Tx Center - Duke vs Cleveland vs Barnes St Louis

P

PinkPigg

New member
Hey All,

I'm in Indianapolis and just found out that my local transplant center is out of network. Centers that make sense for me are:

Cleveland Clinic - 5-6 hours from home
Barnes Jewish St Louis - 5 hours from home
Duke - have relatives in NC

Any input on the above centers would be greatly appreciated. I'm interested in their process, experience/success with CF, relocation periods pre/post tx for those out of state, your personal experiences etc.

Thanks SO MUCH!!!
Steph
 
P

PinkPigg

New member
Hey All,

I'm in Indianapolis and just found out that my local transplant center is out of network. Centers that make sense for me are:

Cleveland Clinic - 5-6 hours from home
Barnes Jewish St Louis - 5 hours from home
Duke - have relatives in NC

Any input on the above centers would be greatly appreciated. I'm interested in their process, experience/success with CF, relocation periods pre/post tx for those out of state, your personal experiences etc.

Thanks SO MUCH!!!
Steph
 
P

PinkPigg

New member
Hey All,
<br />
<br />I'm in Indianapolis and just found out that my local transplant center is out of network. Centers that make sense for me are:
<br />
<br />Cleveland Clinic - 5-6 hours from home
<br />Barnes Jewish St Louis - 5 hours from home
<br />Duke - have relatives in NC
<br />
<br />Any input on the above centers would be greatly appreciated. I'm interested in their process, experience/success with CF, relocation periods pre/post tx for those out of state, your personal experiences etc.
<br />
<br />Thanks SO MUCH!!!
<br />Steph
 
C

CountryGirl

New member
Hey,

I'm Anna. I'm waiting at Cleveland for my second tx. They are a great tx center....HUGE, but everyone there from the people who help you find your way to the drs and nurses, to the cleaning lady are pleasent and helpful!

The head Dr. there is so so so nice, she genuinly cares about you and will do all she can to find you lungs that are perfect for you. I haven't been transplanted yet, and the wait is usually longer for a second tx so I can't help you there. She also had me meet the surgeon who works with many of the CFers, he seemed mostly personable as well.

They seem like a very CF oriented clinic, like they do a lot of CFers and I think they are very successful with them. I personally don't like the city but the GREAT part is that I didnt have to move to wait for my lungs and be listed...I'm in Nebraska and they said they'd just send a jet for me when I get called. The Dr insisted I didn't move, that it would be easier to wait in a normal environment, with my family and friends around...I liked that.
 
C

CountryGirl

New member
Hey,

I'm Anna. I'm waiting at Cleveland for my second tx. They are a great tx center....HUGE, but everyone there from the people who help you find your way to the drs and nurses, to the cleaning lady are pleasent and helpful!

The head Dr. there is so so so nice, she genuinly cares about you and will do all she can to find you lungs that are perfect for you. I haven't been transplanted yet, and the wait is usually longer for a second tx so I can't help you there. She also had me meet the surgeon who works with many of the CFers, he seemed mostly personable as well.

They seem like a very CF oriented clinic, like they do a lot of CFers and I think they are very successful with them. I personally don't like the city but the GREAT part is that I didnt have to move to wait for my lungs and be listed...I'm in Nebraska and they said they'd just send a jet for me when I get called. The Dr insisted I didn't move, that it would be easier to wait in a normal environment, with my family and friends around...I liked that.
 
C

CountryGirl

New member
Hey,
<br />
<br />I'm Anna. I'm waiting at Cleveland for my second tx. They are a great tx center....HUGE, but everyone there from the people who help you find your way to the drs and nurses, to the cleaning lady are pleasent and helpful!
<br />
<br />The head Dr. there is so so so nice, she genuinly cares about you and will do all she can to find you lungs that are perfect for you. I haven't been transplanted yet, and the wait is usually longer for a second tx so I can't help you there. She also had me meet the surgeon who works with many of the CFers, he seemed mostly personable as well.
<br />
<br />They seem like a very CF oriented clinic, like they do a lot of CFers and I think they are very successful with them. I personally don't like the city but the GREAT part is that I didnt have to move to wait for my lungs and be listed...I'm in Nebraska and they said they'd just send a jet for me when I get called. The Dr insisted I didn't move, that it would be easier to wait in a normal environment, with my family and friends around...I liked that.
 
R

Ready2Dance

New member
I had the same 3 choices when I looked into clinics! Well, those were my top picks at least. I ended up at Cleveland and I couldn't be happier. The wait time for first timers is roughly around 2 months. Depending on size and blood type of course, that could change your wait time. They did roughly 150 transplants last year... so let the numbers speak for themselves. They kinda know what they're doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
The pre-care is awesome and they realize you're sick and work around it. The post-care is just as great. I'm over a year out and still, when I call them I always get a call back that day with an answer... no matter how stupid the question. And Anna is right, everyone there is SUPER nice. You can tell they want to help you and they love their jobs. Best of luck making this decision!!
 
R

Ready2Dance

New member
I had the same 3 choices when I looked into clinics! Well, those were my top picks at least. I ended up at Cleveland and I couldn't be happier. The wait time for first timers is roughly around 2 months. Depending on size and blood type of course, that could change your wait time. They did roughly 150 transplants last year... so let the numbers speak for themselves. They kinda know what they're doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
The pre-care is awesome and they realize you're sick and work around it. The post-care is just as great. I'm over a year out and still, when I call them I always get a call back that day with an answer... no matter how stupid the question. And Anna is right, everyone there is SUPER nice. You can tell they want to help you and they love their jobs. Best of luck making this decision!!
 
