transplant centers

[jonn r]

so i am not to happy with the transplant center that i have been with for over 2 years and i would like to find a new one ......any ideas how.....and if i join a new center does my time change for being on the list???








EDITED:Moved to transplant section-kitkatz,Moderator

[okarol]

You can transfer your time to a new center.
Or if it's outside your procurement area, you can keep you wait time at the first one and start a new wait time for the new local area.
Sorry you aren't having good service from your current center. 

[Chris]

If we are talking the US, then yes.
I have done so when I was first listed as a kidney only transplant patient. After finding out that there is a pancreas transplant and being done simultaneously, but my first center was not doing them yet and wanted me to be one of the first, I went looking elsewhere. My eyes opened up with information listening to each centers presentation. Some had old information, some had current stats and figures, and one didn't give much of a presentation or anything to go home with to think about. When I chose my new center (it was in the same area, we have 5 centers in Chicago), my wait time transferred over. I just had to sign a form that I was transferring and the staff took over the rest.

Now one question I have is ar you in need to find out other locations in your immediate area?

[paris]

Getting listed at a second center shouldn't be a problem.  If you contact the center yourself, they should beable to help you through the process.  Good luck

[jonn r]

Now one question I have is ar you in need to find out other locations in your immediate area?

i am willing to travel to a good center out of new england.....



Edited: Fixed quote tag error - okarol/admin

[jonn r]

also what is the best way to find a kidney/panc center

[Chris]

I'll have to find the link I have that states how many a hospital did and the survial rates of the graft. This one may take some time to find.

Here is some information from http://www.kidney.org/atoz/atozItem.cfm?id=159

State Kidney Programs 
1-800-733-7345

National Foundation for Transplants 
1-800-489-3863

Transplant Foundation
1-804-285-5115

contacting your local National Kidney Foundation affiliate, or by
calling the national toll-free number: 1-800-622-9010.

[pelagia]

This site will get you to all the data for the various centers in the US.

http://www.ustransplant.org/csr/current/csrDefault.aspx

click on a state, then click on "kidney centers" or "kidney-pancreas centers"

you will get a list of centers performing transplants

when you select a particular center you will be taken to a page with drop down menus that make more info available for each center

 

[boxman55]

Wow, Chris and pelagia. What great information for all...Thanks

[karen547]

I am glad someone asked this! I have often wondered about being listed at other transplannt centers specifically one in california where my sister lives! Thanks!

[BigSteve]

Don't forget that you have a limited amount of time to get to the transplant center when
you are called. You're o.k. if they can tell you in advance you are at the top to the list, but
what if you are called and need to be there in a couple of hours. I was thinking of listing in
Boise, Idaho where my sister lives until I checked and found there are no transplant centers there.
You have to go to Washinton or Oregon.

[jonn r]

so i have been looking at some places........what do you like about the place that you all goto and why.....thanks

jonn

[adairpete]

When my neph referred me to a transplant center she recommended 1 of the 2 in my area over the other.  She said they were both good, but the dr's at the one had a better bedside manner in her opinion and the other was a teaching hospital (and I don't want to be a teaching tool!).  I like my center because it seems like all my questions, fears, in fact my whole situation is routine for them.  They have an established protocol for the whole process and I just have to show up and ask my questions and the whole thing is explained without them blinking an eye.  I find it very comforting that something as scary as a transplant is just another day at the office for them.  They are caring but their overall attitude is that they're there to fix me up and send me out better than before. 

My suggestion is to ask your neph if there are transplant patients you can talk to from the different centers (or ask the centers themselves) and ask your neph what he/she knows about each of the centers you're looking at.

[Romona]

I like the University of Pittsburgh. Pennsylvania has one of shortest waiting times. Florida is another state that has a short wait. I am treated very well there. There are a few minor issues that have come up with my labs. The local hospital that handles the labs doesn't seem to get results to Pittsburgh very quickly. I don't know where the mis communication comes in. I get my labs faxed to me and know what numbers to look for and when to call with questions. I see other specialists with in the hospital system and have been pleased with the way they work together.

