Hello Friends,

Yesterday was the appointment at the Mayo Clinic to receive all of the news about the Liver and moving forward with the Heart Transplant. The mood was mostly good on the drive in. Our first appointment was with Dr. Steidley, the heart doc. While we were waiting we all placed our bets on what the outcome was going to be. Melissa said, she'll need a heart/liver transplant and she'll need to do the medication again. Judy said, praying for better liver results, but she'll need to do the medicine again. I said I thought she would need the medicine again, but that the liver would be better. Dr. Steidley did some vitals and small talk, Melissa gave him her daily weight chart. She weighed 105 today. Her blood pressure was 88/52. She is pretty full of fluid. They talked about taking another Zaroxolyn today to pull some fluid off. He also changed her Lisonpryl to 5 instead of 10, hoping to increase her blood pressure and give her more of a pump to get fluid off. He is adding a medicine called Rivatio, that is generic for Viagra. (Yes, of course we asked......it will not do the same thing to her as it does a man. It was first used for Pulmonary Hypertension Patients to pull of fluid, then they found the wonderful side effect for men) Then Dr. Steidley got right to the results. Melissa's liver was indeed worse than two years ago, it is already showing signs of cirrhosis. She needs a heart/liver transplant. He assured us that the outcomes for heart/liver are the same as for just a heart. Here is the bad part. They have not done one of these here, so Dr. Steidley will check Melissa insurance, and then choose from there which centers do Adult/Pediatric Congential Heart/Liver transplants. Phew!!!! This floored us. We were all teary eyed and very anxious by now. He gave us the straight news about how difficult Melissa's case is. We didn't leave his office feeling very good. For now, change medicine and wait for a center to accept her. We went to the waiting room and mostly cried. We had about 30 minutes until the Liver guy. (Vomiting came to mind) We talked about what centers would be best for our family. Mayo Clinic in Rochester and UCLA in California. (That is what we are praying for now) Melissa's dad lives in Minnesota and California is close. When we get to Dr. Aqel, he gives us a bit more hope. If Melissa didn't need a heart transplant her liver would probably serve her well for years to come. There are 4 things that lead to the death of a liver. Medication that is filtered through the liver, alcohol, weight gain and here is the big one.....surgery. Melissa will need a liver that works at full capacity for her heart transplant, that is why they are opting for both. The transplant would put to much stress on the one that is currently working at about 30%. If the liver fails, the heart will fail too. He told us that the liver is the last thing to worry about now. She needs both and he can't imagine anyone turning her down. She is young, she is excellent with her care and has a very strong supportive family. HELL YA!!!! So now we are waiting for them to call and say someone is interested in taking her case and then she will have to go there to interview and probably be poked some more. I will wait to write what that will entail after we know where. Every center is different as to how near they need to be and for how long. Oh yeah, she will not have to do the medicine for the liver now. But, if the center who takes her wants her too, we will re-visit this option at that time.

I already have my fund raising hat on. I'll be letting everyone know about that too.
Keep sending great vibes to Melissa, I am still looking for more pictures to put on here. So feel free to send me some. Terri