Hello again, I have been reading these posts today and quite frankly I am stunned to read about the care some have received from their transplant teams/hospital staff! We have had excellent care even if it was for several different reasons. My daughter was sixteen when we saw our first transplant group; she turned down the new heart as soon as they told her she would have to get rid of all of her pets. At that point, it was a no go for her, her choice. The whole journey has been hard adding to the fact I worked as an EKG Supervisor as well as a Medical assistant...in other words, I "knew" what was going on and sometimes knowledge is not a good thing. It can certainly cause problems with doctors who are new where you understand your child's heart problem more than they do! Ouch! Having that knowledge made me question the possibility of my daughter having some kind of a heart problem when she was 4 years old; the problem was that a few weeks after her 3rd birthday, she developed Juvenile Rhuematoid Arthritis. From that point on I began to feel like we lived in her pediatrician's office...she was always getting sick and the drugs she was taking caused her to start bleeding internally when she was six. She was admitted to the hospital at RAF Lakenheath (we were stationed in England for 7 years). During that hospitalization, the nurses noticed her heart rates were around 40 beats a minute. They did an EKG and thought the machine was broken the complex being one that no one had ever seen before. They repeated the EKG, same result so they did an echo. There were 2-3 electrical issues with her heart and all of her ventricular walls were already thicker than a grown man's walls. They said she had Hypertrophic Cardiomyopathy and sent her straight away to Great Ormond Street for their opinion on her. They said she was fine, probably because I questioned the things they were telling us! At seven we were living in San Antonio to be near the Air Force medical center, Wilford Hall. They sent her to Texas Children's Hospital and she had an electrical open heart surgery there to get get rid of one of the tracts' she had developed a couple of new tracts. At eight she was back in Houston to have a duel chamber pacemaker put in because her heart was beating in the 30s range which can cause the heart to stop beating. At the same time all of this was going on she had a stroke at 10 (occipital) caused by a blood clotting problem that no one knew she had! She had a problem with her kidneys and a problem with her muscle strength and co-ordination. Her EMGs were abnormal, but her muscle biopsy came back normal for Mitochondrial Disease. Those poor doctors had a lot to try and put up with! By the time she was 22 she was dying and could hardly get from one room in our house into the next, she could hardly do anything with haviong chest pain 100% of the time, she developed life threatning arrhythmias and her thinking ability was impaired. That was the hardest thing to see because she had such a mind; she could play chess at 3 and beat her father at times. She was advanced in the British school system and she was doing algebra at 6. Watching her incredible mind going downhill was horrible! After her transplant, one of the first things she said to me was "Mom!! I can do math in my head again!!" She was SO excited because that was something that was robbed from her. She recieved her heart in the wee hours of July 5th, we got the call on the 4th of July. It was a new beginning for all of us. There were things that she hated prior to her transplant that she loved afterward like tomatoes and spicy foods. She told me that her donor came to her one night in her dream and explain a few things that he wanted her to know. She was very surprised by that visit. There is so much more to this story, that's why I am writing a book about her life. I have to go for now. Keep in touch and let me know how you are doing; if you need an ear, I am here. Take care.