Hi. I am wondering how many people decided to move to be near Mayo permanently for all follow up care after transplant? Thanks!
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@caligali Hello Barb, and welcome to our Connect forums. I went through the evaluation process for a double lung transplant back in Dec. of 2016. I am eligible for a transplant, but was put on the 'deferred' list, which means I don't need a transplant right this minute, but will likely need one in the future. It is possible that I may need one suddenly, so they wanted me already approved for it. They DO recommend that you live within 20 minutes of the hospital when you are actually on the waiting list. I personally know people who moved from N.Y. who are not on the waiting list yet, but wanted to get established in the community already. They sold everything and left family. Many others wait to make the move as their health worsens, they usually rent an apt while they wait. Then, you must live within 20 mins of the hospital after the transplant for 3 to 6 months. That is so you can be nearby if rejection starts. I have met many transplantees at a support group there at Mayo; and they all decided to stay put near the Mayo indefinitely. This group shares tight bonds and I think they like living close to others who are going through the same thing. I considered the move, but not ready to do so as of yet. I am slowly getting rid of lots of extra stuff now that is in the garage and our closets. I am doing this in the event we do make the move. We will most likely rent our home out here and rent apt down there. That way, in the event I don't survive, my hubby will have a home to come back to or use as rental income if he wants to stay down there. I may revisit the possibility of moving again. Right now, I am 2 1/2 hrs from the Mayo (S.C.). I live 7 hrs from my daughter right now, and I like that it is do-able for me to drive up there alone once a month to see her. That is one of the reasons I have stayed put so far. If you grow close to needing a transplant, it will be mandatory that you move. Do you know how close you are to needing that procedure?
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Thanks so much! I know about the 20 min and the 3-6 month, etc. requirements. They told me I am "in the window for transplant". Deferred for procedures in Sept and relo. Just getting a feel for what people have been. most comfortable with (perm move or not). Your info definitely helps! Again, Thanks! b
Ohhh good to know!!!
@caligali Please let me know if you make the move. I will come down and have coffee with you if you want. The transplant support group meets every Tuesday at the Mayo Clinic. They are the warmest, honest, most inspirational group. I have scheduled my appts down there on Tuesdays and request that they leave 1:00- 2:30 open so that I can attend their meetings. I was terrified at first about the prospect of a transplant, but I am ok with it now, all in thanks to the support group. It is amazing to see those with long survival rates. It is VERY encouraging. Wishing you the best Barb, Hugs, Terri
That sounds fun to me! Will do! I know about the meeting, hoping to make it the week I am there....my mayo schedule is fluid at the moment 🙂
@caligali Barb, we liked the Pontre Vedra area. Lots of newer homes and apts, and only 7 minutes from the Mayo.
@windwalker, I am so happy that Colleen caught my error in sending to the wrong mentor! I knew that you would have some helpful information to share with @caligali.
Blessings to both of you on your journey.
We like that area as well. I thought it was 7 miles and about 13 minutes. Either way it is within 20 minutes! 🙂
Not an error, Rosemary. @llwortman's info was helpful too. Who doesn't like getting a breath of Linda's inspiration? 🙂
@caligali and @windwalker, I'm so glad you CONNECTed. When you meet in person at the Tuesday transplant support group, I hope you'll tell the others about Connect and how you met. I'll make sure that there are handouts there. Right @keggebraaten?
@caligali Right! We stayed right at the very edge of the P.V. area that is closest to the on ramp to shoot over to the clinic. Not far from that big Catholic church on the A1A. But Yes, P.V. proper is a few minutes further.
Yes! I will make sure they have brochures there. Thanks!
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