Wait times are ONLY an estimate. Brigham and Women's told us less than a year. After a year and a half on that list, Mike was dual listed at the Cleveland Clinic whose "average wait time" was 3 months. Over a year later, Mike was transplanted at Brigham and Women's. They CANNOT guarantee you any sort of wait time. They can't predict the size and blood type of the lungs they will get, so please don't base your choice on that alone. It gets pretty discouraging waiting for over 2 years when you are told something different.
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3 month wait list for TX !!!
- Thread starter TwistedTanya
- Start date
Wait times are ONLY an estimate. Brigham and Women's told us less than a year. After a year and a half on that list, Mike was dual listed at the Cleveland Clinic whose "average wait time" was 3 months. Over a year later, Mike was transplanted at Brigham and Women's. They CANNOT guarantee you any sort of wait time. They can't predict the size and blood type of the lungs they will get, so please don't base your choice on that alone. It gets pretty discouraging waiting for over 2 years when you are told something different.
Wait times are ONLY an estimate. Brigham and Women's told us less than a year. After a year and a half on that list, Mike was dual listed at the Cleveland Clinic whose "average wait time" was 3 months. Over a year later, Mike was transplanted at Brigham and Women's. They CANNOT guarantee you any sort of wait time. They can't predict the size and blood type of the lungs they will get, so please don't base your choice on that alone. It gets pretty discouraging waiting for over 2 years when you are told something different.
Wait times are ONLY an estimate. Brigham and Women's told us less than a year. After a year and a half on that list, Mike was dual listed at the Cleveland Clinic whose "average wait time" was 3 months. Over a year later, Mike was transplanted at Brigham and Women's. They CANNOT guarantee you any sort of wait time. They can't predict the size and blood type of the lungs they will get, so please don't base your choice on that alone. It gets pretty discouraging waiting for over 2 years when you are told something different.
Wait times are ONLY an estimate. Brigham and Women's told us less than a year. After a year and a half on that list, Mike was dual listed at the Cleveland Clinic whose "average wait time" was 3 months. Over a year later, Mike was transplanted at Brigham and Women's. They CANNOT guarantee you any sort of wait time. They can't predict the size and blood type of the lungs they will get, so please don't base your choice on that alone. It gets pretty discouraging waiting for over 2 years when you are told something different.
coltsfan715
New member
Hi Tanya,
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
coltsfan715
New member
Hi Tanya,
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
coltsfan715
New member
Hi Tanya,
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
coltsfan715
New member
Hi Tanya,
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
I just wanted to add a few things I took from your posts and the replies of others.
I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
Love and Good Luck
Lindsey
coltsfan715
New member
Hi Tanya,
<br />
<br />I just wanted to add a few things I took from your posts and the replies of others.
<br />
<br />I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
<br />
<br />I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
<br />
<br />For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
<br />
<br />As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
<br />
<br />That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
<br />
<br />I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
<br />
<br />Love and Good Luck
<br />Lindsey
<br />
<br />I just wanted to add a few things I took from your posts and the replies of others.
<br />
<br />I am glad that YOU are happy with your center. For many of the same reasons that a prior poster refuses to go to Tampa Gen. I refused to go to Shands at UF. I went there looking for an avenue of treatment and was treated with the least amount of respect and concern I have ever been treated with at a physicians office. I was not even looked at when the doc came into my room. An intern examed me and the doc sat looking at my chart (did NOT even look up from my chart to look me in the face) and said I can't do anything for you you are better staying in Jacksonville. Meanwhile at the time I was just looking for a CF center and there wasn't one in Jacksonville at the time (now there is). Due to my interactions with the CF team in Gainesville I refused to go there for transplant because honestly I did not want to deal with the CF team EVER.
<br />
<br />I chose to stay in my home town (Jacksonville) and go to Mayo Clinic for transplant. Mayo is also relatively new to the transplant field. The clinic here locally has been doing transplants since 2001. The stats here are a bit lower than the national average as well, but they do much more high risk transplants and much older patients than many centers will take. The team of transplant docs have worked together for 10+ years in St.Louis before coming to Jacksonville - so they have been working together and in transplant for 20-25 years. The surgeon that did my surgery was also one of the first to perform heart valve replacements using cow valves and was/is a major pioneer in his field. Though he no longer works for Mayo - he is now working in the NY area helping to start a lung transplant program.
<br />
<br />For me I took all of that into account when making my decision with choosing Mayo over another center. I think that your reasoning and methods behind choosing your center are great and honestly think that comfort level and confidence in your docs pre transplant is major when it comes to this kind of thing. If you don't have the confidence in them how can you trust they will make the right decisions when your life is in the balance.
