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!

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Hi

Assuming your MELD SCORES are within the range, you will be included on the waiting list.
It has been nearly five years since I was fortunate enough to receive a transplant from a living donor.
My research indicates that a transplant from a living donor is preferable to one from a deceased donor. That does imply that it is the sole choice. In my situation, I would have chosen any of them.
The surgeon may have informed you that the recuperation procedure could be a process in itself. This requires a different perspective on one's life. Medication administered at precise times, diets, exercise routines, and the inability to be in crowded areas due to immune system deficiencies.
Simply follow the plan. It would take about a month for the liver to regrow to its normal size, assuming it was a living donor transplant, If not please check with your doctor. Meanwhile no lifting over 10 lbs. Complete recovery in around six months.
If you follow the plan that your transplant team has created, you should be just fine. 100 percent alcohol-free. Please be informed you may be limited in certain types of activities such as lifting heavy weights and doing 100-meter sprints etc.
From my perspective, the transplant will change your life for the better.

May God Bless you for a speedy recovery

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@amyd719

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

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Hi @amyd719, are you being considered for transplant?

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@beracha

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?

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Hi @beracha, we have quite a few members who are more than a decade post transplant. 33 years puts you among the veteran transplant recipients. @rosemarya I think is going on year 12.

Beracha, I invite your to tell more of your story in this discussion and meet others:
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

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Hello

Some information :

The patient is the only one who can influence the healing process.
It could be a live donor or any other kind.
The post-operative recuperation period is a fairly strict process, requiring strict adherence to the hospital's prescribed schedule. No detours or shortcuts.
The hospital will be informed by the monthly blood work about any necessary medication or another adjustment.
Sorting through the drugs takes time; in my instance, I take 11 tablets in the morning and 5 in the evening at 12-hour intervals. This is a lifelong thing.
Please check with your insurance company for prices for Transplant Medics. They are expensive.
Also, please compare that with Good RX. I recently found out, that if the patient is under Medicare, Part B covers all the transplant medication with a very minimal or no charge option.
If that is the case please ensure you do have Medicare Part A & B with a Medigap plan and prescription plan.
Please avoid Medicare Advantage plans which are private. (It is a rip-off- the algorithms are designed to reject your claims.)
At first, it could seem like a curse, but eventually, one gets used to it.
It will be difficult, but I do not doubt that you will get through this gradually.
Just take one day at a time.

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@jamesduaiswamy

Hello

Some information :

The patient is the only one who can influence the healing process.
It could be a live donor or any other kind.
The post-operative recuperation period is a fairly strict process, requiring strict adherence to the hospital's prescribed schedule. No detours or shortcuts.
The hospital will be informed by the monthly blood work about any necessary medication or another adjustment.
Sorting through the drugs takes time; in my instance, I take 11 tablets in the morning and 5 in the evening at 12-hour intervals. This is a lifelong thing.
Please check with your insurance company for prices for Transplant Medics. They are expensive.
Also, please compare that with Good RX. I recently found out, that if the patient is under Medicare, Part B covers all the transplant medication with a very minimal or no charge option.
If that is the case please ensure you do have Medicare Part A & B with a Medigap plan and prescription plan.
Please avoid Medicare Advantage plans which are private. (It is a rip-off- the algorithms are designed to reject your claims.)
At first, it could seem like a curse, but eventually, one gets used to it.
It will be difficult, but I do not doubt that you will get through this gradually.
Just take one day at a time.

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I had a Medicare Advantage plan last year. They covered the medications that I take for the most part. There are some they don't cover, because there are alternatives that you can buy over the counter. I take 18 1/2 pills for breakfast, 6 in the afternoon, and 14 at night (this is down from the original amount). Then on top of that additional when needed (right now getting over having COVID, so that was an additional 16 pills). Only one of these pills did I need to take prior to transplant. On top of that, I need to take my blood sugar 4x a day due to the medication raising blood sugars.
The reason why I switched over to Medicare with a Medigap plan with a prescription plan is because the hospital I go to was in negotiations with the insurance company and I didn't want to have to worry about which doctor accepted which insurance. Every doctor that accepts Medicare accepts Medicare with Medigap. However, the Medigap plan is over $450/month and almost $80 for the prescription plan. This is what made sense for me this year, but it may not be the same for everyone.
Also, when I first started my transplant journey, I didn't have Medicare. I had private insurance. On top of that some people due to financial circumstances are dual eligible (have Medicaid and Medicare).
So as far as insurance goes I would recommend that you speak with an insurance broker. You don't pay them. They are paid through the insurance companies. Also, you can look on your market place network or the Medicare site to see what they have to offer based on your income and usage if you know approximately the doctors that you will be using.

