What to expect going into a transplant consult?

Posted by vicbh94 @vicbh94, Dec 19, 2023

Hello,

My father is starting the process of being placed on the transplant list. I am one of his caregivers and will be going to a consult with him and my mother, his other caregiver. I would love to know what I need to prepare for before going to the consult. What history of mine will they need if any? Are they just making sure we (mom and myself) know what to expect when he goes through successful transplant? Allowing space for us to ask questions and better understand? I would love any insight you may have. Thank you!

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

I am post pancreas transplant and I have been through 2 pretransplant evaluations for kidney. I think the main thing about requiring caregivers to participate in the pretransplant evaluation is to make sure that someone besides the recipient learns everything the recipient does and will be up to the task of care giving and support after the transplant. Transplant is a really big endeavor. In fact I believe Mayo requires an active caregiver plus a back up caregiver. I thought of a similar principle just today. My husband and I always attend all of each other’s appointments of any kind. We feel that two brains, sets of eyes and ears is better than one. It helps prevent a misunderstanding or something slipping through the cracks. Today at an appointment we joked that together we hopefully make almost 1 good person!

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The consultation gave my husband a chance to ask the questions that he had. It also let him know what to expect and reassures the team that there is someone that is willing to do everything that is required. I had a double lung transplant. So there was a few things that he needed to do. One of the things was just to walk with me.

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Welcome, @vicbh94. I agree with the helpful tips from @chickytina and @cehunt57. You might also appreciate this information from the transplant team at Mayo Clinic:
- Getting Listed for Transplant https://connect.mayoclinic.org/blog/transplant/newsfeed-post/getting-listed-for-transplant/

In this video, 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/event/facebook-live-what-to-expect-when-youre-expecting-a-liver-transplant/

Also see tips from other transplant caregivers in this discussion:
- Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

What type of transplant will your father be getting? I'm glad that your mom has you to support her as well as your father. 🙂

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Hi
I had a liver transplant about five years ago and still breathing.
In my instance, it was more of a presentation session as they met with other people who had liver-related issues.
They walk through every step of the procedure the hospital uses to help patients get transplanted.
It is important to realize that there are certain requirements to be placed on a transplant list.
All of these will be thoroughly explained throughout the meeting. Kindly pay close attention to what they say, then decide how to proceed. After you are approved for treatment, a Coordinating Nurse will be assigned to serve as your point of contact. They are a pleasure to work with and well-educated.
The hospital will often locate a liver for you, assuming all conditions are normal.
Everything will depend on the patient's condition.
There are two methods for obtaining the liver. Either from a living individual who is eager to assist or from a deceased someone who has donated one.
Mine was a transplant from a live donor.
Make sure you have adequate insurance to cover these kinds of procedures. In my instance, it came to close to a million dollars for both my donor and me. Unsettling, but true.
It is a really sad thing to have to endure, but since liver damage cannot be repaired, the only choice is a transplant.
The duration of the process may vary between nine and twelve months, contingent upon the patient's condition.
Please keep your hopes very high and be positive.
God helped me and he will help you too.

All the best

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Hi, @vicbh94, I hope that you have have taken the opportunity to read the helpful responses that have already been shares about preparing for the transplant consult. My additional suggestion is to take a notebook and pen to take notes throughout the visit.

I received my transplant (a liver and a kidney) in 2009 at Mayo Clinic in Rochester MN. What organ will your dad need?
Do you have a specific question or concern that you would like to ask here?

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@jamesduaiswamy

Hi
I had a liver transplant about five years ago and still breathing.
In my instance, it was more of a presentation session as they met with other people who had liver-related issues.
They walk through every step of the procedure the hospital uses to help patients get transplanted.
It is important to realize that there are certain requirements to be placed on a transplant list.
All of these will be thoroughly explained throughout the meeting. Kindly pay close attention to what they say, then decide how to proceed. After you are approved for treatment, a Coordinating Nurse will be assigned to serve as your point of contact. They are a pleasure to work with and well-educated.
The hospital will often locate a liver for you, assuming all conditions are normal.
Everything will depend on the patient's condition.
There are two methods for obtaining the liver. Either from a living individual who is eager to assist or from a deceased someone who has donated one.
Mine was a transplant from a live donor.
Make sure you have adequate insurance to cover these kinds of procedures. In my instance, it came to close to a million dollars for both my donor and me. Unsettling, but true.
It is a really sad thing to have to endure, but since liver damage cannot be repaired, the only choice is a transplant.
The duration of the process may vary between nine and twelve months, contingent upon the patient's condition.
Please keep your hopes very high and be positive.
God helped me and he will help you too.

All the best

Jump to this post

Did your insurance cover it? Part of it? How did that process happen? Thanks for your thought!

