Preparing for transplant - importance of CPT and airway clearance

[nmr8177]

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!

 

[nmr8177]

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!

 

[nmr8177]

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!

 

[nmr8177]

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!

 

[nmr8177]

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.
<br />
<br />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.
<br />
<br />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.
<br />
<br />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!

 

[coltsfan715]

Firstly if your sons condition has declined since his evaluation you need to call his center back. ANY change needs to be reported to them and they can possibly bring him back in for some other tests. His listable status may have changed since his evaluation.

As for the other things. I did everything I could just to breathe better. I didn't really think whether or not it would work I just hoped it would. I did aerosol treatments as directed and increased my albuterol to eery 4 hours. I did my vest for hours instead of just short intervals. I was basically just trying to stay somewhat okay. I will admit the CPT with the vest did not help so much but I got a percussor and my mom and step dad would use that on my back for me and that worked pretty good considering.

One thing I will say is keeping your lungs clean or as clean as possible is VERY important because the less bacteria you have in your lungs at the time of transplant it bodes better for the possible prevention of infection immediately post. As my surgeon told me (because I cultured MRSA and Psuedo pre transplant) was that it is possible when they remove the old lungs that some bacteria can "spill" out and it can cause other infections post transplant or sepsis dependant on the bacteria and such.

Rehab helps but can be difficult - my suggestion is do what you CAN and try to improve don't be mad when you can do what others can. If you can't improve then try to maintain. He may think it is pointless because it isn't vastly improving his health anymore like the meds and treatments used too, but it IS more important now to do what you can to at the very least maintain your health and make sure you are healthy enough for the transplant.

Good Luck
Lindsey

 

[coltsfan715]

Firstly if your sons condition has declined since his evaluation you need to call his center back. ANY change needs to be reported to them and they can possibly bring him back in for some other tests. His listable status may have changed since his evaluation.

As for the other things. I did everything I could just to breathe better. I didn't really think whether or not it would work I just hoped it would. I did aerosol treatments as directed and increased my albuterol to eery 4 hours. I did my vest for hours instead of just short intervals. I was basically just trying to stay somewhat okay. I will admit the CPT with the vest did not help so much but I got a percussor and my mom and step dad would use that on my back for me and that worked pretty good considering.

One thing I will say is keeping your lungs clean or as clean as possible is VERY important because the less bacteria you have in your lungs at the time of transplant it bodes better for the possible prevention of infection immediately post. As my surgeon told me (because I cultured MRSA and Psuedo pre transplant) was that it is possible when they remove the old lungs that some bacteria can "spill" out and it can cause other infections post transplant or sepsis dependant on the bacteria and such.

Rehab helps but can be difficult - my suggestion is do what you CAN and try to improve don't be mad when you can do what others can. If you can't improve then try to maintain. He may think it is pointless because it isn't vastly improving his health anymore like the meds and treatments used too, but it IS more important now to do what you can to at the very least maintain your health and make sure you are healthy enough for the transplant.

Good Luck
Lindsey

 

[coltsfan715]

Firstly if your sons condition has declined since his evaluation you need to call his center back. ANY change needs to be reported to them and they can possibly bring him back in for some other tests. His listable status may have changed since his evaluation.

As for the other things. I did everything I could just to breathe better. I didn't really think whether or not it would work I just hoped it would. I did aerosol treatments as directed and increased my albuterol to eery 4 hours. I did my vest for hours instead of just short intervals. I was basically just trying to stay somewhat okay. I will admit the CPT with the vest did not help so much but I got a percussor and my mom and step dad would use that on my back for me and that worked pretty good considering.

One thing I will say is keeping your lungs clean or as clean as possible is VERY important because the less bacteria you have in your lungs at the time of transplant it bodes better for the possible prevention of infection immediately post. As my surgeon told me (because I cultured MRSA and Psuedo pre transplant) was that it is possible when they remove the old lungs that some bacteria can "spill" out and it can cause other infections post transplant or sepsis dependant on the bacteria and such.

Rehab helps but can be difficult - my suggestion is do what you CAN and try to improve don't be mad when you can do what others can. If you can't improve then try to maintain. He may think it is pointless because it isn't vastly improving his health anymore like the meds and treatments used too, but it IS more important now to do what you can to at the very least maintain your health and make sure you are healthy enough for the transplant.

Good Luck
Lindsey

 

[coltsfan715]

Firstly if your sons condition has declined since his evaluation you need to call his center back. ANY change needs to be reported to them and they can possibly bring him back in for some other tests. His listable status may have changed since his evaluation.

