3 month wait list for TX !!!

nu65 · May 21, 2008

I seem to have had a completely different experience. I live in Tampa with FEV about 28% and will be having my transplant at Shands in Gainesville when I decide to get listed. The reason I chose Shands was because of their experience. Tampa General only started their program a few years ago whereas Shands is not new to lung transplantation.

When I switched to adult CF care I went to Dr. Rolfe as he is the only CF center-affiliated doctor. His practice was temporarily located in the hospital hallway where CF patients and other lung transplant-ees share only 2 small waiting rooms. The staff almost never wear masks/gowns. This was a horrible idea and I hated it from the moment I got there. Second, Dr. Rolfe is intent on taking your lungs out, no matter what your lung function is. His assistant nurse people would call me up and tell me they want me evaluated. Dr. Rolfe never makes personal phone calls and always questioned why I was going to Shands for transplantation. Dr. Rolfe and his clinic are bombarded with patients both CF and other and do not actively participate in your health unless you are getting a transplant. I left his practice 4 months later because I had enough and now see a pulmonologist who gave me his cellphone number AND e-mail. Don't bother with TGH. Sorry but I had to share my experience with him and his clinic.

nu65 · May 21, 2008

I seem to have had a completely different experience. I live in Tampa with FEV about 28% and will be having my transplant at Shands in Gainesville when I decide to get listed. The reason I chose Shands was because of their experience. Tampa General only started their program a few years ago whereas Shands is not new to lung transplantation.

When I switched to adult CF care I went to Dr. Rolfe as he is the only CF center-affiliated doctor. His practice was temporarily located in the hospital hallway where CF patients and other lung transplant-ees share only 2 small waiting rooms. The staff almost never wear masks/gowns. This was a horrible idea and I hated it from the moment I got there. Second, Dr. Rolfe is intent on taking your lungs out, no matter what your lung function is. His assistant nurse people would call me up and tell me they want me evaluated. Dr. Rolfe never makes personal phone calls and always questioned why I was going to Shands for transplantation. Dr. Rolfe and his clinic are bombarded with patients both CF and other and do not actively participate in your health unless you are getting a transplant. I left his practice 4 months later because I had enough and now see a pulmonologist who gave me his cellphone number AND e-mail. Don't bother with TGH. Sorry but I had to share my experience with him and his clinic.

nu65 · May 21, 2008

I seem to have had a completely different experience. I live in Tampa with FEV about 28% and will be having my transplant at Shands in Gainesville when I decide to get listed. The reason I chose Shands was because of their experience. Tampa General only started their program a few years ago whereas Shands is not new to lung transplantation.

When I switched to adult CF care I went to Dr. Rolfe as he is the only CF center-affiliated doctor. His practice was temporarily located in the hospital hallway where CF patients and other lung transplant-ees share only 2 small waiting rooms. The staff almost never wear masks/gowns. This was a horrible idea and I hated it from the moment I got there. Second, Dr. Rolfe is intent on taking your lungs out, no matter what your lung function is. His assistant nurse people would call me up and tell me they want me evaluated. Dr. Rolfe never makes personal phone calls and always questioned why I was going to Shands for transplantation. Dr. Rolfe and his clinic are bombarded with patients both CF and other and do not actively participate in your health unless you are getting a transplant. I left his practice 4 months later because I had enough and now see a pulmonologist who gave me his cellphone number AND e-mail. Don't bother with TGH. Sorry but I had to share my experience with him and his clinic.

nu65 · May 21, 2008

I seem to have had a completely different experience. I live in Tampa with FEV about 28% and will be having my transplant at Shands in Gainesville when I decide to get listed. The reason I chose Shands was because of their experience. Tampa General only started their program a few years ago whereas Shands is not new to lung transplantation.

When I switched to adult CF care I went to Dr. Rolfe as he is the only CF center-affiliated doctor. His practice was temporarily located in the hospital hallway where CF patients and other lung transplant-ees share only 2 small waiting rooms. The staff almost never wear masks/gowns. This was a horrible idea and I hated it from the moment I got there. Second, Dr. Rolfe is intent on taking your lungs out, no matter what your lung function is. His assistant nurse people would call me up and tell me they want me evaluated. Dr. Rolfe never makes personal phone calls and always questioned why I was going to Shands for transplantation. Dr. Rolfe and his clinic are bombarded with patients both CF and other and do not actively participate in your health unless you are getting a transplant. I left his practice 4 months later because I had enough and now see a pulmonologist who gave me his cellphone number AND e-mail. Don't bother with TGH. Sorry but I had to share my experience with him and his clinic.

nu65 · May 21, 2008

I seem to have had a completely different experience. I live in Tampa with FEV about 28% and will be having my transplant at Shands in Gainesville when I decide to get listed. The reason I chose Shands was because of their experience. Tampa General only started their program a few years ago whereas Shands is not new to lung transplantation.
 
