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SteveD
Member
Username: Sdivot
Post Number: 28
Registered: 06-2008
| | Posted on Friday, March 09, 2012 - 02:51 am: | 
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I am so incredibly frustrated with my transplant center in Houston. I strongly dislike the system, the doctor's god complex, the lack of personal attention, etc. Every time I have to go to the clinic, it is an exercise in frustration.
I could elaborate, but the purpose of this thread is to ask if there are people who have to travel long distances to their transplant centers. How do you handle this? What if you need something, whether major or minor? What if you have to go to the hospital? My family is limited in number, and they cannot simply drop everything and travel to wherever I'm hospitalized to support me.
How do you all handle these issues? The logistics of not being near my transplant center seem a big daunting.
Thanks for any input you may have,
Steve
Steve D
CF, Dbl Lung Transplant 4-4-08
Houston, TX |
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SteveD
Member
Username: Sdivot
Post Number: 35
Registered: 06-2008
| | Posted on Friday, March 09, 2012 - 04:16 am: |
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So sorry about the multiple postings! When I tried to post the message, it kept indicating a server error. I didn't think it was going through, so I tried several times. Little did I realize, the message went through every time!
Sorry.....
Steve
Steve D
CF, Dbl Lung Transplant 4-4-08
Houston, TX |
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Joanne Schum
Member
Username: Joannebutterfly
Post Number: 286
Registered: 11-2011
| | Posted on Friday, March 09, 2012 - 07:57 am: |
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Steve, I think Rise can delete the repeat posts.. not a big deal.
I live in Rochester, NY, have CF and received my double lung transplant Sept 12, 1997 in Chapel Hill, North Carolina at UNC. That is about 700 miles from my home. I started out at UNC - and actually bypassed about 5-8 centers in miles to be at UNC. My CF team in Rochester recommended UNC as the best center for those with CF. I wanted that. So glad I chose that. So that meant travelling quite a distance for all my clinic appts, and still does today.
I know at first, after tx, I was concerned about the distance, and the fact I did NOT fly!!! But a year after transplant, I finally decided to take that step and fly - ( I had a major episode of hemoptysis on an airplane when I was 23). Once I knew I could fly with confidence the distance did not matter. My CF center follows me here in Rochester. They call UNC before starting any meds, treatments to be sure that is the course they would do. I still go to UNC once a year for my clinic appt... I actually enjoy going now as I always try to get together other recipients so we can have some fun, support and live it up while at UNC. We yell, scream, sing, laugh etc, etc. and then we can recalll the pre tx days when doing that - was out of the question.
Find a center that your CF center ( or primary care doctor) is willing to work with a team out of town. I think most Lung Tx centers are willing to do that. Go and interview them, ask others their experience. The expense may be more, but I have found that is well worth the extra money it takes to get to the center.
Good luck!
Joanne
Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
Web Site: http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Chat Site: http://xat.com/LungTransplantSupportforPatients |
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Joanne Schum
Member
Username: Joannebutterfly
Post Number: 287
Registered: 11-2011
| | Posted on Friday, March 09, 2012 - 07:59 am: |
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Steve, I think Rise can delete the repeat posts.. not a big deal.
I live in Rochester, NY, have CF and received my double lung transplant Sept 12, 1997 in Chapel Hill, North Carolina at UNC. That is about 700 miles from my home. I started out at UNC - and actually bypassed about 5-8 centers in miles to be at UNC. My CF team in Rochester recommended UNC as the best center for those with CF. I wanted that. So glad I chose that. So that meant travelling quite a distance for all my clinic appts, and still does today.
I know at first, after tx, I was concerned about the distance, and the fact I did NOT fly!!! But a year after transplant, I finally decided to take that step and fly - ( I had a major episode of hemoptysis on an airplane when I was 23). Once I knew I could fly with confidence the distance did not matter. My CF center follows me here in Rochester. They call UNC before starting any meds, treatments to be sure that is the course they would do. I still go to UNC once a year for my clinic appt... I actually enjoy going now as I always try to get together other recipients so we can have some fun, support and live it up while at UNC. We yell, scream, sing, laugh etc, etc. and then we can recalll the pre tx days when doing that - was out of the question.
