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 indecition
- 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!!!
coltsfan715
New member
With PFTs in the 80s I wouldn't think Transplant would even be something to think about. I know frequent hospital says may be a draw back - but I had cultured MRSA for close to a decade when I was evaluated for transplant - but my lung function was also around 25-30%.
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
coltsfan715
New member
With PFTs in the 80s I wouldn't think Transplant would even be something to think about. I know frequent hospital says may be a draw back - but I had cultured MRSA for close to a decade when I was evaluated for transplant - but my lung function was also around 25-30%.
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
coltsfan715
New member
With PFTs in the 80s I wouldn't think Transplant would even be something to think about. I know frequent hospital says may be a draw back - but I had cultured MRSA for close to a decade when I was evaluated for transplant - but my lung function was also around 25-30%.
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
coltsfan715
New member
With PFTs in the 80s I wouldn't think Transplant would even be something to think about. I know frequent hospital says may be a draw back - but I had cultured MRSA for close to a decade when I was evaluated for transplant - but my lung function was also around 25-30%.
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
Lindsey
coltsfan715
New member
With PFTs in the 80s I wouldn't think Transplant would even be something to think about. I know frequent hospital says may be a draw back - but I had cultured MRSA for close to a decade when I was evaluated for transplant - but my lung function was also around 25-30%.
<br />
<br />I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
<br />
<br />Lindsey
<br />
<br />I would say if you are uncomfortable making the decision based on what they have told you see if you can get to another transplant center for a second opinion. I know it is alot to go through BUT to be sure you are making a good decision I would give it a shot.
<br />
<br />Lindsey