madisonsmom
New member
<img src="i/expressions/face-icon-small-confused.gif" border="0"><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>madisonsmom</b></i>
I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom</end quote></div>
I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom</end quote></div>