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I hope your process is going well. I am three and a half years post transplant and I am grateful for every day. Be prepared for emotional ups and downs while you are waiting for your transplant. For me when I got the phone call that they had a liver for me it was a combination of excitement and fear as we drove to the hospital. Follow the post transplant instructions your get from your care team and don't be afraid to call them if you have any questions or need some reassurance about anything that is going on. My recovery when really well and I was back driving truck at 10 weeks which amazed my doctors but they said they saw no reason I couldn't. I was surprised because I was expecting to be out 5 to 6 months. I have had a few bumps along the road but I will happily take because that means I'm still around to practice my new hobby of spoiling Grandchildren, 3 of which have been born since my transplant which I consider the biggest blessing of all.

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@rickherman

I hope your process is going well. I am three and a half years post transplant and I am grateful for every day. Be prepared for emotional ups and downs while you are waiting for your transplant. For me when I got the phone call that they had a liver for me it was a combination of excitement and fear as we drove to the hospital. Follow the post transplant instructions your get from your care team and don't be afraid to call them if you have any questions or need some reassurance about anything that is going on. My recovery when really well and I was back driving truck at 10 weeks which amazed my doctors but they said they saw no reason I couldn't. I was surprised because I was expecting to be out 5 to 6 months. I have had a few bumps along the road but I will happily take because that means I'm still around to practice my new hobby of spoiling Grandchildren, 3 of which have been born since my transplant which I consider the biggest blessing of all.

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Your story is encouraging and inspiring!
Thank you for sharing this.
I am 16 years post transplant having received a liver and kidney in 2008:)
Like you, everyday I wake up with gratitude and hope. To live life this way is in and of itself, THE BIGGEST BLESSING of all. God is amazing.

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@jeanne1959

Your story is encouraging and inspiring!
Thank you for sharing this.
I am 16 years post transplant having received a liver and kidney in 2008:)
Like you, everyday I wake up with gratitude and hope. To live life this way is in and of itself, THE BIGGEST BLESSING of all. God is amazing.

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@jeanne1959, Hi and Welcome to Connect! I am so happy to read your post because it is a great beginning to this new year-2024. I could literally repeat everything that you wrote word-for-word, except I would need to insert 2009 instead of 2008. I also was blessed with a liver and kidney transplant (in 2009) ! It was performed at Mayo MN as a simultaneous liver kidney transplant (1 surgery, 1 donor, 2 organs) Is that what you had?

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@rosemarya

@jeanne1959, Hi and Welcome to Connect! I am so happy to read your post because it is a great beginning to this new year-2024. I could literally repeat everything that you wrote word-for-word, except I would need to insert 2009 instead of 2008. I also was blessed with a liver and kidney transplant (in 2009) ! It was performed at Mayo MN as a simultaneous liver kidney transplant (1 surgery, 1 donor, 2 organs) Is that what you had?

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Yes!!! Good morning!
Same: 1 donor, 2 organs.
I am so glad you wrote back. It is wonderful to know you are out there:)

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@jeanne1959

Yes!!! Good morning!
Same: 1 donor, 2 organs.
I am so glad you wrote back. It is wonderful to know you are out there:)

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I began my journey toward liver failure and eventual kidney failure with a diagnosis of with Primary Sclerosing Cholangitis (PSC). This possibility never entered my mind when I was going thru my initial evaluation. * For anyone who is beginning their evaluation - Note that your transplant team will guide you thru every step of your own journey. *

@jeanne1959 - How about you? Why did you need both?

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