My son is 34 years old and this past March, he was evaluated in St. Louis for a lung transplant. He has had a very bad year, with two serious lung infections, one with hemoptysis, and his doctor recommended to him last fall that he be evaluated.
The results were that he was not urgently in need of a transplant but that he needs to seriously begin preparing -- increase weight, get into pulmonary rehab, etc. His FEV1 was 25% and his Lung Allocation Score was around 35. He was also told that he needs to have supplemental oxygen all the time now, when before he was mainly using it at night.
Since he came home, things have not gone well for him, and he seems to be getting weaker and weaker. He has just finished up a round of home IV's that did not help him much at all. For some reason, and it may be a misunderstanding from what someone in St. Louis told him... he seems to think that his lungs are too scarred for chest percussion or his TherapyVest to help him clear out his secretions. I have been trying to convince him otherwise because I think he is wrong. He has promised to talk to the CRT who his doctor has recommended to handle his pulmonary rehab progam, this coming week and hopefully get started on it since it was the #1 requirement he was given in St. Louis.
I would really like to know, from those of you who have gone through the same thing he is going through right now, what things you did or did not do to help yourself become strong enough to prepare yourself for the transplant. Did you do extra breathing treatments, CPT's, etc. in order to keep your lungs as clear as possible? It seems that it would be more important than ever to do these things, but something or someone has given him the idea that it is pointless. He has started back on TOBI inhaled antibiotics and uses Pulmozyme and Saline for his breathing treatments, in addition to Xopenex. He says he is ready to become listed for transplant now, but was not when he was in St. Louis in March. I am trying to help him all that I can, but as a mother of an "adult child" I am very limited in what I can do. He is married and has a wife who has more influence that I do, but she also seems to have the same opinion that he does about the CPT. I would appreciate any input that anyone here can give. Thanks so much!
The results were that he was not urgently in need of a transplant but that he needs to seriously begin preparing -- increase weight, get into pulmonary rehab, etc. His FEV1 was 25% and his Lung Allocation Score was around 35. He was also told that he needs to have supplemental oxygen all the time now, when before he was mainly using it at night.
Since he came home, things have not gone well for him, and he seems to be getting weaker and weaker. He has just finished up a round of home IV's that did not help him much at all. For some reason, and it may be a misunderstanding from what someone in St. Louis told him... he seems to think that his lungs are too scarred for chest percussion or his TherapyVest to help him clear out his secretions. I have been trying to convince him otherwise because I think he is wrong. He has promised to talk to the CRT who his doctor has recommended to handle his pulmonary rehab progam, this coming week and hopefully get started on it since it was the #1 requirement he was given in St. Louis.
I would really like to know, from those of you who have gone through the same thing he is going through right now, what things you did or did not do to help yourself become strong enough to prepare yourself for the transplant. Did you do extra breathing treatments, CPT's, etc. in order to keep your lungs as clear as possible? It seems that it would be more important than ever to do these things, but something or someone has given him the idea that it is pointless. He has started back on TOBI inhaled antibiotics and uses Pulmozyme and Saline for his breathing treatments, in addition to Xopenex. He says he is ready to become listed for transplant now, but was not when he was in St. Louis in March. I am trying to help him all that I can, but as a mother of an "adult child" I am very limited in what I can do. He is married and has a wife who has more influence that I do, but she also seems to have the same opinion that he does about the CPT. I would appreciate any input that anyone here can give. Thanks so much!