Find a center that your CF center ( or primary care doctor) is willing to work with a team out of town. I think most Lung Tx centers are willing to do that. Go and interview them, ask others their experience. The expense may be more, but I have found that is well worth the extra money it takes to get to the center.
Good luck!
Joanne
Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
Web Site: http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Chat Site: http://xat.com/LungTransplantSupportforPatients |
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Joanne Schum
Member
Username: Joannebutterfly
Post Number: 288
Registered: 11-2011
| | Posted on Friday, March 09, 2012 - 08:01 am: |
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Steve,
The same thing happened to me. "SERVER ERROR".....not sure it must be a program for the site is a little mixed up.
Maybe it is on Prograf and doing weird things!!! Just like us!!!
Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
Web Site: http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Chat Site: http://xat.com/LungTransplantSupportforPatients |
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John D
Member
Username: John_d
Post Number: 44
Registered: 09-2011
| | Posted on Friday, March 09, 2012 - 08:04 am: |
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Hi Steve I am a 4 /12 hour drive from my transplant center, which is Cleveland Clinic. Most visits have been requiring that I go the day before and stay overnight. That is becoming more difficult, as my wife is disabled. I have had one stay there since my transplant (CMV) and fortunately I was asymptomatic and had no problem driving myself. The biggest problems for me come when I have a procedure that requires someone be with me. Then I have to have my daughter's support, and she's busy. It did not go well this week when I was away. I'm going to try to arrange things so I don't have any nights away. That will require the transplant center allowing more to be done in my home city. An ongoing effort. But I'm not unhappy with my transplant center, so I'll do what is necessary.
Heart transplant
March 16, 2010
Cleveland Clinic |
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 561
Registered: 12-2009
| | Posted on Friday, March 09, 2012 - 08:53 am: |
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Good morning Steve - I'm at UCSD here in San Diego, and where I now live here I want to tell you of many of the fellow transplant folks that come here from Hawaii (where there is no facility for Heart/Lung Transplant) and another friend that comes in from Las Vegas.
In these cases our center works with local medical centers for things such as bloodwork and x-rays (which can be transmitted electronically), reducing the number of visits. For non transplant issues these folks use local facilities - who in turn notify UCSD of things that can have an effect on the transplant.
They still need to come in 3 - 4 times a year (more if there are issues), but it becomes managable for them.
Hope this helps - good luck! Stay well . . .
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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ajs
Forum Leader
Username: Ajs
Post Number: 728
Registered: 03-2008
| | Posted on Friday, March 09, 2012 - 08:59 pm: |
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Hi Steve,
The simple fact is that if you are doing well, it doesn't matter nearly so much. I am just a little nearer out than you, but I only go to Duke every six months now. It's a five hour drive, and as others have said, I get lots of things done here in Maryland.
Where you live, I think you have Dallas, and the next choice maybe St Louis? Tough call. How often are you going to clinic? The hardest thing for me was the 9 bronchs in the first 18 months. Not only the long drive, but not having anyone to pick me up after. I have called on so many favors it's crazy. Even a woman i went to high school with in '75 who happens to live in Raleigh! Good luck, no easy answer to this one.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Nola
Member
Username: Nola
Post Number: 1
Registered: 09-2013
| | Posted on Saturday, September 14, 2013 - 12:30 pm: |
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I lived in New Orleans, but received my transplant at Houston Methodist in the post-Katrina era. I can totally relate to your characterization of the doctors' God complexes and other post-transplant treatment issues. Though I must add that the transplant unit staff was remarkably wonderful.
I moved back to New Orleans one year after surgery and initially, trekked the 5 hour drive each way to continue with Houston Methodist. After an while, I checked our Ochsner Hospital's transplant team in New Orleans. For me, this was the place to be for a number of reasons. Key among them, of course, was proximity. Additionally, I much prefer the protocols and policies at Ochsner over Methodist. In my opinion, Methodist is over zealous resulting in numerous tests that are unnecessary and costly. Typical of a New Orleans institution, Ochsner is more laid back (less aggressive) and their success/survival rates are comparable.
Summary: Check out Ochsner. There is a hotel attached to the hospital that is perfect for us germaphobes. |
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