Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

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

@gerryp

I was transplanted at Mayo Jax about 1 year ago. The place is amazing. I relocated from Boston as my odds for transplant were much better here. The facilities here are relatively new (about 25 years) and immaculate. The campus is beautiful, with gardens, art installations, fountains - it embodies the Mayo philosophy of healing the “whole patient”. All patient rooms are single rooms and state of the art. I am so grateful to the care I received that I now volunteer on the Transplant floor each Wednesday as a nurse’s aide.
But my wait was complicated. I was treated at Mass General for over a year before being advised to seek treatment here in Jax. It took me just about 2 years from diagnosis to transplant - but my condition was very rare, so there were no statistics or protocol at UNOS for prioritizing patients with my condition. There are lots of local housing options here, and I found that my health improved while I waited simply by being in the FL sunshine. I would encourage you to join the weekly support group calls (each Tues at 11am via Zoom). You will meet many post & pre patients who have been down this road and can help allay your fears and answer any questions you might have about their experiences and treatment for similar condition as yours. Many patients get listed and receive the call not long after. That was not my experience. Between Mass Gen and Mayo I received 7 calls. They come any time of the day or night, so keep your phone with you and answer every unknown caller. My 7th call came at 1am on a Sunday night - and the 7th was the charm. Happy to speak privately with you or meet you and your caregiver when you arrive in Jax. We have a very large and supportive community here - so you won’t be alone.

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Great. I’m glad you had a good experience and now volunteering. I’ll be there April 17-21. I have Y90 mapping on Monday and Ablation on Tuesday. We will be staying at Hope lodge. They had all but one night on the 18th. Hopefully that it will become available that night also. We would love to meet you.

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@rosemarya

@rshangle, Welcome to Connect. I just finished reading your earlier post, and I want to reach out and to let you know that your medical complications are a reality for many members who have liver conditions. I want to commend you for the powerful message of strength and determination that you exhibited by your words, "Transplant is not ruled out. I just work the plan as the doc said, as others have said here." You are among friends, and we do 'get it' because anyone we are/or have experienced the same ugly symptoms.

I never had encephalopathy. but I know from the experiences that others have shared, that it is a very frightening condition. Here are some groups where members have shared their experiences with hepatic encephalopathy:

-I have questions about Hepatic Encephalopathy
https://connect.mayoclinic.org/group/transplants/
and
Hepatic Encephalopathy is discussed by members in the beginning pages of this group:
-Liver pre-transplant question
https://connect.mayoclinic.org/discussion/liver-pre-transplant-question/

@rshangle, Are you being considered for a transplant? Are you a patient at MAyo? How can we support you as you?

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@rosemarya - thank you so much for reaching out.

I've become a big believer in support groups over the last eight-ish years, starting with my journey towards sobriety.

I'm probably at the early end of the encephalopathy scale, but even there it can be frighting and -very- disruptive mood - re: work, friends, family. I look forward to checking out the link you referenced.

I am a Mayo Clinic patient, since August 2022. I moved out to Minnesota (Northfield) in part to accept a job, and in part to be closer to Mayo in the hopes I could get in, and miraculously I did (through G.I.)

I know the docs and I would like me to be eligible for a transplant; at the moment, way before that, I need to lose about 60 more lbs (which will be about 110lbs total) to get my weight/BMI down to a level where serious complications wouldn't be a certainty. I'm doing the Mediterranean Diet, which took some adjustment but I'm doing it as closely as I can.

You all can keep doing what you're doing - it's good to be here. --Rick

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@mbentley

Great. I’m glad you had a good experience and now volunteering. I’ll be there April 17-21. I have Y90 mapping on Monday and Ablation on Tuesday. We will be staying at Hope lodge. They had all but one night on the 18th. Hopefully that it will become available that night also. We would love to meet you.

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Just sent you a private message with my contact info. Looking forward to meeting you.

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I am a post liver transplant patient. Surgery took place on the1/17/19
I have been reading that drinking lemon juice will be good for a post liver patient.
Any opionions please?

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@jamesduaiswamy

I am a post liver transplant patient. Surgery took place on the1/17/19
I have been reading that drinking lemon juice will be good for a post liver patient.
Any opionions please?