As for the other things. I did everything I could just to breathe better. I didn't really think whether or not it would work I just hoped it would. I did aerosol treatments as directed and increased my albuterol to eery 4 hours. I did my vest for hours instead of just short intervals. I was basically just trying to stay somewhat okay. I will admit the CPT with the vest did not help so much but I got a percussor and my mom and step dad would use that on my back for me and that worked pretty good considering.

One thing I will say is keeping your lungs clean or as clean as possible is VERY important because the less bacteria you have in your lungs at the time of transplant it bodes better for the possible prevention of infection immediately post. As my surgeon told me (because I cultured MRSA and Psuedo pre transplant) was that it is possible when they remove the old lungs that some bacteria can "spill" out and it can cause other infections post transplant or sepsis dependant on the bacteria and such.

Rehab helps but can be difficult - my suggestion is do what you CAN and try to improve don't be mad when you can do what others can. If you can't improve then try to maintain. He may think it is pointless because it isn't vastly improving his health anymore like the meds and treatments used too, but it IS more important now to do what you can to at the very least maintain your health and make sure you are healthy enough for the transplant.

Good Luck
Lindsey

 

[coltsfan715]

Firstly if your sons condition has declined since his evaluation you need to call his center back. ANY change needs to be reported to them and they can possibly bring him back in for some other tests. His listable status may have changed since his evaluation.
<br />
<br />As for the other things. I did everything I could just to breathe better. I didn't really think whether or not it would work I just hoped it would. I did aerosol treatments as directed and increased my albuterol to eery 4 hours. I did my vest for hours instead of just short intervals. I was basically just trying to stay somewhat okay. I will admit the CPT with the vest did not help so much but I got a percussor and my mom and step dad would use that on my back for me and that worked pretty good considering.
<br />
<br />One thing I will say is keeping your lungs clean or as clean as possible is VERY important because the less bacteria you have in your lungs at the time of transplant it bodes better for the possible prevention of infection immediately post. As my surgeon told me (because I cultured MRSA and Psuedo pre transplant) was that it is possible when they remove the old lungs that some bacteria can "spill" out and it can cause other infections post transplant or sepsis dependant on the bacteria and such.
<br />
<br />Rehab helps but can be difficult - my suggestion is do what you CAN and try to improve don't be mad when you can do what others can. If you can't improve then try to maintain. He may think it is pointless because it isn't vastly improving his health anymore like the meds and treatments used too, but it IS more important now to do what you can to at the very least maintain your health and make sure you are healthy enough for the transplant.
<br />
<br />Good Luck
<br />Lindsey

 

[nmr8177]

Thank you, Lindsey. I really believe he could have been listed when he was evaluated in March but he was not ready to make the committment and had hope that he could get better and live a while longer with the lungs he has. The doctors in St. Louis did not sugar-coat anything and told him (and us) that lung transplant is not a cure and often does not have a good outcome. Because his PFT's have stayed relatively stable, in the 25% range, for several years... they advised that he continue to maintain this for as long as possible. They also encouraged him to get started on a good pulmonary rehab/exercise program and gave him some recommendations for improving his nutrition and helping him gain weight and get stronger.

He was hopeful after that meeting, and we were relieved that his kidney, liver and heart were in good shape. He does have some degree of pulmonary hypertension but his heart has managed to handle it well. The supplemental oxygen is supposed to help with this and prevent further damage to his heart from what I understand.

After he got back home, however, he and his wife and his baby all had an intestinal virus and he didn't feel like he could get started on his exercise program then. His wife was also recovering from surgery on her shoulder and has had other physical challenges as well. He was not really able to focus on his own problems because he was so worried about her. A week after he turned 34, he went to the doctor and started back on IV antibiotics at home. He may have needed to be in the hospital, but he doesn't want to leave his wife and she doesn't want to leave their son.

My husband and I have been under quite a financial strain because of all the help our son has needed, so I returned to work full time last year. If things were different, I could do more to help out with their day-to-day needs. They live about 25 miles away.

Anyway, I think my son is just feeling overwhelmed... not only for himself but for his family, and he is tired. He says now, though, that he thinks he is ready to try for a transplant but he has felt so bad physically that he doesn't have an appetite or the strength to comply with the recommendations to start the rehab program.

The CPT treatments (he has a vest) are something he could do at home, as well as increasing the frequency of his breathing/albuterol treatments. So this has been my suggestion but so far he has not been very receptive. I am praying that he will talk to the respiratory therapist his doctor recommends, and that the RT will convince him of his need to work harder to get the mucous up out of his lungs. When I am able, I will pass the information you gave me on to him. I wish he would participate in a forum like this but he hasn't so far.

