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Transplant Evaluation - What to expect

Transplants | Last Active: Nov 28, 2020 | Replies (306)

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@bamagirlgina

@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3 weeks. I did contact Gabriel House today and right now the have availability...hopefully they will still tomorrow once I call about the appt. Trying to get an appt date at Mayo and Gabriel House in tandum is tricky. We considered taking our travel trailer over but the closest campground was at least 30 minutes drive away. Since Gabriel House has shuttle service that would be one less stressor to have to worry about (not to mention dragging the camper over, setting it up, etc.) Fingers crossed Mayo still has April 11 open when I call in the morning and that after that Gabriel House still has availability.

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Replies to "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..."

@bamagirlgina I understand the not wanting to drive! Mayo has a shuttle that stops at GOL, but we normally choose to walk back and forth when the weather permits. It's nice to get the fresh air after spending all day at the clinic. I hope you can get it all coordinated. I know that if GOL is full that they work with hotels in the area to get discounts for patients. So maybe ask about that if needed. I think most of the hotels in Rochester give some type of a Mayo discount also.
JoDee

@bamagirlgina, I have been thinking about you. I hope that your plans came together for the appointment and Gabriel House.

In Rochester, in order to stay at Gift of Life House, you are required to take a tour, and learn about the restrictions and requirements as a resident. Also rooms are not reserved due to the uncertainty of length of stay. But you can be put on a call list when one is available. I don't know how the Gabriel House at Jacksonville Mayo operates, but I assume it is pretty much the same way.
Do you need this? http://www.gabrielhouseofcare.org/

Rosemary

@rosemarya , We have an appointment beginning on April 3rd at Mayo Jax. I contacted Gabriel House. We do not have to tour, etc. but they only use a "wait" list for reservations. She wanted to know for how long and, of course, I could not answer since Mayo said to expect to say up to 3 weeks, which is what I told her. She said they would notify use the day before whether or not we have a room; therefore, we will need to make other arrangements in the event we don' have a room....I know it's policy, but it just adds one more stressor to our already stressed out lives. I've decided not to attempt to take our camper because that will be one more issue to have to deal with in finding a place, set up, break down, etc not to mention driving it over and back or finding a place to store it in Jax. Guess we will be making hotel reservations and hope we get a call from Gabriel House the day prior which of course means we will probably have to pay for the hotel room anyway since you have to cancel prior to 24 hours usually. I do plan to call our insurance Co today because it appears we can get reimbursed up to $5,000 for travel/lodging related to transplant appointments but no sure until I talk to them.

@bamagirlgina That is awesome!! You are slowly breaking down the barriers along the way. You can cancel the motel if a room comes available at Gabriel House. We had that happen once when on our way to Rochester. One great benefit of staying at the Transplant lodging, in additional to the physical environment, is the other people that you both will have the opportunity to meet who are stressing and waiting just like you. Most important is the confidence and strength from people who have already been thru what you are feeling because they are the inspiration to propel both of you forward.
I am looking forward to hear about Jacksonville and the Gabriel House.
Rosemary

@bamagirlgina we will be at Mayo in Rochester for my husband's 3 month update starting April 10. You'll be overwhelmed yet amazed by everything. I wish you the best of luck and please keep us updated! JoDee

I too will be scheduling at Mayo Jax for an evaluation in the near future. Trying to orchestrate getting my daughter there for part of it at least. Please let me know how you make out..Ill be following your path
Good Luck

Hi @jeanne5009, how fortunate that you will have @bamagirlgina's evaluation experience at Mayo Jax to follow. @v1crew and @windwalker may also be able to answer any questions you might have.

You might also want to watch this video Q&A where Michael Womack, LCSW, a social worker at Mayo Clinic in Florida, talks about what to expect at your first evaluation for a liver transplant.
- Video Q&A about What to expect when you're expecting a liver transplant https://connect.mayoclinic.org/webinar/facebook-live-what-to-expect-when-youre-expecting-a-liver-transplant/

The video is specific to liver transplant, but much of the information is similar for all transplants. What type of transplant are you preparing for?

@jeanne5009, I echo what Colleen said. I am a liver/kidney recipient. And I welcome you to take a look at any of our transplant discussions and I want you to know that you are invited to join in anywhere. Feel free to ask questions about the transplant process from any of our members.
My transplant was at Mayo Rochester, but I am here if there is anything that I might help you with.
Rosemary

Watched the video. Question on caregivers?? Do they have to be there the whole evaluation time? My daughter is currently out of state and my two local caregivers are sharing time. Need to coordinate all of them so Im covered...suggestions?

We have been here a little over a week now. From the time we drove up to the doors, the staff (ALL of them!) have been nothing less than spectacular! The clinicians never seem in a hurry, always eager to hear any questions you have. The educational classes and materials are great. (I especially love the pharmacist who taught our class--and appreciated a little uplifting sense of humor from her). Most appointments were on time. We only had one we had to wait on and they did come out and apologize for the wait. I can say it is a very fully packed schedule and very tiring for both the patient and caregiver. Also, expect to have changes made to your schedule. We have some things taken off (colonoscopy and EGD since he had recent ones, thanks goodness!!!). But based on outcome of some tests/exams, we had additional appointments added (like we had a nutritional assessment added due to his muscle wasting/weight loss). Some of the appointments may be scheduled while you are there but some will require a return visit based on the scheduling. (All departments pretty much stay booked up....a good sign that people come if, if you ask me). We tried to reschedule a couple but were unable to do so since nothing was available but be sure to ask anyway in case there is a cancellation. Parking is a bit far away, but there is valet parking for $6.00 if you choose. I chose to walk since I needed the exercise but dropped hubs off at the door. There are plenty of staff at the door to assist and will get you a wheelchair, if needed. While we speak only English, I was impressed with seeing several non-english speaking patients who were provided interpreters from Mayo who walked with them to their appts and was their liaison between patient/staff. We are very happy with our choice of May Jax thus far!