Thursday, May 21, 2009
Day Two Pittsburgh- May 20, 2009
Today they met with the Liver doctors and the conversation was more of the same. The Liver team is second in line here and they have to follow what the heart team dictates. Since the heart is what is driving the transplant They too want to be responsible and watch her blood work and Quality of life. When things start changing they will list her. On another note, a new medicine is going for FDA approval soon that will help the liver. If it gets approved and they can buy time, she may not need a liver transplant when the time comes. Upon speaking with Melissa after her appointments today, I do believe she is pretty clear that she wants to wait also. I heard some relief. Thank you all for joining the cause, please stay tuned for more. Terri
Tuesday, May 19, 2009
Pittsburgh May 19, 2009
Well, I was able to listen in on the phone call with the Dr’s in Pittsburgh. Two of them spoke and I am going to write a synopsis of what they said.
Basically, they really talked to Melissa about her quality of life. What she does, how much she can do, what are her limitations, how often she has been in the hospital, her keen sense of knowing when there is something not exactly right with her blood work, and how she is managing her fluid retention and new medicines to handle the fluid. They spoke of the risks involved. Then they talked about the importance of balancing the risks. They spoke about how much better she is today than one year ago with the change in medication. (They changed a lot of medication when they first started talking transplant, trying to help Melissa manage the fluid retention). The one Dr. asked her what her gut feeling was and she replied, “not to do it now”. He stated that her gut feeling was right! Her survival rate is about 80% for the first year. Her 5 year survival rate is 75%. Her ten year survival rate is 50%. If they can keep her quality of life as is, then we can buy time. Maybe, it will only be a few months, maybe it could be a few years. Never the less we buy time! They were sure that with Melissa’s knowing of her body and her gut feeling that she will know when the time is right. There is another appointment tomorrow, but my feeling is that it will be more of the same. They still need to take all of this to the committee and get back with us. They are telling Melissa that the risks are high and that she hold the decision on when is the right time. All she needs to do is make a call, jump on a plane and once in Pittsburgh they will list her. I do believe this will be a long process. Melissa is a bit overwhelmed to say the least. It is a life or death decision and responsibility. I know this girl, and I know she can do it. She knows her body better than anyone I have ever met.
Keep praying……..keep writing………keep loving……..Terri
Basically, they really talked to Melissa about her quality of life. What she does, how much she can do, what are her limitations, how often she has been in the hospital, her keen sense of knowing when there is something not exactly right with her blood work, and how she is managing her fluid retention and new medicines to handle the fluid. They spoke of the risks involved. Then they talked about the importance of balancing the risks. They spoke about how much better she is today than one year ago with the change in medication. (They changed a lot of medication when they first started talking transplant, trying to help Melissa manage the fluid retention). The one Dr. asked her what her gut feeling was and she replied, “not to do it now”. He stated that her gut feeling was right! Her survival rate is about 80% for the first year. Her 5 year survival rate is 75%. Her ten year survival rate is 50%. If they can keep her quality of life as is, then we can buy time. Maybe, it will only be a few months, maybe it could be a few years. Never the less we buy time! They were sure that with Melissa’s knowing of her body and her gut feeling that she will know when the time is right. There is another appointment tomorrow, but my feeling is that it will be more of the same. They still need to take all of this to the committee and get back with us. They are telling Melissa that the risks are high and that she hold the decision on when is the right time. All she needs to do is make a call, jump on a plane and once in Pittsburgh they will list her. I do believe this will be a long process. Melissa is a bit overwhelmed to say the least. It is a life or death decision and responsibility. I know this girl, and I know she can do it. She knows her body better than anyone I have ever met.
Keep praying……..keep writing………keep loving……..Terri
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