1. < Transplants

Transplant Evaluation - What to expect

Posted by bamagirlgina @bamagirlgina, Mar 12, 2018

We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @kequick "Hi @bamagirlgina - great info shared by @jodeej and @rosemarya! Mayo's goal is to complete a..." + (show)
@kequick

Hi @bamagirlgina - great info shared by @jodeej and @rosemarya! Mayo's goal is to complete a thorough evaluation in the shortest time. While our transplant staff tells patients to be prepared for up to three weeks of appointments, sometimes everything is completed in one week. Most patients are complete within two weeks, but some patients will require some time in the third week to complete the process. The required testing is specifically determined for each patient based on his/her condition – there’s not a “one size fits all” approach to liver evaluation. Once your medical records are reviewed, your initial itinerary will give you some indication of how long your process may take, but some of tests may be moved, cancelled, and/or others added once your husband begins the process. Hope that helps!

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@kequick Short sweet & to the point. I loved the way you broke it down with reason. Thank you for sharing.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @jodeej "@kequick and @bamagirlgina with our first appointment we had trouble getting the appointment with the dietitian...." + (show)
@jodeej

@kequick and @bamagirlgina with our first appointment we had trouble getting the appointment with the dietitian. We ended up having it when we came back for Tim's 3 month check. They had it scheduled for 4 or 5 weeks after our first appointments because that was the earliest they had an opening. After I explained how far we had to travel and that we both worked, they changed it for us.

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@jodeej You are soooo good with communicating on so many levels that it is refreshing to read knowing the results of your gift gets things done

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @ktb77799 "I live in the town where the transplant (lung) will take place. Can I just stay..." + (show)
@ktb77799

I live in the town where the transplant (lung) will take place. Can I just stay at home during the evaluation phase?

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The simplist questions add up to be collectively the most important. At times posting seems silly but we still do it hoping that one other person just might benefit from our courage. This is why I like all posts except for hateful ones which there are none in any of the Transplant discussions that I have found.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@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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@rosemarya You are so right that our journeys serve as a testimony to give strength & inspiration to others like me who have no ulterior motive what so ever. Thank you for your thoughts.

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mauraacro | @mauraacro | Jun 4, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@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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@beckyjohnson I could be reading this the wrong way so correct me if I am.
If you are thinking you may not have time to donate over the summer while looking at the posts that say evaluations take up to 3 weeks and a caregiver needs to be present for some of the evaluation, don't lose hope. These are the recipients experiences.
For me, as a donor, my evaluation took 2 full days (outpatient) but they asked that I stay an additional day just in case they needed more info. I didn't need a caregiver with me. After that, it took about a week for my results to be presented to and approved by the donor board and about an hour to get a call back to schedule the surgery. This was right before Christmas so we opted to wait 3 weeks but could have gotten in the next week. I was in the hospital overnight, stayed in town for week (did not want to sit on a plane for 5 hours right away!) and back to a full schedule with no limitations after a month from the surgery date.
Sorry about the thread jacking!

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@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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@jeanne5009 I too had planned on having my daughter as a caregiver. I also thought I would handle all the testing that didn't require anesthesia on my own then enlist her aid for the major event of transplant & aftercare. Is this not possible @rosemarya?

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jodeej | @jodeej | Jun 4, 2018
In reply to @jodeej "@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe..." + (show)
@jodeej

@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe he had 23 appointments that week! It was very tiring. They draw blood, do renal testing, CT scans, MRI, EKG's, lung function..you name it, they test it. They have to be sure you are able to handle the surgery and that you don't have anything else going on. They don't want any surprises. We were able to stay at the Gift of Life house in Rochester while he was being tested. It helps save on lodging, plus we are able to cook our own meals and not have to eat out all the time. Another plus of staying there are all the other people that understand exactly what you are going though.
I wish you the best of luck!
JoDee

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@beckyjohnson thank you. That is very sweet of you to say. 🙂

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jodeej | @jodeej | Jun 4, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@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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@beckyjohnson no I don't, but I would assume that all the Mayo's are similar.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@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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@mauraacro Thank you for that. Your understanding was absolutely correct. What a relief to understand the difference. By all means thread jack my posts anytime. I clearly needed the reality check to keep my hopes high

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @cehunt57 "@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo..." + (show)
@cehunt57

@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo Rochester. I was there for kidney pancreas pre transplant evaluation in 2016. It was an impressive, thorough and fantastic experience that lasted a week. In 2017 I returned for a review that lasted 3 days. Both times I stayed in a hotel and used shuttle service for transportation. I did tour the Gift of Life House in Rochester. I thought it was more for current transplant patients and didn't realize it applies to pretransplant patients as well. In Rochester most hotels have shuttle service to Mayo and Mayo patient discounts. My insurance has a lodging and mileage reimbursement. It is good you have looked into that with your insurance. One of the most helpful things I found was the Mayo Portal. It is a patient online system. I'm not very tech savvy but my husband helped me with this. It was useful to keep track of any changes in the itinerary, lab & test results and appointment provider summaries. Mayo Rochester also has a concierge service and information desks where there is information about everything and staff who are willing to help with anything. Mayo-Jax probably has similar features.

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@cehunt57 Do you know if these opportunities are for recipients & donors?

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