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.

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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@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 am registered as an organ donor and while I'm not in any hurry to leave this planet, it is nice to know that after I'm gone, I will still be able to help someone, either with an organ or as a part of research. Whether you believe in God, fate, timing etc. people die every day whether or not someone is waiting or hoping for an organ.
This didn't sound as pretty typed out as it did in my head. I understand how you are feeling and hear what you are saying, just trying to give you another perspective.

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@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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I get it...there is a special feeling. I too am a donor and have already donated to research via clinical trial. I hope someone can benefit from my efforts.

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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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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!

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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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This is very helpful news..I scheduled an appt. May 21. Where did you end up staying?

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@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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@Mauraaco thank you so much for your reply. At times I have a lot of anxiety due to guilty feelings. Thank you for being honest and for being a donor (much later than sooner). I am working towards acceptance and am leaving it in God's hands as to how it all transpires.

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@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 thank you for your wisdom. I shall remember this and pray that I will be able to thank the family.

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@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 that is very interesting. Thank you for sharing.

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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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Your caregiver is required to be at the psychiatry appt and (I think) the social worker appt. It will tell you on the details of your schedule which ones they are required to attend. We stayed at the Extended Stay on Beach Blvd but cannot recommend it. Yes, it was cheap (a little over $400 for a week but then $60 a day for days less than a week. You do not get daily room service, just once a week, only 1 roll of toilet paper (or buy a roll for $1) Some people live here. Our room smelled like pets (they do allow them), our stove did not work (one of the reason we stayed there). It is only about 10-15 minutes from Mayo tho. We have additional appointments twice more this month and I have made reservations at Holiday Inn Jax Beach on Beach Blvd, about the same distance from Mayo. Our rate per nite there is $116.00, much more than where we are now, but well worth it. That rate is the Mayo patient rate according to the person I talked to at the reservations number. We've tried to get booked at the Gabriel House but no luck.

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@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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As a recipient, I can also register to be an organ donor. You bet I am. My current understanding is that my donated organ do not qualify, n]but my native organs are eligible. With advances in medicine, who can guess what the future will hold!

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