Thanks again. I will look forward to hearing from anyone else who has input or suggestions as well.

Naomi

 

[nmr8177]

Thank you, Lindsey. I really believe he could have been listed when he was evaluated in March but he was not ready to make the committment and had hope that he could get better and live a while longer with the lungs he has. The doctors in St. Louis did not sugar-coat anything and told him (and us) that lung transplant is not a cure and often does not have a good outcome. Because his PFT's have stayed relatively stable, in the 25% range, for several years... they advised that he continue to maintain this for as long as possible. They also encouraged him to get started on a good pulmonary rehab/exercise program and gave him some recommendations for improving his nutrition and helping him gain weight and get stronger.

He was hopeful after that meeting, and we were relieved that his kidney, liver and heart were in good shape. He does have some degree of pulmonary hypertension but his heart has managed to handle it well. The supplemental oxygen is supposed to help with this and prevent further damage to his heart from what I understand.

After he got back home, however, he and his wife and his baby all had an intestinal virus and he didn't feel like he could get started on his exercise program then. His wife was also recovering from surgery on her shoulder and has had other physical challenges as well. He was not really able to focus on his own problems because he was so worried about her. A week after he turned 34, he went to the doctor and started back on IV antibiotics at home. He may have needed to be in the hospital, but he doesn't want to leave his wife and she doesn't want to leave their son.

My husband and I have been under quite a financial strain because of all the help our son has needed, so I returned to work full time last year. If things were different, I could do more to help out with their day-to-day needs. They live about 25 miles away.

Anyway, I think my son is just feeling overwhelmed... not only for himself but for his family, and he is tired. He says now, though, that he thinks he is ready to try for a transplant but he has felt so bad physically that he doesn't have an appetite or the strength to comply with the recommendations to start the rehab program.

The CPT treatments (he has a vest) are something he could do at home, as well as increasing the frequency of his breathing/albuterol treatments. So this has been my suggestion but so far he has not been very receptive. I am praying that he will talk to the respiratory therapist his doctor recommends, and that the RT will convince him of his need to work harder to get the mucous up out of his lungs. When I am able, I will pass the information you gave me on to him. I wish he would participate in a forum like this but he hasn't so far.

Thanks again. I will look forward to hearing from anyone else who has input or suggestions as well.

Naomi

 

[nmr8177]

Thank you, Lindsey. I really believe he could have been listed when he was evaluated in March but he was not ready to make the committment and had hope that he could get better and live a while longer with the lungs he has. The doctors in St. Louis did not sugar-coat anything and told him (and us) that lung transplant is not a cure and often does not have a good outcome. Because his PFT's have stayed relatively stable, in the 25% range, for several years... they advised that he continue to maintain this for as long as possible. They also encouraged him to get started on a good pulmonary rehab/exercise program and gave him some recommendations for improving his nutrition and helping him gain weight and get stronger.

He was hopeful after that meeting, and we were relieved that his kidney, liver and heart were in good shape. He does have some degree of pulmonary hypertension but his heart has managed to handle it well. The supplemental oxygen is supposed to help with this and prevent further damage to his heart from what I understand.

After he got back home, however, he and his wife and his baby all had an intestinal virus and he didn't feel like he could get started on his exercise program then. His wife was also recovering from surgery on her shoulder and has had other physical challenges as well. He was not really able to focus on his own problems because he was so worried about her. A week after he turned 34, he went to the doctor and started back on IV antibiotics at home. He may have needed to be in the hospital, but he doesn't want to leave his wife and she doesn't want to leave their son.

My husband and I have been under quite a financial strain because of all the help our son has needed, so I returned to work full time last year. If things were different, I could do more to help out with their day-to-day needs. They live about 25 miles away.

Anyway, I think my son is just feeling overwhelmed... not only for himself but for his family, and he is tired. He says now, though, that he thinks he is ready to try for a transplant but he has felt so bad physically that he doesn't have an appetite or the strength to comply with the recommendations to start the rehab program.

The CPT treatments (he has a vest) are something he could do at home, as well as increasing the frequency of his breathing/albuterol treatments. So this has been my suggestion but so far he has not been very receptive. I am praying that he will talk to the respiratory therapist his doctor recommends, and that the RT will convince him of his need to work harder to get the mucous up out of his lungs. When I am able, I will pass the information you gave me on to him. I wish he would participate in a forum like this but he hasn't so far.

Thanks again. I will look forward to hearing from anyone else who has input or suggestions as well.

