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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!

Interested in more discussions like this? Go to the Transplants Support Group.

beckyjohnson | @beckyjohnson | Jun 4, 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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@jeanne5009 yes she is. I have learned a great from Mayo Connect Transplant participants & her suggested links.

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beckyjohnson | @beckyjohnson | Jun 4, 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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@windwalker OMG extremely interesting. Something akin to stem cell which is marbled with moral & ethical questions. Yet the upside of solutions it brings about is undeniably worth exploration. Thanks for the news. Do you have the link to that info?

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beckyjohnson | @beckyjohnson | Jun 4, 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 Guilt is a relatively common emotion to which I assure you you are not alone. As a hopeful donor I feel guilty I did not act upon my desire 2 yrs. ago when I first came across the need for live kidney donors. Knowing an average 22 people die a day because they cannot get a kidney & I may very well have been the right fit to start a chain that could have saved at least half of a days death toll doesn't help alleviate my guilt either. But faith is I have because I know I can still give even upon my death & that gives me hope.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @rosemarya "@gaylea, Yes, I felt that way, until it was explained to me that someone made the..." + (show)
@rosemarya

@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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@rosemarya I had no idea that my birth month is notable for such a worthy cause. That is awsome.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @mauraacro "Do they do paired donations for livers? I wish I would have known more about paired..." + (show)
@mauraacro

Do they do paired donations for livers? I wish I would have known more about paired dontion before I made my decision (kidney transplant) but only heard briefly about it during evaluation and then more comprehensively after I made a commitment. It seemed too complicated to switch from direct donor to a paired one at that point.

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@mauraacro I'm so glad I've learned about paired donations. To put it not so gracefully it's the most bang for the organ.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 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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@beckyjohnson I will have to retrace my steps or Google it. I poke around and read so many medical journals, some from other countries, that I can barely remember where I see them. I need to be more diligent about saving more of the articles that I find. Will get back to you on this.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 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 My daughter and I are both organ donor listed. I was listed when they first started putting it on driver's license many years ago. Donated organs are gifts and should be accepted as such. No guilt nessessary.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @rosemarya "@mauraacro, I found this statement in the Transplant Pages Toolkit: "Most living liver donors are a..." + (show)
@rosemarya

@mauraacro, I found this statement in the Transplant Pages Toolkit: "Most living liver donors are a family member or friend. Mayo Clinic requires that living liver donors have a relationship with the person receiving part of their liver."
https://connect.mayoclinic.org/page/transplant/tab/resource-36/

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@rosemarya At first I was adamant about knowing the recipient but now I'm content to be open minded to considering all venues.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 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 and @beckyjohnson& @caligali
Here is a link about 3-D organ printing. This is going on right now in our own country. https://www.smithsonianmag.com/innovation/soon-doctor-print-human-organ-on-demand-180954951/

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beckyjohnson | @beckyjohnson | Jun 4, 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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@mauraacro you never cease to amaze me. I understand what you're saying & completely agree with you. There is a certain amount of serenity in knowing that we can improve other peoples quality of life. We are doubly blessed to be able to do this both alive & upon our death. This brings another definition to life after death.

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