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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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 8, 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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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?

REPLY
gaylea1 | @gaylea1 | Apr 8, 2018

@rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much about this. I feel guilty knowing someone has passed to obtain a liver. There have been a few close matches but they have never been quite right for me. I wonder if others feel this way about receiving a liver transplant?

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16 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 2018

@gaylea, Yes, I felt that way, until it was explained to me that someone made the choice to be an donor when he/she died.and longer needed those organs.. The comforting words for me were that "it was a choice, and act of ultimate love of one human being for another".

Did you know that April is National Donate Life Month? It is a whole month dedicated to celebrating Life through organ donation. It is a month when education and promotion of the National Organ Donor registry is emphasized. It is a month where people are encouraged to make that powerful decision.
https://connect.mayoclinic.org/newsfeed-post/celebrate-donate-life-month/
You will have the opportunity to write a letter to the donor family at a reasonable time after your transplant. Your transplant team will talk to you about it at the appropriate time.. When that opportunity arises, I encourage you, and all transplant recipients to do it.

Rosemary

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 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 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

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 8, 2018
In reply to @gaylea1 "@Rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much..." + (show)
@gaylea1

@rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much about this. I feel guilty knowing someone has passed to obtain a liver. There have been a few close matches but they have never been quite right for me. I wonder if others feel this way about receiving a liver transplant?

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@gaylea1 I just read an article where a research institute in South Korea is perfecting 'organ printing' using a computer printer and build new organs using your own tissue. This will prevent organ rejection. The article said that they are having success with liver reproduction as it is the most regenerative able of all organs. They hope to be able to replicate other organs in the future. Right now, they are only using these regenerated livers to perform medical trials with. Interesting, eh?

REPLY
jeanne5009 | @jeanne5009 | Apr 8, 2018
In reply to @gaylea1 "@Rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much..." + (show)
@gaylea1

@rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much about this. I feel guilty knowing someone has passed to obtain a liver. There have been a few close matches but they have never been quite right for me. I wonder if others feel this way about receiving a liver transplant?

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A glimmer of hope is all we need....hurry....

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jeanne5009 | @jeanne5009 | Apr 8, 2018
In reply to @rosemarya "@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009, I want to share this information in case you might be..." + (show)
@rosemarya

@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009,
I want to share this information in case you might be interested, or maybe didn't see it. On Tue, Apr 24, there is a Video Q&A and Behind-the-Scenes: Liver Transplant. It will be showing the procurement process for a liver transplant. If you are not a liver patient, I inquired, and the process at Mayo Clinic's campus in Jacksonville, FL, is essentially the same for all organs.

If interested, you can scroll thru the list of Transplant discussions to find it, or here is the direct link where you can register and ask questions that will be answered during the presentation. https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

Sending my thoughts and hoping that you are making forward progress.
Rosemary

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Thanks you are the Library of Congress in this maze...

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 8, 2018
In reply to @rosemarya "@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009, I want to share this information in case you might be..." + (show)
@rosemarya

@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009,
I want to share this information in case you might be interested, or maybe didn't see it. On Tue, Apr 24, there is a Video Q&A and Behind-the-Scenes: Liver Transplant. It will be showing the procurement process for a liver transplant. If you are not a liver patient, I inquired, and the process at Mayo Clinic's campus in Jacksonville, FL, is essentially the same for all organs.

If interested, you can scroll thru the list of Transplant discussions to find it, or here is the direct link where you can register and ask questions that will be answered during the presentation. https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

Sending my thoughts and hoping that you are making forward progress.
Rosemary

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@rosemarya Thank you, Rosemary, that is good info. That video sounds like it would be interesting.

REPLY
jeanne5009 | @jeanne5009 | Apr 8, 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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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?

REPLY
jeanne5009 | @jeanne5009 | Apr 8, 2018
In reply to @rosemarya "@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009, I want to share this information in case you might be..." + (show)
@rosemarya

@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009,
I want to share this information in case you might be interested, or maybe didn't see it. On Tue, Apr 24, there is a Video Q&A and Behind-the-Scenes: Liver Transplant. It will be showing the procurement process for a liver transplant. If you are not a liver patient, I inquired, and the process at Mayo Clinic's campus in Jacksonville, FL, is essentially the same for all organs.

If interested, you can scroll thru the list of Transplant discussions to find it, or here is the direct link where you can register and ask questions that will be answered during the presentation. https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

Sending my thoughts and hoping that you are making forward progress.
Rosemary

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Thanks got it for me and caregivers....stand by lol

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