So here is my delema. Prior to our transplant evaluation in Houston (we live in Dallas) I was told that AJ will not qualify for a transplant because his pfts are too high (in the 40's) and he is not normally on oxygen. The purpose of the evaluation was because they were deciding weather or not to do a lobectomy (removal of his lower left lobe) or a numanectomy (full left lung removal). After hearing what the Dr.s said in Houston about both of those I have decided NOT to do them. But, to my suprise they said he qualifies for a lung transplant and to take the holidays to think about it. They said the reason he qualifies is due to the frequency of his hospital stays. The problem AJ has been having is that the lower left lobe and part of the upper left lobe are so compacted with mucas that he is only getting 15% lung function from that lung. His right lung however is at 85%. Unfortunatley he carries MRSA and his compacted left lung is a perfect breeding ground for the MRSA. So when it flares up it moves right and we are in the hospital on antibiotics. The antibiotics kill the MRSA in the healthy areas of his lungs, he gets off the antibiotics and the whole cycle starts all over again. I don't know what to say because I just don't think he is ready for a transplant but the Dr.'s (who were telling me a month ago he wouldn't qualify) all think that if he qualifies I should get on the ball and do it. I also know that at 5 years there is a 50% failure rate for a transplant. That is eleven years old and I want to give him as many years as possible. Am I just thinking he's not that bad because I am with him every day and used to it or should I take advantage of his approval for a transplant? Has anyone else experienced a delema like this? Sorry so long!!!
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Transplant indecision
- Thread starter shea14
- Start date
So here is my delema. Prior to our transplant evaluation in Houston (we live in Dallas) I was told that AJ will not qualify for a transplant because his pfts are too high (in the 40's) and he is not normally on oxygen. The purpose of the evaluation was because they were deciding weather or not to do a lobectomy (removal of his lower left lobe) or a numanectomy (full left lung removal). After hearing what the Dr.s said in Houston about both of those I have decided NOT to do them. But, to my suprise they said he qualifies for a lung transplant and to take the holidays to think about it. They said the reason he qualifies is due to the frequency of his hospital stays. The problem AJ has been having is that the lower left lobe and part of the upper left lobe are so compacted with mucas that he is only getting 15% lung function from that lung. His right lung however is at 85%. Unfortunatley he carries MRSA and his compacted left lung is a perfect breeding ground for the MRSA. So when it flares up it moves right and we are in the hospital on antibiotics. The antibiotics kill the MRSA in the healthy areas of his lungs, he gets off the antibiotics and the whole cycle starts all over again. I don't know what to say because I just don't think he is ready for a transplant but the Dr.'s (who were telling me a month ago he wouldn't qualify) all think that if he qualifies I should get on the ball and do it. I also know that at 5 years there is a 50% failure rate for a transplant. That is eleven years old and I want to give him as many years as possible. Am I just thinking he's not that bad because I am with him every day and used to it or should I take advantage of his approval for a transplant? Has anyone else experienced a delema like this? Sorry so long!!!
So here is my delema. Prior to our transplant evaluation in Houston (we live in Dallas) I was told that AJ will not qualify for a transplant because his pfts are too high (in the 40's) and he is not normally on oxygen. The purpose of the evaluation was because they were deciding weather or not to do a lobectomy (removal of his lower left lobe) or a numanectomy (full left lung removal). After hearing what the Dr.s said in Houston about both of those I have decided NOT to do them. But, to my suprise they said he qualifies for a lung transplant and to take the holidays to think about it. They said the reason he qualifies is due to the frequency of his hospital stays. The problem AJ has been having is that the lower left lobe and part of the upper left lobe are so compacted with mucas that he is only getting 15% lung function from that lung. His right lung however is at 85%. Unfortunatley he carries MRSA and his compacted left lung is a perfect breeding ground for the MRSA. So when it flares up it moves right and we are in the hospital on antibiotics. The antibiotics kill the MRSA in the healthy areas of his lungs, he gets off the antibiotics and the whole cycle starts all over again. I don't know what to say because I just don't think he is ready for a transplant but the Dr.'s (who were telling me a month ago he wouldn't qualify) all think that if he qualifies I should get on the ball and do it. I also know that at 5 years there is a 50% failure rate for a transplant. That is eleven years old and I want to give him as many years as possible. Am I just thinking he's not that bad because I am with him every day and used to it or should I take advantage of his approval for a transplant? Has anyone else experienced a delema like this? Sorry so long!!!