<br />
<br />As for lung function being ideal for transplant. I was told that high 20s lung function was an ideal time to get listed and lung function ranging from 15-25 was the perfect time to be transplanted. At that stage you are in a range where one major thing may very well kill you andare in most instances truly sick enough to be in desparate need of transplant but you are not too sick to survive it and recover well in most instances. For me I was transplanted around 22%.
<br />
<br />That being said I know and have heard of many that were transplanted at lower FEV1 and did fantastic and some that were trasplanted at higher FEV1 and didn't do as well. So each case is individual and unique.
<br />
<br />I wish you all the best and hope that your faith and confidence in your team proves to be well based - despite what others may say or what other's experiences may have been. I only say that because I had many people tell me that I should go somewhere else or question what my docs have done in my treatment. I just continue to remind myself (when I have doubts) that I have listened to my docs and done as they recommend and I am sitting just over a year out having had no lung issues to date. So I let people question my center because I don't care I am confident I am in the right place for me.
<br />
<br />Love and Good Luck
<br />Lindsey
TwistedTanya
New member
Hi Lindsey,
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
TwistedTanya
New member
Hi Lindsey,
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
TwistedTanya
New member
Hi Lindsey,
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
TwistedTanya
New member
Hi Lindsey,
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
TwistedTanya
New member
Hi Lindsey,
<br /> Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
<br /> Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
<br />
<br /> Thanks for the reply. You worded it perfectly! I have been to clinics in Orlando, Palm Beach, and evaluated once for TX at Barnes in St. Louis and of all those places, TGH is where I feel I will get the best and most personalized care. I have heard so many wonderful things about my doctor and his team from many people and he has proved that my health truely matters to him. I've heard that he is always the one to pull out the vent b/c for him, it's the best thing to see someone take their first breath with their new lungs. The guy even works every day and usually only takes off one week out of the whole year...so he is very dedicated. The CF clinic is in part of the hospital so he can be paged or whoever is on call depending on the time of day so I believe that's why personal numbers aren't needed to be given out b/c someone can always be reached by calling the CF or lungTX emergency line.
<br /> Anyway, that sucks to hear about Shands b/c I have been hearing bad stuff about them lately. I think they used to be better and maybe something changed. I'm glad things worked out for you at Mayo and that you are doing so great!
<br />
I am a long time pt from Tampa General with cystic fibrosis and had a lung transplant patient last year. Dr Rolfe and his staff are unbelievably dedicated to their patients. I never saw him "intent on taking out your lungs" until my lung function got really bad. What I love about him is he doesn't pull punches...you know exactly where you stand with him and he tells you everything about your illness. He is very honest, one of the smartest doctors I have ever known (and I have known several), and really cares about his patients. Someone tried to tell me to go to Gainesville but they didn't really seem to care very much about the patients so I was glad I stayed in Tampa. I have had other CF friends who felt the same way about Gainesville. I am shocked by the information from Jessica. First, TGH was the number 1 transplant center in the state in 2007, as they did more transplants than Gainesville. Also, Dr Rolfe has always called me back whenever I had concerns. They also have their own clinic now and there are lots of exam rooms. Part of the problem may be that there were 2 bad employees in their clinic and I heard they were fired. One was the CF coordinator and one was a secretary. They really were difficult to deal with and I never felt like the coordinator Amber took good care of me and the secretary never passed on any messages. I would always call and talk to one of the other coordinators (Kerry, Kim, and Ginger) and they always helped me out. Since those 2 employees were kicked out, they hired a new CF coordinator named Rachel who is really nice and does a great job. Also, the new secretary named Allison is great. The other coordinators took great care of me both before and after my transplant. I know everyone has to find a transplant center that works for them, so Gainesville sounds better for Jessica.
I am a long time pt from Tampa General with cystic fibrosis and had a lung transplant patient last year. Dr Rolfe and his staff are unbelievably dedicated to their patients. I never saw him "intent on taking out your lungs" until my lung function got really bad. What I love about him is he doesn't pull punches...you know exactly where you stand with him and he tells you everything about your illness. He is very honest, one of the smartest doctors I have ever known (and I have known several), and really cares about his patients. Someone tried to tell me to go to Gainesville but they didn't really seem to care very much about the patients so I was glad I stayed in Tampa. I have had other CF friends who felt the same way about Gainesville. I am shocked by the information from Jessica. First, TGH was the number 1 transplant center in the state in 2007, as they did more transplants than Gainesville. Also, Dr Rolfe has always called me back whenever I had concerns. They also have their own clinic now and there are lots of exam rooms. Part of the problem may be that there were 2 bad employees in their clinic and I heard they were fired. One was the CF coordinator and one was a secretary. They really were difficult to deal with and I never felt like the coordinator Amber took good care of me and the secretary never passed on any messages. I would always call and talk to one of the other coordinators (Kerry, Kim, and Ginger) and they always helped me out. Since those 2 employees were kicked out, they hired a new CF coordinator named Rachel who is really nice and does a great job. Also, the new secretary named Allison is great. The other coordinators took great care of me both before and after my transplant. I know everyone has to find a transplant center that works for them, so Gainesville sounds better for Jessica.
