physicians often and they keep me posted on the latest advancements being made in the HUS/transplant area. They were very optimistic that I would see a transplant someday and that is the little bit of hope I need.
Also, Barnes has saved my life twice. The first being with the HUS and the second when my blood pressure was so high that it caused a brain hemmorage and 3 seizures.
So, if you feel comfortable and confident that you would rather take the opinion of the home nephrologist instead of some of the countries best and brightest, then that is your choice. I think you might feel different if it was your body or a family member.