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bamagirlgina
@bamagirlgina

Posts: 18
Joined: Mar 02, 2018

Transplant Evaluation - What to expect

Posted by @bamagirlgina, Mon, Mar 12 6:57pm

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!

REPLY

@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

@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.

@bamagirlgina, In addition to @jodeej 's actual description, I want to share this link to Mayo's test/procedure information. You will find a section for Evaluation if scroll down the page.
https://www.mayoclinic.org/tests-procedures/liver-transplant/about/pac-20384842

Rosemary

@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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@jodeej, Thank you for sharing your personal experience with the evaluation process. I had my evaluation started as an inpatient and continued as an outpatient, so I really enjoy hearing your experience.
Rosemary

Liked by beckyjohnson

@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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@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

@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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@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

Liked by beckyjohnson

@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 , 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.

Liked by jodeej, beckyjohnson

@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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@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

@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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@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

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!

@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.

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

Liked by beckyjohnson

@ktb77799, I noticed that you are a new member on Mayo Connect, and I want to extend my sincere, "Welcome", to you.

Are you currently a patient somewhere? If so this is a great question to discuss with them. Even if you are not a patirnt yet, I think that this is an excellent question for them to sort. I was originally evaluated at a transplant center that was 45 min from my home, and the evaluation tests were clustered over several days over a 2 week period. It was easy for us to go back and forth during on those days.

I also want to call in one of out mentors, @windwalker . Terri, do you have any thoughts about the question that ktb77799 has posted about living at home during evaluation for lung transplant?

I wish for you to receive the best possible outcome. We are always here for you. I invite you to join in any of our transplant discussions at any time.
Rosemary

Liked by beckyjohnson

@rosemarya

@ktb77799, I noticed that you are a new member on Mayo Connect, and I want to extend my sincere, "Welcome", to you.

Are you currently a patient somewhere? If so this is a great question to discuss with them. Even if you are not a patirnt yet, I think that this is an excellent question for them to sort. I was originally evaluated at a transplant center that was 45 min from my home, and the evaluation tests were clustered over several days over a 2 week period. It was easy for us to go back and forth during on those days.

I also want to call in one of out mentors, @windwalker . Terri, do you have any thoughts about the question that ktb77799 has posted about living at home during evaluation for lung transplant?

I wish for you to receive the best possible outcome. We are always here for you. I invite you to join in any of our transplant discussions at any time.
Rosemary

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Thank you for welcoming me. I have been a patient at the VA in St. Louis for about the last four years.  Before that I was still working and seeing a private practice pulmunary specialist.  I've been using Symbicort and Spiriva
for about six years.  The pumunary doctor at the VA is the one who recommended a transplant. My records were sent to Barnes Hospital this past Friday so I'm waiting to hear from them to see how it will go.

@ktb77799, I feel pretty certain that this is a scary time and also an exciting time for you. It was for me.
(To avoid confusion, if you ever come across any of my story, I was evaluated twice: for my liver locally, and then for liver and kidney at Mayo).

After my local GI sent my records to my regional/local transplant department, I was scheduled for a consult that lasted most of the day. This included labs, social worker, finance, nutritionist, transplant nurse, doctor exam, Q&A with doctor. Then I had to be accepted by the transplant dept for evaluation before being listed. My pre transplant evaluation was on 2 separate days that were scheduled a week apart. This is just my experience, and I don't know what happens elsewhere. Every situation can be different, as each person is different, even with the same disease. I think you will have lots of opportunity to ask questions and to get answers before and during the process.
I am not experienced with lung transplant, but I will always welcome any questions and I will do mu best to help you find answers and resources,

I want to share these 2 discussions by lung transplant patients. I invite you to read them and although they have been inactive, I encourage you to join anywhere you want.
https://connect.mayoclinic.org/discussion/hello-what-are-the-bmi-restrictions-ay-the-mayo-clinic-for-a-lung-tran/
https://connect.mayoclinic.org/discussion/how-many-of-you-decided-to-move-permanently-to-be-near-mayo/

I look forward to hearing from you.
Rosemary

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