So here is my delema. Prior to our transplant evaluation in Houston (we live in Dallas) I was told that AJ will not qualify for a transplant because his pfts are too high (in the 40's) and he is not normally on oxygen. The purpose of the evaluation was because they were deciding weather or not to do a lobectomy (removal of his lower left lobe) or a numanectomy (full left lung removal). After hearing what the Dr.s said in Houston about both of those I have decided NOT to do them. But, to my suprise they said he qualifies for a lung transplant and to take the holidays to think about it. They said the reason he qualifies is due to the frequency of his hospital stays. The problem AJ has been having is that the lower left lobe and part of the upper left lobe are so compacted with mucas that he is only getting 15% lung function from that lung. His right lung however is at 85%. Unfortunatley he carries MRSA and his compacted left lung is a perfect breeding ground for the MRSA. So when it flares up it moves right and we are in the hospital on antibiotics. The antibiotics kill the MRSA in the healthy areas of his lungs, he gets off the antibiotics and the whole cycle starts all over again. I don't know what to say because I just don't think he is ready for a transplant but the Dr.'s (who were telling me a month ago he wouldn't qualify) all think that if he qualifies I should get on the ball and do it. I also know that at 5 years there is a 50% failure rate for a transplant. That is eleven years old and I want to give him as many years as possible. Am I just thinking he's not that bad because I am with him every day and used to it or should I take advantage of his approval for a transplant? Has anyone else experienced a delema like this? Sorry so long!!!
So here is my delema. Prior to our transplant evaluation in Houston (we live in Dallas) I was told that AJ will not qualify for a transplant because his pfts are too high (in the 40's) and he is not normally on oxygen. The purpose of the evaluation was because they were deciding weather or not to do a lobectomy (removal of his lower left lobe) or a numanectomy (full left lung removal). After hearing what the Dr.s said in Houston about both of those I have decided NOT to do them. But, to my suprise they said he qualifies for a lung transplant and to take the holidays to think about it. They said the reason he qualifies is due to the frequency of his hospital stays. The problem AJ has been having is that the lower left lobe and part of the upper left lobe are so compacted with mucas that he is only getting 15% lung function from that lung. His right lung however is at 85%. Unfortunatley he carries MRSA and his compacted left lung is a perfect breeding ground for the MRSA. So when it flares up it moves right and we are in the hospital on antibiotics. The antibiotics kill the MRSA in the healthy areas of his lungs, he gets off the antibiotics and the whole cycle starts all over again. I don't know what to say because I just don't think he is ready for a transplant but the Dr.'s (who were telling me a month ago he wouldn't qualify) all think that if he qualifies I should get on the ball and do it. I also know that at 5 years there is a 50% failure rate for a transplant. That is eleven years old and I want to give him as many years as possible. Am I just thinking he's not that bad because I am with him every day and used to it or should I take advantage of his approval for a transplant? Has anyone else experienced a delema like this? Sorry so long!!!
50% is the average 5 year survival rate at 5 years. Though those stats are obviously for the here and now so.......not sure what they will be in 5 years.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
50% is the average 5 year survival rate at 5 years. Though those stats are obviously for the here and now so.......not sure what they will be in 5 years.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
50% is the average 5 year survival rate at 5 years. Though those stats are obviously for the here and now so.......not sure what they will be in 5 years.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
50% is the average 5 year survival rate at 5 years. Though those stats are obviously for the here and now so.......not sure what they will be in 5 years.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
50% is the average 5 year survival rate at 5 years. Though those stats are obviously for the here and now so.......not sure what they will be in 5 years.
<br />
<br />Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
<br />
<br />I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.
<br />
<br />Wow.....that is a really big decision to make. I do know that one of the big factors in deciding for a transplant is a quality of life issue. When he does get slammed with an infection and in the hospital, is he losing FEV1 usually every time? I also don't know if the criteria is different in the tx world for children. Since you didn't start out on this journey with transplant in mind.....is it possible to go somewhere for a second opinion or is that just too much for all of you at this point. I am also wondering your reasons for not deciding on a lobectomy....which I know very little about. I know there are a few people on this forum who have had that done.
<br />
<br />I am sorry I am no help at all. I do hope you get some good and informative posts about this. You might post this question in the adult section since few people check this section out.