 When I switched to adult CF care I went to Dr. Rolfe as he is the only CF center-affiliated doctor. His practice was temporarily located in the hospital hallway where CF patients and other lung transplant-ees share only 2 small waiting rooms. The staff almost never wear masks/gowns. This was a horrible idea and I hated it from the moment I got there. Second, Dr. Rolfe is intent on taking your lungs out, no matter what your lung function is. His assistant nurse people would call me up and tell me they want me evaluated. Dr. Rolfe never makes personal phone calls and always questioned why I was going to Shands for transplantation. Dr. Rolfe and his clinic are bombarded with patients both CF and other and do not actively participate in your health unless you are getting a transplant. I left his practice 4 months later because I had enough and now see a pulmonologist who gave me his cellphone number AND e-mail. Don't bother with TGH. Sorry but I had to share my experience with him and his clinic.

TwistedTanya · May 21, 2008

Wow, Jessica, sorry to hear your experience wasn't as well. Yes, the clinic was temporarily set up in the hallway but they now have their own clinic with a large waiting room and a seperate area for special cases. I have seen them use gloves and gowns a lot in my experience since I have been going there for a little over a year. There was an assistant named Jessica that worked there that I had problems with b/c my messages weren't all getting through but she is no longer working there. They also have a new coordinator now to help out. As far as personal calls, I don't have any of his personal numbers but he has returned calls when I was sick and they paged him and even called my mom back when she said she wanted to talk to him directly.
He has seemed to really push for me getting a transplant but I average 27-29% so that is considered the time to get one. Some other centers are a lot harder to get listed with. I think why Dr. Rolfe is so pushy for transplant is b/c he doesn't want to see people suffer and get too sick to get a transplant or have a tough long recovery.
When I was in the hospital, he came to see me every day I was there which no other doctor has ever done. He didn't know what my PFT's were yet b/c I hadn't gone to a clinic visit yet. He mentioned TX after finding out my numbers but said that he wasn't done with me yet and wanted to keeep trying to get me better first. He just wanted me to be aware. I feel like he really stays on top of my health. He might have another coordinator or staff member call me to inform me of something but that's usually what you get with any doctor.
I know the lung TX is fairly new there but that doesn't mean the surgeons are inexperienced. They have worked in other hospitals, Cleveland Clinic, which is a top hospital and they have done several other organ transplants at TGH. They have also increased the number of TX the last 2 or 3 years. I believe they have already done 30 lung TX this year! They are becoming a top center. I know a lot of people used to be sent to Shands and do pretty well but, I have heard of at least 2 really bad stories from people who went there. I would be a little worried about only seeing a pulmonologist b/c they don't know as much about CF as a CF doctor. I'm still so shocked you had a bad experience with TGH and Dr. Rolfe. You are the first one I have heard from that has. Well, I hope things work out for you regardless. Best of Luck!

TwistedTanya · May 21, 2008

Wow, Jessica, sorry to hear your experience wasn't as well. Yes, the clinic was temporarily set up in the hallway but they now have their own clinic with a large waiting room and a seperate area for special cases. I have seen them use gloves and gowns a lot in my experience since I have been going there for a little over a year. There was an assistant named Jessica that worked there that I had problems with b/c my messages weren't all getting through but she is no longer working there. They also have a new coordinator now to help out. As far as personal calls, I don't have any of his personal numbers but he has returned calls when I was sick and they paged him and even called my mom back when she said she wanted to talk to him directly.
He has seemed to really push for me getting a transplant but I average 27-29% so that is considered the time to get one. Some other centers are a lot harder to get listed with. I think why Dr. Rolfe is so pushy for transplant is b/c he doesn't want to see people suffer and get too sick to get a transplant or have a tough long recovery.
When I was in the hospital, he came to see me every day I was there which no other doctor has ever done. He didn't know what my PFT's were yet b/c I hadn't gone to a clinic visit yet. He mentioned TX after finding out my numbers but said that he wasn't done with me yet and wanted to keeep trying to get me better first. He just wanted me to be aware. I feel like he really stays on top of my health. He might have another coordinator or staff member call me to inform me of something but that's usually what you get with any doctor.
I know the lung TX is fairly new there but that doesn't mean the surgeons are inexperienced. They have worked in other hospitals, Cleveland Clinic, which is a top hospital and they have done several other organ transplants at TGH. They have also increased the number of TX the last 2 or 3 years. I believe they have already done 30 lung TX this year! They are becoming a top center. I know a lot of people used to be sent to Shands and do pretty well but, I have heard of at least 2 really bad stories from people who went there. I would be a little worried about only seeing a pulmonologist b/c they don't know as much about CF as a CF doctor. I'm still so shocked you had a bad experience with TGH and Dr. Rolfe. You are the first one I have heard from that has. Well, I hope things work out for you regardless. Best of Luck!

