musclemania70
New member
I can also choose Columbia if I wanted to but they are not a 'center of excellence' either......
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Transplant Center
- Thread starter tleigh
- Start date
musclemania70
New member
I can also choose Columbia if I wanted to but they are not a 'center of excellence' either......
chuckstyl5
New member
NY Presbyterian FOR THE WIN!!!
chuckstyl5
New member
NY Presbyterian FOR THE WIN!!!
chuckstyl5
New member
NY Presbyterian FOR THE WIN!!!
N
ncyra399
Guest
I didn't do much research, I just used my gut/heart. I was told by insurance first that I needed to go to Loyola in Chicago, Mayo or University of Minnesota. Chicago is the closest to me and I heard great things about Loyola and their transplant program. however, the more I thought about it, the more I didn't want to be away from home, my family, my medical team. I truly believe that if I would've went to one of the "recommneded centers of excellence" I wouldn't have done as well as I did because I was at home! I fought to have my transplant done at my home hosptial because I knew they did great work even though they had a small program. You have to do what's right and comfortable for you in the end. I was denied by my insurance company 3 times. I fought them to the very end and won! So... please be sure to consider yourself in your decision making. I fought against an insurance company and WON! Just remember, you need to do what's best for you!! Choose wisely and go with your heart. Good luck!!
N
ncyra399
Guest
I didn't do much research, I just used my gut/heart. I was told by insurance first that I needed to go to Loyola in Chicago, Mayo or University of Minnesota. Chicago is the closest to me and I heard great things about Loyola and their transplant program. however, the more I thought about it, the more I didn't want to be away from home, my family, my medical team. I truly believe that if I would've went to one of the "recommneded centers of excellence" I wouldn't have done as well as I did because I was at home! I fought to have my transplant done at my home hosptial because I knew they did great work even though they had a small program. You have to do what's right and comfortable for you in the end. I was denied by my insurance company 3 times. I fought them to the very end and won! So... please be sure to consider yourself in your decision making. I fought against an insurance company and WON! Just remember, you need to do what's best for you!! Choose wisely and go with your heart. Good luck!!
N
ncyra399
Guest
I didn't do much research, I just used my gut/heart. I was told by insurance first that I needed to go to Loyola in Chicago, Mayo or University of Minnesota. Chicago is the closest to me and I heard great things about Loyola and their transplant program. however, the more I thought about it, the more I didn't want to be away from home, my family, my medical team. I truly believe that if I would've went to one of the "recommneded centers of excellence" I wouldn't have done as well as I did because I was at home! I fought to have my transplant done at my home hosptial because I knew they did great work even though they had a small program. You have to do what's right and comfortable for you in the end. I was denied by my insurance company 3 times. I fought them to the very end and won! So... please be sure to consider yourself in your decision making. I fought against an insurance company and WON! Just remember, you need to do what's best for you!! Choose wisely and go with your heart. Good luck!!
coltsfan715
New member
When I asked about transplant my doc told me he would refer me to one of the two that was closest for me to get the information I was looking to get. For me that was either UF/Shands in Gainesville or Mayo in Jacksonville Florida. I opted for Mayo because I had been to UF Shands CF Center and was miserable there and received horrible treatment and didn't want to deal with anyone there for any reason.
When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
Good Luck
Lindsey
When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
Good Luck
Lindsey
coltsfan715
New member
When I asked about transplant my doc told me he would refer me to one of the two that was closest for me to get the information I was looking to get. For me that was either UF/Shands in Gainesville or Mayo in Jacksonville Florida. I opted for Mayo because I had been to UF Shands CF Center and was miserable there and received horrible treatment and didn't want to deal with anyone there for any reason.
When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
Good Luck
Lindsey
When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
Good Luck
Lindsey
coltsfan715
New member
When I asked about transplant my doc told me he would refer me to one of the two that was closest for me to get the information I was looking to get. For me that was either UF/Shands in Gainesville or Mayo in Jacksonville Florida. I opted for Mayo because I had been to UF Shands CF Center and was miserable there and received horrible treatment and didn't want to deal with anyone there for any reason.
<br />
<br />When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
<br />
<br />I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
<br />
<br />Good Luck
<br />Lindsey
<br />
<br />When I went to my first appointment I was tempted to visit UNC and Duke just to check them out, but my now transplant doc gave me a list of other centers that he thought I should look into if I was unsure about Mayo. They included Stanford, Pittsburgh, Columbia, Duke, UNC and a few more. I was amazed that he basically told me to go somewhere else, then he followed it with I know we can take care of you better than these places, but you need to be where you are comfortable. I left that appointment confident that I was in the right place and I never bothered looking into any other center. Also to add I have had an almost problem free post transplant experience, so I know I was in the best place for me.
