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I just had my workup at Tampa General for lung transplant. The team will review my case for approval next week. My question is about arranging for social support for the 3 months post surgery. We live in Delray Beach, but will have to stay in Tampa for 3 months. We don't have any support in Tampa, so we are trying to find people/friends who are available and can be on stand-by mode to come and help with my 24/7 care. We are trying to arrange for people to come for a few days to a couple of weeks at a time. This is huge favor to ask of people--to give up their lives for several days and travel at their own expense. If this were being done in Delray Beach, it would still be a challenge to coordinate, but a much easier task to get friends to help. But we don't know any one in the Tampa area who is available to help.   I would like input from others on how they made this happen when their home was not local to the hospital.

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  • Hi When I had my first kidney transplant back in 1989 . There was a transplant coordinator talk to me before I left the hospital and talk about an concerns that I had. someone should have told you that there is a transplant coordinator available to talk if you need to. Sounds like that might be a good idea for you to do. There should talk to you and arrange and help you might need. Maybe have an ad come to help you with what you need. Or you could also call an agency to get an ad. If a coordinator would do it for you it might be easer because they would know the right people to call. Good luck with your transplant and hope everything goes well for you. How long have you been on the transplant   list? Hope you will get  the lung soon.

  • http://www.onebreathatatime.net/ Has a place called butterfly house that helps transplants at TGH, This is a group that I contribute to since I got my double lung from TGH 4 yrs ago.

  • I had my 2 daughters and my Sister as caregivers. They all live in other states, I live in So. Calif, The kids flew out to take care of me. It was so necessary for me. We were able to rent a condo in Westwood. We live about 1.5 hours away from UCLA. Ask your Transplant Coordinator. They may have more rental information for you. Good luck and God Bless!
  • My hospital also had a "transplant house" called Twice Blessed.  It made everything so much easier, comfotrable, and manageagle. '

    Keep in mind that you won't be an invalid you are released from the hospital, or they wouldn't be releasing you!  You'll do well. My wifes biggest job was making sure I took my meds and just assisiting on little things.  But, we did still have a kiddo in high school that was 3-hours away that needed attention, so she was pulled in many directions.  Without friends and family it would have been MUCH harder.

    I suggest you arrange for your "handler" (my moniker for my lovely wife) some breaks.  Maybe a family member or friend every other weekend if possible.  That would be a big help for him/her just to have some away time.

  • hi Guido

    I understand your feelings and to have to even think about this idea is quite stressful. Post transplant if all goes well, you can stay on your own after the first month or at least I did.  Every experience is unique and I can say that because both of my transplant experiences were completely different.

    When you leave the hospital, you will be walking without oxygen and will not need a wheel chair. I am not sure how many weeks it is but you can drive after a month or so.  You will need to wear a face mask in public for a few months but after that, your new life will be an awesome experience.

    I know in our minds when we have no clue what to expect, we imagine the most difficult scenario.  

    I will look to see if Tampa has a transplant house.  

    Thanks for writing in!!

    Much love to you and your beautiful wife!

  • I had to have my multivisceral transplant far off in another state, and I had to remain there for several months after my surgery. What helped me was a program offered by the hospital where I had my transplant called Transplant House. It offered hotel-like housing for me and my parents while I was away from home. It was located very close to the hospital itself (within walking distance), and a lot of the people working there had experience with a transplant as well. I also got to meet others who were staying and thus in the midst of the transplant process like me. It was an encouraging and very helpful environment. I do not know if the hospital at which you will have your surgery has a similar program or not, but it might not hurt to investigate in case it does. I hope that you are able to work something out. Best wishes to you!

    Warm regards,

    Bobbiejo 

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