Naomi

 

[nmr8177]

Thank you, Lindsey. I really believe he could have been listed when he was evaluated in March but he was not ready to make the committment and had hope that he could get better and live a while longer with the lungs he has. The doctors in St. Louis did not sugar-coat anything and told him (and us) that lung transplant is not a cure and often does not have a good outcome. Because his PFT's have stayed relatively stable, in the 25% range, for several years... they advised that he continue to maintain this for as long as possible. They also encouraged him to get started on a good pulmonary rehab/exercise program and gave him some recommendations for improving his nutrition and helping him gain weight and get stronger.

He was hopeful after that meeting, and we were relieved that his kidney, liver and heart were in good shape. He does have some degree of pulmonary hypertension but his heart has managed to handle it well. The supplemental oxygen is supposed to help with this and prevent further damage to his heart from what I understand.

After he got back home, however, he and his wife and his baby all had an intestinal virus and he didn't feel like he could get started on his exercise program then. His wife was also recovering from surgery on her shoulder and has had other physical challenges as well. He was not really able to focus on his own problems because he was so worried about her. A week after he turned 34, he went to the doctor and started back on IV antibiotics at home. He may have needed to be in the hospital, but he doesn't want to leave his wife and she doesn't want to leave their son.

My husband and I have been under quite a financial strain because of all the help our son has needed, so I returned to work full time last year. If things were different, I could do more to help out with their day-to-day needs. They live about 25 miles away.

Anyway, I think my son is just feeling overwhelmed... not only for himself but for his family, and he is tired. He says now, though, that he thinks he is ready to try for a transplant but he has felt so bad physically that he doesn't have an appetite or the strength to comply with the recommendations to start the rehab program.

The CPT treatments (he has a vest) are something he could do at home, as well as increasing the frequency of his breathing/albuterol treatments. So this has been my suggestion but so far he has not been very receptive. I am praying that he will talk to the respiratory therapist his doctor recommends, and that the RT will convince him of his need to work harder to get the mucous up out of his lungs. When I am able, I will pass the information you gave me on to him. I wish he would participate in a forum like this but he hasn't so far.

Thanks again. I will look forward to hearing from anyone else who has input or suggestions as well.

Naomi

 

[nmr8177]

Thank you, Lindsey. I really believe he could have been listed when he was evaluated in March but he was not ready to make the committment and had hope that he could get better and live a while longer with the lungs he has. The doctors in St. Louis did not sugar-coat anything and told him (and us) that lung transplant is not a cure and often does not have a good outcome. Because his PFT's have stayed relatively stable, in the 25% range, for several years... they advised that he continue to maintain this for as long as possible. They also encouraged him to get started on a good pulmonary rehab/exercise program and gave him some recommendations for improving his nutrition and helping him gain weight and get stronger.
<br />
<br />He was hopeful after that meeting, and we were relieved that his kidney, liver and heart were in good shape. He does have some degree of pulmonary hypertension but his heart has managed to handle it well. The supplemental oxygen is supposed to help with this and prevent further damage to his heart from what I understand.
<br />
<br />After he got back home, however, he and his wife and his baby all had an intestinal virus and he didn't feel like he could get started on his exercise program then. His wife was also recovering from surgery on her shoulder and has had other physical challenges as well. He was not really able to focus on his own problems because he was so worried about her. A week after he turned 34, he went to the doctor and started back on IV antibiotics at home. He may have needed to be in the hospital, but he doesn't want to leave his wife and she doesn't want to leave their son.
<br />
<br />My husband and I have been under quite a financial strain because of all the help our son has needed, so I returned to work full time last year. If things were different, I could do more to help out with their day-to-day needs. They live about 25 miles away.
<br />
<br />Anyway, I think my son is just feeling overwhelmed... not only for himself but for his family, and he is tired. He says now, though, that he thinks he is ready to try for a transplant but he has felt so bad physically that he doesn't have an appetite or the strength to comply with the recommendations to start the rehab program.
<br />
<br />The CPT treatments (he has a vest) are something he could do at home, as well as increasing the frequency of his breathing/albuterol treatments. So this has been my suggestion but so far he has not been very receptive. I am praying that he will talk to the respiratory therapist his doctor recommends, and that the RT will convince him of his need to work harder to get the mucous up out of his lungs. When I am able, I will pass the information you gave me on to him. I wish he would participate in a forum like this but he hasn't so far.
<br />
<br />Thanks again. I will look forward to hearing from anyone else who has input or suggestions as well.
<br />
<br />Naomi

 

[Buxxfan]

Hello Naomi,
Like your son, when I heard that I should be evaluated I was not ready but the more sick I became the more accepting I was to be listed. I was on the same regime your son is on (Vest, Pulmozyme, saline, Xoponex, and IV's)... When I did get on the list, my doc (Tampa General) said I needed to gain weight, keep up with all my treatments, and go to Pulmonary rehab. Gaining weight was the most difficult for me because #1 I have never been able to gain weight and #2 I had no appetite at all. I did drink as many of those Ensure drinks I could and that did help a little... The Vest was my CPT and I did go to rehab. Rehab was tough but I think it made a big difference. I did not force myself and did what I was comfortable with, even though it was not much (I was on alot of O2). I would walk on the treadmill, lift light weights, and just that little bit helped me gain some strength. The docs want you to be as strong as you can going into surgery. I also went to rehab post transplant... Just so you know the transplant was the best thing that has ever happended to me... I hope everything goes well for you and your son.