TwistedTanya · May 21, 2008

Wow, Jessica, sorry to hear your experience wasn't as well. Yes, the clinic was temporarily set up in the hallway but they now have their own clinic with a large waiting room and a seperate area for special cases. I have seen them use gloves and gowns a lot in my experience since I have been going there for a little over a year. There was an assistant named Jessica that worked there that I had problems with b/c my messages weren't all getting through but she is no longer working there. They also have a new coordinator now to help out. As far as personal calls, I don't have any of his personal numbers but he has returned calls when I was sick and they paged him and even called my mom back when she said she wanted to talk to him directly.
He has seemed to really push for me getting a transplant but I average 27-29% so that is considered the time to get one. Some other centers are a lot harder to get listed with. I think why Dr. Rolfe is so pushy for transplant is b/c he doesn't want to see people suffer and get too sick to get a transplant or have a tough long recovery.
When I was in the hospital, he came to see me every day I was there which no other doctor has ever done. He didn't know what my PFT's were yet b/c I hadn't gone to a clinic visit yet. He mentioned TX after finding out my numbers but said that he wasn't done with me yet and wanted to keeep trying to get me better first. He just wanted me to be aware. I feel like he really stays on top of my health. He might have another coordinator or staff member call me to inform me of something but that's usually what you get with any doctor.
I know the lung TX is fairly new there but that doesn't mean the surgeons are inexperienced. They have worked in other hospitals, Cleveland Clinic, which is a top hospital and they have done several other organ transplants at TGH. They have also increased the number of TX the last 2 or 3 years. I believe they have already done 30 lung TX this year! They are becoming a top center. I know a lot of people used to be sent to Shands and do pretty well but, I have heard of at least 2 really bad stories from people who went there. I would be a little worried about only seeing a pulmonologist b/c they don't know as much about CF as a CF doctor. I'm still so shocked you had a bad experience with TGH and Dr. Rolfe. You are the first one I have heard from that has. Well, I hope things work out for you regardless. Best of Luck!

TwistedTanya · May 21, 2008

Wow, Jessica, sorry to hear your experience wasn't as well. Yes, the clinic was temporarily set up in the hallway but they now have their own clinic with a large waiting room and a seperate area for special cases. I have seen them use gloves and gowns a lot in my experience since I have been going there for a little over a year. There was an assistant named Jessica that worked there that I had problems with b/c my messages weren't all getting through but she is no longer working there. They also have a new coordinator now to help out. As far as personal calls, I don't have any of his personal numbers but he has returned calls when I was sick and they paged him and even called my mom back when she said she wanted to talk to him directly.
He has seemed to really push for me getting a transplant but I average 27-29% so that is considered the time to get one. Some other centers are a lot harder to get listed with. I think why Dr. Rolfe is so pushy for transplant is b/c he doesn't want to see people suffer and get too sick to get a transplant or have a tough long recovery.
When I was in the hospital, he came to see me every day I was there which no other doctor has ever done. He didn't know what my PFT's were yet b/c I hadn't gone to a clinic visit yet. He mentioned TX after finding out my numbers but said that he wasn't done with me yet and wanted to keeep trying to get me better first. He just wanted me to be aware. I feel like he really stays on top of my health. He might have another coordinator or staff member call me to inform me of something but that's usually what you get with any doctor.
I know the lung TX is fairly new there but that doesn't mean the surgeons are inexperienced. They have worked in other hospitals, Cleveland Clinic, which is a top hospital and they have done several other organ transplants at TGH. They have also increased the number of TX the last 2 or 3 years. I believe they have already done 30 lung TX this year! They are becoming a top center. I know a lot of people used to be sent to Shands and do pretty well but, I have heard of at least 2 really bad stories from people who went there. I would be a little worried about only seeing a pulmonologist b/c they don't know as much about CF as a CF doctor. I'm still so shocked you had a bad experience with TGH and Dr. Rolfe. You are the first one I have heard from that has. Well, I hope things work out for you regardless. Best of Luck!

