Cleveland Clinic?
- Thread starter Jane
- Start date
There is someone on here that was transplanted at CC. Have you been evaluated there yet? The director and the team are amazing people! We have absolutely no complaints with CC as a whole, every one is super nice, friendly and so very helpful. The temporary lodging they have is not the most comfortable, we chose to stay downtown when we returned for appointments. My daughter was listed at CC until winter set in and she opted to move to CA as she was double listed with Stanford while living in NE.
Good luck in your decision.
Good luck in your decision.
Jane, I know there have been much talk about the different clinics in the past...I wonder if BeautifulSoul was transplanted in Cleveland...she is a good result!
On a different note, I love the city of Cleveland. If you have to spend time there...it is of course on the Lake Erie and there is a necklace of parks. The museum is World Class! I think think this would be a good distraction. I know how you love art and beauty.
Importantly, Peter and I are praying for you and your family. I am so glad that we had the opportunity to meet you all!
God of all breathe, be with Jesse and his family, as they move through these life giving changes. Jane has been a missionary of information and empathy here at cysticfibrosis.com. Let her know and feel our prayers and presence.
Imogene
On a different note, I love the city of Cleveland. If you have to spend time there...it is of course on the Lake Erie and there is a necklace of parks. The museum is World Class! I think think this would be a good distraction. I know how you love art and beauty.
Importantly, Peter and I are praying for you and your family. I am so glad that we had the opportunity to meet you all!
God of all breathe, be with Jesse and his family, as they move through these life giving changes. Jane has been a missionary of information and empathy here at cysticfibrosis.com. Let her know and feel our prayers and presence.
Imogene
J
John O
Guest
Hi Jane,
My second cousin was transplanted at CC for her lungs. She loved the team there!
In fact watch for my blogger interview with her next monday. You will see her Q&A about lung transplant and CC.
Feel free to message me for her email as she loves to talk with people who are listed.
http://livingmydreamswithcf.blogspot.com/
John
My second cousin was transplanted at CC for her lungs. She loved the team there!
In fact watch for my blogger interview with her next monday. You will see her Q&A about lung transplant and CC.
Feel free to message me for her email as she loves to talk with people who are listed.
http://livingmydreamswithcf.blogspot.com/
John
beautifulsoul
Super Moderator
Jeanne, I was transplanted in Pittsburgh, PA. Just putting that out there in case anyone else in wondering. Jane- Sorry I have no info about Cleveland. I have been hearing many success stories about Cleveland over in the transplant group on Facebook.
cftransplant
New member
I would likely go with the Cleveland Clinic, they are close to home and that would be a very large advantage. I checked their numbers, they look good and they certainly do enough to be a serious center.
Questions I would ask both centers:
1) Do you re transplant?
2) What is your 5 year survival numbers? (not on Cleveland site)
3) How is your PT and what are your PT requirements?
4) Can you put me in contact with a CF done at your center?
5) Ask on the stability of the staff, what kind of turn over of the docs, and TX coordinators. Less turn over the better in my mind.
I went to Duke, they took cepacia's and are a very fine center. They had a great PT program, it may have downgraded a little. They will consider re TX. They were and are 2,800 miles from home. Duke has some different policies. If you want any information, send me an e-mail.
CF cepacia 63 and 13 years out.
Questions I would ask both centers:
1) Do you re transplant?
2) What is your 5 year survival numbers? (not on Cleveland site)
3) How is your PT and what are your PT requirements?
4) Can you put me in contact with a CF done at your center?
5) Ask on the stability of the staff, what kind of turn over of the docs, and TX coordinators. Less turn over the better in my mind.
I went to Duke, they took cepacia's and are a very fine center. They had a great PT program, it may have downgraded a little. They will consider re TX. They were and are 2,800 miles from home. Duke has some different policies. If you want any information, send me an e-mail.
CF cepacia 63 and 13 years out.
Thank you Jeanne for your kindness and support.
musclemania70
New member
i was transplanted at Pitt too- same as Amber.
I would go there again in a heartbeat.
I had the choice between Pitt and Cleveland and I chose Pitt because my cf center told me that CC waits too long to transplant people. (like until they are literally on their last breath). Then a staff person at the same clinic had to get a tx and she chose Pitt too. I think that says a lot.
Not sure if Pitt is an option for you, but you may want to consider it. have you met the docs at each of these places? that could be the difference. i could never say enough good things about the docs in pitt.
I would go there again in a heartbeat.
I had the choice between Pitt and Cleveland and I chose Pitt because my cf center told me that CC waits too long to transplant people. (like until they are literally on their last breath). Then a staff person at the same clinic had to get a tx and she chose Pitt too. I think that says a lot.
Not sure if Pitt is an option for you, but you may want to consider it. have you met the docs at each of these places? that could be the difference. i could never say enough good things about the docs in pitt.
I would chime in about Rock n Roll hall of fame, Cleveland Art Museum, museum of natural history, botanical garden, Browns stadium, Lakeview Cemetary, Marine Aquarium fashioned out of an old red brick factory on Lake Erie water front, some really good ethnic restaurants, and much within walking distance and tram. Waiting can be eased with such ample distractions.
cftransplant
New member
Musclemania70 is correct.
Check the waiting time at the centers you are considering. I chose a center based on this years ago, the second runner up would have had me wait much longer than I had to live. Pitt is reported to have a lot of crime in the area (a conversation a week ago). Years ago they were not serious on cepacia. They are an excellent center with good numbers. Hard to check which center takes the tougher cases. Does Pitt re-TX?
CF TX 63 cepacia 14 years out
Check the waiting time at the centers you are considering. I chose a center based on this years ago, the second runner up would have had me wait much longer than I had to live. Pitt is reported to have a lot of crime in the area (a conversation a week ago). Years ago they were not serious on cepacia. They are an excellent center with good numbers. Hard to check which center takes the tougher cases. Does Pitt re-TX?
CF TX 63 cepacia 14 years out