Take Care!

 

[Buxxfan]

Hello Naomi,
Like your son, when I heard that I should be evaluated I was not ready but the more sick I became the more accepting I was to be listed. I was on the same regime your son is on (Vest, Pulmozyme, saline, Xoponex, and IV's)... When I did get on the list, my doc (Tampa General) said I needed to gain weight, keep up with all my treatments, and go to Pulmonary rehab. Gaining weight was the most difficult for me because #1 I have never been able to gain weight and #2 I had no appetite at all. I did drink as many of those Ensure drinks I could and that did help a little... The Vest was my CPT and I did go to rehab. Rehab was tough but I think it made a big difference. I did not force myself and did what I was comfortable with, even though it was not much (I was on alot of O2). I would walk on the treadmill, lift light weights, and just that little bit helped me gain some strength. The docs want you to be as strong as you can going into surgery. I also went to rehab post transplant... Just so you know the transplant was the best thing that has ever happended to me... I hope everything goes well for you and your son.

Take Care!

 

[Buxxfan]

Hello Naomi,
Like your son, when I heard that I should be evaluated I was not ready but the more sick I became the more accepting I was to be listed. I was on the same regime your son is on (Vest, Pulmozyme, saline, Xoponex, and IV's)... When I did get on the list, my doc (Tampa General) said I needed to gain weight, keep up with all my treatments, and go to Pulmonary rehab. Gaining weight was the most difficult for me because #1 I have never been able to gain weight and #2 I had no appetite at all. I did drink as many of those Ensure drinks I could and that did help a little... The Vest was my CPT and I did go to rehab. Rehab was tough but I think it made a big difference. I did not force myself and did what I was comfortable with, even though it was not much (I was on alot of O2). I would walk on the treadmill, lift light weights, and just that little bit helped me gain some strength. The docs want you to be as strong as you can going into surgery. I also went to rehab post transplant... Just so you know the transplant was the best thing that has ever happended to me... I hope everything goes well for you and your son.

Take Care!

 

[Buxxfan]

Hello Naomi,
Like your son, when I heard that I should be evaluated I was not ready but the more sick I became the more accepting I was to be listed. I was on the same regime your son is on (Vest, Pulmozyme, saline, Xoponex, and IV's)... When I did get on the list, my doc (Tampa General) said I needed to gain weight, keep up with all my treatments, and go to Pulmonary rehab. Gaining weight was the most difficult for me because #1 I have never been able to gain weight and #2 I had no appetite at all. I did drink as many of those Ensure drinks I could and that did help a little... The Vest was my CPT and I did go to rehab. Rehab was tough but I think it made a big difference. I did not force myself and did what I was comfortable with, even though it was not much (I was on alot of O2). I would walk on the treadmill, lift light weights, and just that little bit helped me gain some strength. The docs want you to be as strong as you can going into surgery. I also went to rehab post transplant... Just so you know the transplant was the best thing that has ever happended to me... I hope everything goes well for you and your son.

Take Care!

 

[Buxxfan]

Hello Naomi,
<br />Like your son, when I heard that I should be evaluated I was not ready but the more sick I became the more accepting I was to be listed. I was on the same regime your son is on (Vest, Pulmozyme, saline, Xoponex, and IV's)... When I did get on the list, my doc (Tampa General) said I needed to gain weight, keep up with all my treatments, and go to Pulmonary rehab. Gaining weight was the most difficult for me because #1 I have never been able to gain weight and #2 I had no appetite at all. I did drink as many of those Ensure drinks I could and that did help a little... The Vest was my CPT and I did go to rehab. Rehab was tough but I think it made a big difference. I did not force myself and did what I was comfortable with, even though it was not much (I was on alot of O2). I would walk on the treadmill, lift light weights, and just that little bit helped me gain some strength. The docs want you to be as strong as you can going into surgery. I also went to rehab post transplant... Just so you know the transplant was the best thing that has ever happended to me... I hope everything goes well for you and your son.
<br />
<br />Take Care!