[pelagia]

The first transplant center my husband went to was part of a university teaching hospital.  It's not a big city university hospital like Johns Hopkins or the hospitals in Boston, but it is the biggest hospital within 2 hours of home.  It was okay, but, it just didn't feel completely right to him.  It was stressful getting in and out of the place, hours and hours for every visit, and "a number not a name" sort of approach.  The transplant stats looked slightly better at the university hospital relative to a smaller, "suburban" transplant center in the same city.  But there were positives for the smaller hospital too - it received a "top 50 hospitals in the US" award in 2007 and we feel that the surgeons and staff of the clinic are great.  Given the number of folks who have problems due to things like staph infections or negligence, we wanted to be sure my husband was in a hospital where the level of care would be excellent.  We also considered the fact that he was relatively healthy and had no major complications or special circumstances. In the end he re-listed at the smaller hospital. 

On the down side, they made him go through all the testing again, either because the first center would not send the records, or they were over a year old, or, whatever.  During the operation, both of the transplant surgeons worked on my husband and a third surgeon worked on his donor.  The harvesting of the kidney was done laproscopically, which was not offered at the university hospital.  The SICU had the most amazing nurses, many who had been there for a long time, which I think speaks well for an organization. He was told that we could call with questions or concerns anytime day or night and was given a list of numbers to call.  After 1 month of visiting the clinic post-transplant my husband now sees a local neph who coordinates closely with the clinic.  If my husband calls the clinic directly with a question or concern, they always call him back promptly. 

So, what I'm trying to say is that we considered more than just the transplant stats.  If he had more issues to deal with we might have looked for a more cutting edge transplant center.  I don't think the university hospital offered steroid free immunosuppression, which I didn't know much about until I started reading here at IHD, but that might have been a difference in their favor. 

In the end, I feel like he (we) made the right choice.

[skyedogrocks]

Hi John - Unless you are moving out of the New England area, don't know why you wouldn't want to stay with a Boston hospital?  Rob is listed at Mass General Hospital and we have heard nothing but great things about the surgeons.  Rob's surgeon is a great guy, down to earth and at the end of one of their meetings was asking Rob some Electrical questions (Rob's and Electrician).  The one thing they won't do is a Pancreas/Kidney transplant together.   They feel a patient has better chances of keeping both organs when the operation is done separately.  They lead the nation in best reaction to kidney rejection within 24 hours.  They also accept altruistic donors which is why he is listed with them. 

He was listed at Beth Israel, however, they do not accept altruistic donors, they head of transplants doesn't believe in it.  That attitude made Rob switch to Mass General.  I have heard great things about The Lahey Clinic's transplant center in Burlington, MA, University of Massachusetts Hospital in Worcester, MA and Providence General Hospital in Providence, RI.

The only sucky thing about Northeast Hospitals is the waiting list.  Rob did get a call back in August and that was after 2 1/2 years on the waiting list.  Unfortunately the organs didn't prove to be viable.

Good luck!

[Chris]

The one thing they won't do is a Pancreas/Kidney transplant together.   They feel a patient has better chances of keeping both organs when the operation is done 

This still boggles my mind why a couple centers do this. I feel there are a few faults with this logic and glad I had a simultaneous k/p tx. If a person is still working and takes time off for a transplant and possible complications post tx and lets say a year later get a pancreas, how will the employer feel about all this time being taken off, the medical insurance claims. Then the cost of each transplant, the trauma to the body, more scar tissue that has potential or problems, and the risk I am always told about going in again for another surgery in that area. I need something to better understand their theory/hypothesis/philosophy, but still would want it done all at once so I wouldn't have to slow down with life.

[sis2907]

I am interested in seeing if anyone has any information about Southwest Florida Regional Medical Center Fort Myers Florida. I am thinking of changing centers and would like to hear from anyone who has any information or experience about or with this center. If anyone has had any dealing with this center and would be so kind to share I would be so greatful! By the way it is for a Kidney Transplant. Thanks so much. Wanda

[Wallyz]

From ustransplant.org:

   Center Activity (07/01/2007-06/30/2008)   Center   Region   United States       Tables for More Information
Deceased donor transplants (n=number)   31   1,546   10,544      07C,08C,09C
Living donor transplants (n)   9   533   5,862      07L,08L,09L
On waitlist at start (n)   81   9,444   73,343      01,02,03
On waitlist at end (n)   120   10,388   78,611      01,02
    Number of new patient registrations (n)   91   4,480   32,978       01,02

About 40 transplants a year, 3-4 year wait, and thier 1 year numbers are in line with national averages.

Looks like a quality center, what are you comparing it with?