TwistedTanya · May 21, 2008

Wow, Jessica, sorry to hear your experience wasn't as well. Yes, the clinic was temporarily set up in the hallway but they now have their own clinic with a large waiting room and a seperate area for special cases. I have seen them use gloves and gowns a lot in my experience since I have been going there for a little over a year. There was an assistant named Jessica that worked there that I had problems with b/c my messages weren't all getting through but she is no longer working there. They also have a new coordinator now to help out. As far as personal calls, I don't have any of his personal numbers but he has returned calls when I was sick and they paged him and even called my mom back when she said she wanted to talk to him directly.
 He has seemed to really push for me getting a transplant but I average 27-29% so that is considered the time to get one. Some other centers are a lot harder to get listed with. I think why Dr. Rolfe is so pushy for transplant is b/c he doesn't want to see people suffer and get too sick to get a transplant or have a tough long recovery.
 When I was in the hospital, he came to see me every day I was there which no other doctor has ever done. He didn't know what my PFT's were yet b/c I hadn't gone to a clinic visit yet. He mentioned TX after finding out my numbers but said that he wasn't done with me yet and wanted to keeep trying to get me better first. He just wanted me to be aware. I feel like he really stays on top of my health. He might have another coordinator or staff member call me to inform me of something but that's usually what you get with any doctor.
 I know the lung TX is fairly new there but that doesn't mean the surgeons are inexperienced. They have worked in other hospitals, Cleveland Clinic, which is a top hospital and they have done several other organ transplants at TGH. They have also increased the number of TX the last 2 or 3 years. I believe they have already done 30 lung TX this year! They are becoming a top center. I know a lot of people used to be sent to Shands and do pretty well but, I have heard of at least 2 really bad stories from people who went there. I would be a little worried about only seeing a pulmonologist b/c they don't know as much about CF as a CF doctor. I'm still so shocked you had a bad experience with TGH and Dr. Rolfe. You are the first one I have heard from that has. Well, I hope things work out for you regardless. Best of Luck!

Skye · May 21, 2008

twisted tanya....you may know this already; but, someone reading this post may not understand this. Looking at an FEV1 of 27-29 and having that be an absolute criteria for listing is not really how they do it. There are many people who can hang out in that range for a long time. Things they do look at are FEV1, weight loss, pan resistant, frequency of hospitalizations, and quality of life. As my surgeon put it to me, we don't transplant someone because we are afraid that they will become very ill. You have to look at the whole picture. Hope that makes sense.

Skye · May 21, 2008

twisted tanya....you may know this already; but, someone reading this post may not understand this. Looking at an FEV1 of 27-29 and having that be an absolute criteria for listing is not really how they do it. There are many people who can hang out in that range for a long time. Things they do look at are FEV1, weight loss, pan resistant, frequency of hospitalizations, and quality of life. As my surgeon put it to me, we don't transplant someone because we are afraid that they will become very ill. You have to look at the whole picture. Hope that makes sense.

Skye · May 21, 2008

twisted tanya....you may know this already; but, someone reading this post may not understand this. Looking at an FEV1 of 27-29 and having that be an absolute criteria for listing is not really how they do it. There are many people who can hang out in that range for a long time. Things they do look at are FEV1, weight loss, pan resistant, frequency of hospitalizations, and quality of life. As my surgeon put it to me, we don't transplant someone because we are afraid that they will become very ill. You have to look at the whole picture. Hope that makes sense.

Skye · May 21, 2008

twisted tanya....you may know this already; but, someone reading this post may not understand this. Looking at an FEV1 of 27-29 and having that be an absolute criteria for listing is not really how they do it. There are many people who can hang out in that range for a long time. Things they do look at are FEV1, weight loss, pan resistant, frequency of hospitalizations, and quality of life. As my surgeon put it to me, we don't transplant someone because we are afraid that they will become very ill. You have to look at the whole picture. Hope that makes sense.

Skye · May 21, 2008

twisted tanya....you may know this already; but, someone reading this post may not understand this. Looking at an FEV1 of 27-29 and having that be an absolute criteria for listing is not really how they do it. There are many people who can hang out in that range for a long time. Things they do look at are FEV1, weight loss, pan resistant, frequency of hospitalizations, and quality of life. As my surgeon put it to me, we don't transplant someone because we are afraid that they will become very ill. You have to look at the whole picture. Hope that makes sense.

