Mayo Clinic Connect
Hi. I am wondering how many people decided to move to be near Mayo permanently for all follow up care after transplant? Thanks!
Liked by @tbirdmunchkin
@caligali, I would like to welcome you to Mayo Connect. Thank you for posting this question. I am sure that it is one very pressing question that many people have struggled with. I will be looking forward to learning what others have to say.
In my own situation, my husband and I were able to ‘live’ at the Gift of Life Transplant House. We were there 11 weeks, and 3 of those were post transplant recovery. I was flown to Mayo, Rochester, from ICU in Kentucky by my local transplant team. We never had the opportunity to discuss it beforehand, but during my time of waiting and hospitalizations in Rochester, we did actually discuss it. My follow up care includes a yearly visit to Rochester. My after care is coordinated between my local PCP and Mayo. I had a liver/kidney transplant. After the transplant, my health needs are fairly simple, so this works well for us. My husband says that if we had to make visits to Rochester more often, then he would want to consider it.
Are you listed, or are you waiting?
Liked by JK, Volunteer Mentor, @tbirdmunchkin
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Thank you for your info! I am still in evaluation in Jacksonville for lung transplant. I have to have a couple of procedures and one little heart surgery before I will be comsidered. Having done next month! Barb
@caligali, Do you live at a distance from Jacksonville? Distance has a lot to do with your decision. There is Transplant housing in Jacksonville for you to consider. Here is the link.
Barb, I had a liver/kidney transplant. So the recovery is different. I suggest you discuss it with your transplant team. They will be able to guide you as to what is best for you.
I would like to bring one of our mentors, @llwortman, into this conversation. She is a patient at the lung transplant Dept. at Mayo Jacksonville. She might have some thoughts on this topic to share with you.
Barb, I am happy to meet you. You are in the best possible level of care at Mayo Clinic. I wish for you to have good results from your procedures. I look forward to walking with you as you proceed on your journey.
Liked by Colleen Young, Connect Director, Terri M., Volunteer Mentor, JK, Volunteer Mentor, @tbirdmunchkin
Again, thank you Rosemary! I am in the final evaluation phase. I will be flying back to Florida next month for a couple of proceedures and one little heart surgery. After that, I will be reconsidered for lung(s) transplant. My husband and I currently live in Southern California. I was listed many years ago at UC San Diego, then the protocol changed and I was taken off the list. I kept in contact with many friends who were subsequently transplanted. As they shared their experiences with me. With the bumps along the way, we wondered if it is best to relocate to be near Mayo. 🙂
Liked by Rosemary, Volunteer Mentor
Hi Rosemarya & Barb:
It is important fir me to clarify that I am a lung cancer survivor, never smoker, who had VATS lung cancer resection of my left lung at Mayo Clinic in Rochester MN.
I did not have lung transplant and I have not received medical care anywhere else but Mayo Clinic Rochester MN.
I do know that Mayo Clinic Jacksonville is a excellent facility. I have met the brilliant Dr. Mathew Thomas who is an excellent Heart Lung Surgeon. He trained under my thorasic surgeon Dr Stephen Cassivi! And
it is the Mayo Team approach that has helped me accept lung cancer and rise above the challenges that can come with any disease or challenge.
Keep a positive attitude. Think about listening g to Dr Amit Sood TED Talk or reading his books that are a key to my
conquering lung cancer and considering
this journey my blessing.
Eat healthy, keep active and push through.
Let’s stay connected ok?
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, @tbirdmunchkin
Thank you for responding too Linda! My family are big fans of Mayo. They saved my husband’s life in Rochester and did great female surgery on me in Arizona. I am a firm believer in the power of a positive attitude! Thank you for the ideas! Wishing you wellness and peace on your pathways. Barb
Liked by Rosemary, Volunteer Mentor, JK, Volunteer Mentor, @tbirdmunchkin
Hi Barb @caligali,
You certainly seem to be on the Mayo Clinic tour. I’m tagging @windwalker on this discussion. She is followed for lung issues at Mayo Clinic FL and monitored for possible lung transplant, and may be able to answer questions you have.
I add my welcome to Connect. Glad you’re here.
@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?
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, tdrell
@caligali Barb, I think there are organizations that will help you with moving expenses. You have to dig hard and long on the internet to find them.
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
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
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 🙂
Liked by Terri M., Volunteer Mentor
@caligali Barb, we liked the Pontre Vedra area. Lots of newer homes and apts, and only 7 minutes from the Mayo.
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