<br />
<br />I agree with the other poster that says each person's center is wonderful to them. You need to be where you feel comfortable regardless of what anyone else may think of your center. That is what is most important.
<br />
<br />Good Luck
<br />Lindsey
T
tarheel
Guest
I think choosing a transplant center has to come from both your head and your gut. Having a good relationship with the transplant staff is REALLY important. My transplant center (not listed atm but...) and CF center is UNC. Honestly, it just made me feel a little bit safer that everything was in one building- you know? I mean, like, they're not going to not somehow know that you're allergic to penicillin (I'm not or anything crazy like that... just saying. Because I worry about weird things like that.) But I've looked at other centers. UPMC is a good center too. My mom wanted me to do a consult there because she was there as a nurse when they STARTED doing transplants. Yeah. My mom is OLD. (jk of course) But after meeting the staff at UNC I knew that was where I want to someday get my new lungs. I'd also add that you have to have chemistry with two team members- the doc (who is at UNC at least also the surgeon) and the transplant coordinator. Both of mine at UNC are great. The transplant coordinator emails me about studies coming out for CF that I might be eligible for- ones that she thinks would be of benefit - since a lot of studies have FEV1 cut-offs I no longer make. <div><br></div><div>Data is also really important. The staff at any consults should pretty much know most of their data off-hand. And I'd search the internet too. Not just for transplant stories, but for "surgical equipment washed in elevator fluid" stories too. (*cough* Duke *cough*) So. There's a lot to consider. But I think for pretty much everyone things end up falling into place with one center. And thankfully in all the cases I'm aware of, it works out. Unless I'm missing some huge story about a transplant patient strangling a transplant doc or something <img src="i/expressions/face-icon-small-tongue.gif" border="0"></div>
T
tarheel
Guest
I think choosing a transplant center has to come from both your head and your gut. Having a good relationship with the transplant staff is REALLY important. My transplant center (not listed atm but...) and CF center is UNC. Honestly, it just made me feel a little bit safer that everything was in one building- you know? I mean, like, they're not going to not somehow know that you're allergic topenicillin(I'm not or anything crazy like that... just saying. Because I worry about weird things like that.) But I've looked at other centers. UPMC is a good center too. My mom wanted me to do a consult there because she was there as a nurse when they STARTED doing transplants. Yeah. My mom is OLD. (jk of course) But after meeting the staff at UNC I knew that was where I want to someday get my new lungs. I'd also add that you have to have chemistry with two team members- the doc (who is at UNC at least also the surgeon) and the transplant coordinator. Both of mine at UNC are great. The transplant coordinator emails me about studies coming out for CF that I might beeligiblefor- ones that she thinks would be of benefit - since a lot of studies have FEV1 cut-offs I no longer make.<br>Data is also really important. The staff at any consults should pretty much know most of their data off-hand. And I'd search the internet too. Not just for transplant stories, but for "surgical equipment washed in elevator fluid" stories too. (*cough* Duke *cough*) So. There's a lot to consider. But I think for pretty much everyone things end up falling into place with one center. And thankfully in all the cases I'm aware of, it works out. Unless I'm missing some huge story about a transplant patient strangling a transplant doc or something <img src="i/expressions/face-icon-small-tongue.gif" border="0">
T
tarheel
Guest
I think choosing a transplant center has to come from both your head and your gut. Having a good relationship with the transplant staff is REALLY important. My transplant center (not listed atm but...) and CF center is UNC. Honestly, it just made me feel a little bit safer that everything was in one building- you know? I mean, like, they're not going to not somehow know that you're allergic topenicillin(I'm not or anything crazy like that... just saying. Because I worry about weird things like that.) But I've looked at other centers. UPMC is a good center too. My mom wanted me to do a consult there because she was there as a nurse when they STARTED doing transplants. Yeah. My mom is OLD. (jk of course) But after meeting the staff at UNC I knew that was where I want to someday get my new lungs. I'd also add that you have to have chemistry with two team members- the doc (who is at UNC at least also the surgeon) and the transplant coordinator. Both of mine at UNC are great. The transplant coordinator emails me about studies coming out for CF that I might beeligiblefor- ones that she thinks would be of benefit - since a lot of studies have FEV1 cut-offs I no longer make.<br>Data is also really important. The staff at any consults should pretty much know most of their data off-hand. And I'd search the internet too. Not just for transplant stories, but for "surgical equipment washed in elevator fluid" stories too. (*cough* Duke *cough*) So. There's a lot to consider. But I think for pretty much everyone things end up falling into place with one center. And thankfully in all the cases I'm aware of, it works out. Unless I'm missing some huge story about a transplant patient strangling a transplant doc or something <img src="i/expressions/face-icon-small-tongue.gif" border="0">