R

Ready2Dance

New member
I had the same 3 choices when I looked into clinics! Well, those were my top picks at least. I ended up at Cleveland and I couldn't be happier. The wait time for first timers is roughly around 2 months. Depending on size and blood type of course, that could change your wait time. They did roughly 150 transplants last year... so let the numbers speak for themselves. They kinda know what they're doing <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />The pre-care is awesome and they realize you're sick and work around it. The post-care is just as great. I'm over a year out and still, when I call them I always get a call back that day with an answer... no matter how stupid the question. And Anna is right, everyone there is SUPER nice. You can tell they want to help you and they love their jobs. Best of luck making this decision!!
 
N

nu65

New member
I was just transplanted 3 weeks ago at Duke University. I moved from FL to Durham, NC in preparation for the transplant. The number one thing about Duke is they have the best rehab pre- and post-tx in the US. THey want you to move within 2 hours of the center so you can attend rehab 5 days a week. It's a lot of hard work but worth it as you lose a lot of strength post-tx that you will need.

I like my Dr. as well. I've heard some complaints about other drs, I believe there are 5 pulmonologists working with transplant, but have met most of them and didn't see a problem. Please email me if you want more info! jnewport@mail.usf.edu
 
N

nu65

New member
I was just transplanted 3 weeks ago at Duke University. I moved from FL to Durham, NC in preparation for the transplant. The number one thing about Duke is they have the best rehab pre- and post-tx in the US. THey want you to move within 2 hours of the center so you can attend rehab 5 days a week. It's a lot of hard work but worth it as you lose a lot of strength post-tx that you will need.

I like my Dr. as well. I've heard some complaints about other drs, I believe there are 5 pulmonologists working with transplant, but have met most of them and didn't see a problem. Please email me if you want more info! jnewport@mail.usf.edu
 
N

nu65

New member
I was just transplanted 3 weeks ago at Duke University. I moved from FL to Durham, NC in preparation for the transplant. The number one thing about Duke is they have the best rehab pre- and post-tx in the US. THey want you to move within 2 hours of the center so you can attend rehab 5 days a week. It's a lot of hard work but worth it as you lose a lot of strength post-tx that you will need.
<br />
<br />I like my Dr. as well. I've heard some complaints about other drs, I believe there are 5 pulmonologists working with transplant, but have met most of them and didn't see a problem. Please email me if you want more info! jnewport@mail.usf.edu
 
P

PinkPigg

New member
Thanks Jess,
<br />
<br />Great blog. Just sent you an email <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kholleman

New member
Tx Center - Duke vs Cleveland vs Barnes St Louis: Check out Barnes

Hi, Pinky!

I work with the CF team and lung transplant team at Barnes-Jewish. If you want to get a feel for Barnes-Jewish without having to come here, check out our Facebook page - we've had posts from some of CF/transplant patients and videos from Dr. Dan Rosenbluth who is the director of the adult CF program here. Especially look for the videos from Curtis Almeter, a CFer who had his transplant on Christmas Day. He's also a professional photographer who documented his transplant journey in photos. The address is www.facebook.com/barnesjewishhospital.

I can vouch that our team is made up of some of the most dedicated, talented, caring human beings I've ever met in my life.

But if you decide on Cleveland or Duke, be assured that they, too, are wonderful centers.

Good luck and easy breathing to you.
 
K

kholleman

New member
Tx Center - Duke vs Cleveland vs Barnes St Louis: Check out Barnes

Hi, Pinky!

I work with the CF team and lung transplant team at Barnes-Jewish. If you want to get a feel for Barnes-Jewish without having to come here, check out our Facebook page - we've had posts from some of CF/transplant patients and videos from Dr. Dan Rosenbluth who is the director of the adult CF program here. Especially look for the videos from Curtis Almeter, a CFer who had his transplant on Christmas Day. He's also a professional photographer who documented his transplant journey in photos. The address is www.facebook.com/barnesjewishhospital.

I can vouch that our team is made up of some of the most dedicated, talented, caring human beings I've ever met in my life.

But if you decide on Cleveland or Duke, be assured that they, too, are wonderful centers.

Good luck and easy breathing to you.
 
K

kholleman

New member
Tx Center - Duke vs Cleveland vs Barnes St Louis: Check out Barnes

Hi, Pinky!
<br />
<br />I work with the CF team and lung transplant team at Barnes-Jewish. If you want to get a feel for Barnes-Jewish without having to come here, check out our Facebook page - we've had posts from some of CF/transplant patients and videos from Dr. Dan Rosenbluth who is the director of the adult CF program here. Especially look for the videos from Curtis Almeter, a CFer who had his transplant on Christmas Day. He's also a professional photographer who documented his transplant journey in photos. The address is www.facebook.com/barnesjewishhospital.
<br />
<br />I can vouch that our team is made up of some of the most dedicated, talented, caring human beings I've ever met in my life.
<br />
<br />But if you decide on Cleveland or Duke, be assured that they, too, are wonderful centers.
<br />
<br />Good luck and easy breathing to you.
 
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