Tuesday, September 23, 2008
Melissa,
Thank you so much for your honesty and courage to share your sad thoughts with all of us. We would all be lying if we said that the the thought of your death hadn't crossed our minds. It sounds like you are getting a great deal of clarity, something that most of us don't get to do. I applaud you for venturing into unsettled waters to come face to face with your fears. It feels important to me that you know that your life is worth something, and that all you've done matters. Thank you for giving us the chance to face our fears too. You are amazing, brave and inspirational. I think in your next entry in the journal you might want to answer all the questions from this one. Like........What thoughts do you want to be rembered by? What flowers do you want at your grave? What memories are important to you? What is the reason you are going back to church? What do you believe? What lesson are you teaching all of us. Maybe, what do you want us to get? I love you so much, my heart is aching just thinking of all you are going through. Keep moving through it. T
My Sad Day
I wondered all day what makes a person think the things they do? All day I had a feeling that this is the week where I am going to find out where I go for my transplants. Am I ready to pack up my cloths and pictures to take with me? How is it going to be living somewhere else away from my family and friends, when now is the time I am going to need them the most in my life.. Did I make this all happen to me in some way? Do I really have to make such a life decision? A decision that could cost me my own life? If I was getting married I could always get a divorce. :o) I Cant really give a heart back cause it decided it didn't want to work in my body. Why does a person wonder what flowers people will leave at there grave site? Am I so focused on my funeral arrangments that I can't think about what it will be like not having fluid on me, and feeling better. Will the last person I laughed with be able to remember that moment forever? Did I start going back to church cause I am scared of dieing? Or do I really need to be close to God, cause I am in his hands when it comes right down to it. I will be brutely honest here, my heart aches of all the fears, sadness, hopes and the "what if's?" Did God just send me down here for a short while to teach you all a lesson in life? That is to love your own life cause you never know what tomorrow brings. I was sick to my stomach all day and I felt at any moment like I might throw up. If I do die don't focus on my death. I want you to think about all the good I have brought to your life. To be gratful for one thing each day that you did. Why is it that people tell you what they mean to them at their funeral but not face to face or in a letter. I hope I changed your life in some way. You have made me wh o I am today because of you....."ALL OF YOU"
Melissa
Saturday, September 20, 2008
Hello Everyone,
I just wanted to give a quick update on me. Its been a couple of weeks since I have been to the doctors and been taking my life day by day. I have NOT heard anything from them on where I will be having my heart/liver transplant. I promise I will let everyone know as soon as I find out. My San Diego trip was one of the best vacations I have ever been on. The wedding I went to was not only a blast but has to go down as the wedding of the century.... "Well, in my book that is" Now getting ready for my MADONNA Concert on November 4, in San Diego, California. Thank you everyone for your prayers and who check this daily. To the people I have never met if you want to write in my guest book please do so. The comments and prayers are what keeps me going. Thank u everyone
love,
Honeybee
I just wanted to give a quick update on me. Its been a couple of weeks since I have been to the doctors and been taking my life day by day. I have NOT heard anything from them on where I will be having my heart/liver transplant. I promise I will let everyone know as soon as I find out. My San Diego trip was one of the best vacations I have ever been on. The wedding I went to was not only a blast but has to go down as the wedding of the century.... "Well, in my book that is" Now getting ready for my MADONNA Concert on November 4, in San Diego, California. Thank you everyone for your prayers and who check this daily. To the people I have never met if you want to write in my guest book please do so. The comments and prayers are what keeps me going. Thank u everyone
love,
Honeybee
Tuesday, September 9, 2008
Wednesday, September 3, 2008
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
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
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