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  • My wife and I along with the social worker at one of the local hospitals helped to start one for kidney patients. I hope that this gave them the idea of doing this for other transplant patients, too.

  • I was transplanted (liver and kidney) 7 years ago at the Medical Univ. of South Carolina (Charleston).  At that time there wasn't a support group so I started one almost three years ago.  It was kind of tough to get it started, but once the social workers at the hospital started telling other patients about it the group has become quite a success.  We meet once a month and we get pre and post-transplant patients at each meeting, caregivers, along with a social worker from the hospital.  We meet at the hotel where the post-transplant patients stay while recuperating.  At this month's meeting we're having the head physician of the kidney/pancreas program give a talk along with a Q&A session.  Last month's meeting included a presentation from one of the pharmacists.

    Carol

  • They have  tx support groups at my hospital (Ochsner) in the New Orleans area and it is open to all pre and post transplant patients. They have also started a Caregivers support group. Caregivers are also welcome at the tx meetings. 

  • Hi David,

    I had my transplant in Charleston, SC at the Medical University of SC 2 years ago and there are support groups there.  I believe there is a support group in the upstate.  I live in Columbia, the capital of SC.  As far as I know we do not have a group in Columbia.  I have been considering starting one.  I would have to go through my transplant center and then find a location.  Any ideas would be most appreciated.

    • Hey Steve, The only advice I can give is check with your Txplnt cntr for the way to go, Good luck with it and I hope you succeed with it , as far as Txplnt groups here in the Syracuse  area of NY theres 2  both eye tx. only heart support near me is actually at my txplnt cntr in Rochester NY, which is once a month and its a differant proffessional every meeting, the few i have been to there is no clear direction in which they go, and there is not a big turn out,

  • hey Humminbird,  its pretty much the same here,  I was at a local hospital today , my cardio doc ask me if I would come down and chat with a few people who may be going through heart txpnts someday , their frightened, have no place to turn to, and are not sure what this all is about, so I went and chatted , turns out their a bit relieved and feel the same way we all do,  why is there not support ?

    humminbird said:

    I live in a suburb of Los Angeles and you would think there is one close that I could go to but NO... I had a transplant at USC on June 5, 2009.  They have a support group there but 

    1.  It is too far

    2. It is for people that are going to have a transplant.. not for people that had one...:(

  • I live in a suburb of Los Angeles and you would think there is one close that I could go to but NO... I had a transplant at USC on June 5, 2009.  They have a support group there but 

    1.  It is too far

    2. It is for people that are going to have a transplant.. not for people that had one...:(

  • As far as I know there is not a Transplant support group in the Greater Cincinnati, Oh area.  We have attended a American Lung Association monthly meetings but that is all we could find.  If anyone knows of any please post.  Dick

  • Thx Walter,  looking foward to looking at this web site you provide ,  



    Walter J. Blacha said:

    David, we had our monthly Heart Transplant support group meeting yesterday.  The Social worker that I wanted to discuss things with was there and we had a little discussion.  It seems that our group is pretty much in the lead nationally with regard to supporting transplant and VAD patients.  She mentioned that she has attended several transplant/social worker conferences and she hasn't found anyone that is doing things to the same degree that we are.  In fact she has begun mentoring different groups in the methods that we use.  It appears that one of the most important issues is funding.  As you might expect, the time involved and the resources needed can amount to a substantial expense to any organization.  We provide some of our own funding with an annual hockey game between the transplant surgeon staff and the cardiologists.  I think this is a good fit for this community, but may not work elsewhere.  The ice time is donated and many business organizations provide funding as well.  Admission is free, but donations are requested.  This allows us to provide a summer picnic and a Xmas Holiday party every year.  The U of M provides the social workers gratis.  From my perspective, it was the social workers that drove this group into existence.  They pushed the medical staff for additional funding as more transplant and VAD patients were being treated.  They went from 1 part-time social worker to currently 2.5.  All are very dedicated to providing the assistance that patients need.  

    The sad part of all of this is that there is no central place to direct you to for building/developing a support group for your local community at this time.  The next best thing would be to have your transplant center contact the U of Michigan Hospital Cardiac Center and inquire about how they have organized their Heart Transplant Support group.  That might get the ball rolling a bit and provide some support for your challenge.

    Additionally I found another reference for support groups via UNOS.  I visited their website and found a reference to support groups.  It doesn't appear to be very exhaustive, since I didn't even see my group identified there.  The website is located at http://www.transplantliving.org/community/support-groups/

    I hope that this info is useful to you.  Sorry for the long delay in posting it.

  • David, we had our monthly Heart Transplant support group meeting yesterday.  The Social worker that I wanted to discuss things with was there and we had a little discussion.  It seems that our group is pretty much in the lead nationally with regard to supporting transplant and VAD patients.  She mentioned that she has attended several transplant/social worker conferences and she hasn't found anyone that is doing things to the same degree that we are.  In fact she has begun mentoring different groups in the methods that we use.  It appears that one of the most important issues is funding.  As you might expect, the time involved and the resources needed can amount to a substantial expense to any organization.  We provide some of our own funding with an annual hockey game between the transplant surgeon staff and the cardiologists.  I think this is a good fit for this community, but may not work elsewhere.  The ice time is donated and many business organizations provide funding as well.  Admission is free, but donations are requested.  This allows us to provide a summer picnic and a Xmas Holiday party every year.  The U of M provides the social workers gratis.  From my perspective, it was the social workers that drove this group into existence.  They pushed the medical staff for additional funding as more transplant and VAD patients were being treated.  They went from 1 part-time social worker to currently 2.5.  All are very dedicated to providing the assistance that patients need.  

    The sad part of all of this is that there is no central place to direct you to for building/developing a support group for your local community at this time.  The next best thing would be to have your transplant center contact the U of Michigan Hospital Cardiac Center and inquire about how they have organized their Heart Transplant Support group.  That might get the ball rolling a bit and provide some support for your challenge.

    Additionally I found another reference for support groups via UNOS.  I visited their website and found a reference to support groups.  It doesn't appear to be very exhaustive, since I didn't even see my group identified there.  The website is located at http://www.transplantliving.org/community/support-groups/

    I hope that this info is useful to you.  Sorry for the long delay in posting it.

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