REPLY

Hello
My deductible is the only thing that the insurance company doesn't cover.
During my yearly physical, my primary care physician informed me that my white blood cell count was low and recommended that I visit the emergency room to get it checked out.
The hospital kept me for four days for additional testing.
They told me that my liver was damaged on the fourth day. A transplant is your only option.
I realized at this time that I was pretty much done, so I started completing all the paperwork related to my living trust, power of attorney, and other documents.
A person with a poor liver might expect to live for only 12 to 15 months. In this period, you will
observe the jaundiced face and the buildup of fluid within the body.
The fluid must be removed, which requires a trip to the hospital every three weeks or so.
It's not a nice sight, to be honest. The fluid accumulation could be nasty to look at.
After many talks and doing all the hospital asked of me, they were able to locate a liver from a living donor.
Since I only had three or four months left, I was in shock.
A remarkable young woman from Pennsylvania, who formerly resided near Charlottesville, VA, gave her liver to save another person.
It was initially anonymous, and the hospital scheduled a meeting three months following the procedure.
I was on the verge of passing out when I spotted the person.
She was a very young woman, only twenty-three, who helped me so that I could breathe.
It's similar to winning the lotto. She has my undying gratitude for the rest of my life. She follows me everywhere I go because I carry her liver within me.
Caveat. The process after the transplant surgery is quite arduous. A complete 360-degree change in lifestyle. Take about 15 of the Medics every 12 hours, exercise, and maintain your health.
Keep an eye on what you eat, avoid crowds, and wash your hands frequently. As the liver may reject them, the medics take away the body's immunological capability.
That's the narrative in a nutshell. I am still around and live only for today because tomorrow may never come.

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@jamesduaiswamy

Hi
I had a liver transplant about five years ago and still breathing.
In my instance, it was more of a presentation session as they met with other people who had liver-related issues.
They walk through every step of the procedure the hospital uses to help patients get transplanted.
It is important to realize that there are certain requirements to be placed on a transplant list.
All of these will be thoroughly explained throughout the meeting. Kindly pay close attention to what they say, then decide how to proceed. After you are approved for treatment, a Coordinating Nurse will be assigned to serve as your point of contact. They are a pleasure to work with and well-educated.
The hospital will often locate a liver for you, assuming all conditions are normal.
Everything will depend on the patient's condition.
There are two methods for obtaining the liver. Either from a living individual who is eager to assist or from a deceased someone who has donated one.
Mine was a transplant from a live donor.
Make sure you have adequate insurance to cover these kinds of procedures. In my instance, it came to close to a million dollars for both my donor and me. Unsettling, but true.
It is a really sad thing to have to endure, but since liver damage cannot be repaired, the only choice is a transplant.
The duration of the process may vary between nine and twelve months, contingent upon the patient's condition.
Please keep your hopes very high and be positive.
God helped me and he will help you too.

All the best

Jump to this post

Hi. I just joined. I am 33 years post cadaver liver transplant. Emergency transplant overnight when I was 27. I have issues but one yr of recuperation gave me chance to marry, travel , and have a successful career. I am now 60 and have NASH, taking tacrolimus. Is there anyone decade's post transplant?

REPLY
@jamesduaiswamy

Hi
I had a liver transplant about five years ago and still breathing.
In my instance, it was more of a presentation session as they met with other people who had liver-related issues.
They walk through every step of the procedure the hospital uses to help patients get transplanted.
It is important to realize that there are certain requirements to be placed on a transplant list.
All of these will be thoroughly explained throughout the meeting. Kindly pay close attention to what they say, then decide how to proceed. After you are approved for treatment, a Coordinating Nurse will be assigned to serve as your point of contact. They are a pleasure to work with and well-educated.
The hospital will often locate a liver for you, assuming all conditions are normal.
Everything will depend on the patient's condition.
There are two methods for obtaining the liver. Either from a living individual who is eager to assist or from a deceased someone who has donated one.
Mine was a transplant from a live donor.
Make sure you have adequate insurance to cover these kinds of procedures. In my instance, it came to close to a million dollars for both my donor and me. Unsettling, but true.
It is a really sad thing to have to endure, but since liver damage cannot be repaired, the only choice is a transplant.
The duration of the process may vary between nine and twelve months, contingent upon the patient's condition.
Please keep your hopes very high and be positive.
God helped me and he will help you too.

All the best

Jump to this post

@jamesduaiswamy
My wife is in need of a liver transplant more than likely this coming summer. We have had our consult and done all the tests. She has one more PRRT treatment for NET, then we wait 90 days, for the radioactive material to clear her body, and she will be on list. My question or concern is our transplant team doesn’t do live transplants, only donated livers. The more I research it appears the live donor livers have less issues after transplant. I see your was a live liver donation, was the recovery any easier than what was told during the consult? Any and all info you can share is most appreciated.🙏

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