I am a long time pt from Tampa General with cystic fibrosis and had a lung transplant patient last year. Dr Rolfe and his staff are unbelievably dedicated to their patients. I never saw him "intent on taking out your lungs" until my lung function got really bad. What I love about him is he doesn't pull punches...you know exactly where you stand with him and he tells you everything about your illness. He is very honest, one of the smartest doctors I have ever known (and I have known several), and really cares about his patients. Someone tried to tell me to go to Gainesville but they didn't really seem to care very much about the patients so I was glad I stayed in Tampa. I have had other CF friends who felt the same way about Gainesville. I am shocked by the information from Jessica. First, TGH was the number 1 transplant center in the state in 2007, as they did more transplants than Gainesville. Also, Dr Rolfe has always called me back whenever I had concerns. They also have their own clinic now and there are lots of exam rooms. Part of the problem may be that there were 2 bad employees in their clinic and I heard they were fired. One was the CF coordinator and one was a secretary. They really were difficult to deal with and I never felt like the coordinator Amber took good care of me and the secretary never passed on any messages. I would always call and talk to one of the other coordinators (Kerry, Kim, and Ginger) and they always helped me out. Since those 2 employees were kicked out, they hired a new CF coordinator named Rachel who is really nice and does a great job. Also, the new secretary named Allison is great. The other coordinators took great care of me both before and after my transplant. I know everyone has to find a transplant center that works for them, so Gainesville sounds better for Jessica.
I am a long time pt from Tampa General with cystic fibrosis and had a lung transplant patient last year. Dr Rolfe and his staff are unbelievably dedicated to their patients. I never saw him "intent on taking out your lungs" until my lung function got really bad. What I love about him is he doesn't pull punches...you know exactly where you stand with him and he tells you everything about your illness. He is very honest, one of the smartest doctors I have ever known (and I have known several), and really cares about his patients. Someone tried to tell me to go to Gainesville but they didn't really seem to care very much about the patients so I was glad I stayed in Tampa. I have had other CF friends who felt the same way about Gainesville. I am shocked by the information from Jessica. First, TGH was the number 1 transplant center in the state in 2007, as they did more transplants than Gainesville. Also, Dr Rolfe has always called me back whenever I had concerns. They also have their own clinic now and there are lots of exam rooms. Part of the problem may be that there were 2 bad employees in their clinic and I heard they were fired. One was the CF coordinator and one was a secretary. They really were difficult to deal with and I never felt like the coordinator Amber took good care of me and the secretary never passed on any messages. I would always call and talk to one of the other coordinators (Kerry, Kim, and Ginger) and they always helped me out. Since those 2 employees were kicked out, they hired a new CF coordinator named Rachel who is really nice and does a great job. Also, the new secretary named Allison is great. The other coordinators took great care of me both before and after my transplant. I know everyone has to find a transplant center that works for them, so Gainesville sounds better for Jessica.
I am a long time pt from Tampa General with cystic fibrosis and had a lung transplant patient last year. Dr Rolfe and his staff are unbelievably dedicated to their patients. I never saw him "intent on taking out your lungs" until my lung function got really bad. What I love about him is he doesn't pull punches...you know exactly where you stand with him and he tells you everything about your illness. He is very honest, one of the smartest doctors I have ever known (and I have known several), and really cares about his patients. Someone tried to tell me to go to Gainesville but they didn't really seem to care very much about the patients so I was glad I stayed in Tampa. I have had other CF friends who felt the same way about Gainesville. I am shocked by the information from Jessica. First, TGH was the number 1 transplant center in the state in 2007, as they did more transplants than Gainesville. Also, Dr Rolfe has always called me back whenever I had concerns. They also have their own clinic now and there are lots of exam rooms. Part of the problem may be that there were 2 bad employees in their clinic and I heard they were fired. One was the CF coordinator and one was a secretary. They really were difficult to deal with and I never felt like the coordinator Amber took good care of me and the secretary never passed on any messages. I would always call and talk to one of the other coordinators (Kerry, Kim, and Ginger) and they always helped me out. Since those 2 employees were kicked out, they hired a new CF coordinator named Rachel who is really nice and does a great job. Also, the new secretary named Allison is great. The other coordinators took great care of me both before and after my transplant. I know everyone has to find a transplant center that works for them, so Gainesville sounds better for Jessica.