TwistedTanya · May 22, 2008

Yea, I know there are other things to consider. I have hung around the 30's for a long time but now I have been in the high 20's for about a year. However, I became resistant to a lot of antibiotics and my doctor thinks that if/when I become sensitive to more antibiotics that would be the window of opportunity for a TX. On the otherhand, I have a friend that got his lung TX about 10 years ago and he has always told me to not wait and get TX as soon as I was able. He has known people that waited too long and got sick and died before they were able to get a transplant. So the question is whether you want to take a risk with TX or risk waiting too long and become too sick to even get one. Regardless, if your FEV1 is in the 20's, your quality of life can't be that great. I'm sure many doctors and post TX patients would agree that it would be the better choice to get TX then. If you're FEV1 is in the 20's, you don't have that much further to drop to loose all lung function as if you were doing much better FEV wise. I understand everyone is entitled to their own opinion and that's mine.

TwistedTanya · May 22, 2008

Yea, I know there are other things to consider. I have hung around the 30's for a long time but now I have been in the high 20's for about a year. However, I became resistant to a lot of antibiotics and my doctor thinks that if/when I become sensitive to more antibiotics that would be the window of opportunity for a TX. On the otherhand, I have a friend that got his lung TX about 10 years ago and he has always told me to not wait and get TX as soon as I was able. He has known people that waited too long and got sick and died before they were able to get a transplant. So the question is whether you want to take a risk with TX or risk waiting too long and become too sick to even get one. Regardless, if your FEV1 is in the 20's, your quality of life can't be that great. I'm sure many doctors and post TX patients would agree that it would be the better choice to get TX then. If you're FEV1 is in the 20's, you don't have that much further to drop to loose all lung function as if you were doing much better FEV wise. I understand everyone is entitled to their own opinion and that's mine.

TwistedTanya · May 22, 2008

Yea, I know there are other things to consider. I have hung around the 30's for a long time but now I have been in the high 20's for about a year. However, I became resistant to a lot of antibiotics and my doctor thinks that if/when I become sensitive to more antibiotics that would be the window of opportunity for a TX. On the otherhand, I have a friend that got his lung TX about 10 years ago and he has always told me to not wait and get TX as soon as I was able. He has known people that waited too long and got sick and died before they were able to get a transplant. So the question is whether you want to take a risk with TX or risk waiting too long and become too sick to even get one. Regardless, if your FEV1 is in the 20's, your quality of life can't be that great. I'm sure many doctors and post TX patients would agree that it would be the better choice to get TX then. If you're FEV1 is in the 20's, you don't have that much further to drop to loose all lung function as if you were doing much better FEV wise. I understand everyone is entitled to their own opinion and that's mine.

TwistedTanya · May 22, 2008

Yea, I know there are other things to consider. I have hung around the 30's for a long time but now I have been in the high 20's for about a year. However, I became resistant to a lot of antibiotics and my doctor thinks that if/when I become sensitive to more antibiotics that would be the window of opportunity for a TX. On the otherhand, I have a friend that got his lung TX about 10 years ago and he has always told me to not wait and get TX as soon as I was able. He has known people that waited too long and got sick and died before they were able to get a transplant. So the question is whether you want to take a risk with TX or risk waiting too long and become too sick to even get one. Regardless, if your FEV1 is in the 20's, your quality of life can't be that great. I'm sure many doctors and post TX patients would agree that it would be the better choice to get TX then. If you're FEV1 is in the 20's, you don't have that much further to drop to loose all lung function as if you were doing much better FEV wise. I understand everyone is entitled to their own opinion and that's mine.

TwistedTanya · May 22, 2008

Yea, I know there are other things to consider. I have hung around the 30's for a long time but now I have been in the high 20's for about a year. However, I became resistant to a lot of antibiotics and my doctor thinks that if/when I become sensitive to more antibiotics that would be the window of opportunity for a TX. On the otherhand, I have a friend that got his lung TX about 10 years ago and he has always told me to not wait and get TX as soon as I was able. He has known people that waited too long and got sick and died before they were able to get a transplant. So the question is whether you want to take a risk with TX or risk waiting too long and become too sick to even get one. Regardless, if your FEV1 is in the 20's, your quality of life can't be that great. I'm sure many doctors and post TX patients would agree that it would be the better choice to get TX then. If you're FEV1 is in the 20's, you don't have that much further to drop to loose all lung function as if you were doing much better FEV wise. I understand everyone is entitled to their own opinion and that's mine.

3 month wait list for TX !!!

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