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@jamesduaiswamy, Welcome to Connect. I want to wish you belated Happy 4th Transplant Anniversary! I hope that you were able to do a little something special to commemorate the event.
I used to depend on lemon juice for flavor before my transplant when I had no sense of taste. Now, after 13+ beautiful years with m y transplant, I still enjoy a twist of lemon on foods, or lemon in my water or tea. I am extremely careful when dining out to ask for NO lemon because of possible germs from handling. I do enjoy lemonade in the summertime, however I have to be careful because too much lemonade makes me itch. So my mantra is moderation.

As for your question about lemon juice, I have not located any reference to specific benefits for a post liver transplant patient. I did see many lists of possible benefits that included: acne, hair care. potential for anticancer effects, antibacterial, weigh loss, managing cholesterol, lowering blood pressure, household cleaner, and insect repellant. there were two, that I saw that could possible relate to your question(?). , -prevention of kidney stones and a Hepatoprotective Effect that claimed that lemon juice can help protect the liver from the damage caused by chronic alcohol consumption. (BioMed Research International 2017 issue, the flavonoids in it aid in detoxing harmful metals from the blood)

James, I was not successful to locate resources to share here. Do you have a particular reason for opinions about lemon juice? What have you read about lemon juice for post liver transplant patients?

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@kowalskik

I went thru the evaluation in September of 2022 and was put on the list the day before Thanksgiving once all of my vaccines and testing complete. I got “the call” on December 13th at 10:13pm (I will never forget). Rushed up to mayo(although they said to relax and take a breather) and checked in at the ER. They take you and your caretaker to preop. You get your iv and Covid test and bloodwork. My donor was not even yet deceased (waiting on inevitable heart failure) but it was coming. I had the surgery that day once everyone reviewed the donor liver. I was blessed to not have a dry run. I will tell you that you will seat yourself on the operating table. Prepare for that. I wasn’t prepared and it shook me. Surgery was 6 hours long but my caretakers were texted updates the entire way. I was in icu for a little bit but quickly transferred to the transplant floor. I had Cirrohsis and no symptoms until March of last year. Then…boom… meld score of 26. I was not sick per normal standards, but my liver was quickly failing. I could explain this for hours. But if you have questions, I’m happy to answer them based upon my experience. I pray for the best for you. This is a miracle.

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Just wondering if you don’t mind if I ask where did you stay after you TX.
We are in Ky so we don’t know if we should buy a condo and resell when finished or not. I feel it may be a waste to rent. I figure we get a place a few months before the 6 month mark and stay until I’m finished with frequent visits to Mayo. Wondering what others have done.

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@kowalskik

Dr yataco is on all of my lab work requests, but I never met her. Mayo has a very large team. It’s great.

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I had the privilege to meet, in-person, one of those behind the scent wonderful "names" on all of the lab orders! When I introduced myself as a transplant recipient, and he shared that he had likely worked on my labs over the years. He was genuinely happy to meet one of the patients from the transplant department. We posed for a photo!

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@erikaclark

Hello! I am 16 weeks post transplant and have been actively searching for support groups to help me understand my new way of life. The mantra I use daily is " I am healing". (I tend to stress about getting better and think I should be doing more when I can't do as much as I would like). This is my way of reminding myself that my job right now is to listen to my body.
A little information about my journey: I had a disease call PLD (Polycystic Liver Disease) that became symptomatic. I was working right up to the time of transplant but exhausted and in pain and getting worse each day. I was not sure how much longer I could complete my daily tasks at work. My MELD score was low, therefore my best option was a live donor. All three of my adult sons went through the evaluation process and were not able to donate. This process took over a year from when they told me my only course of action was a transplant. My brother eventually became my donor and we went into surgery at Stanford on November 28, 2022. He is doing very well after selflessly putting himself through major surgery for me. They were able to accomplish the removal laparoscopically which made his recovery a bit easier. Interesting side note: my liver weighed over 20 lbs once they removed it. I am told by docs and those around me I am doing really well. I am dealing with bile duct issues and go in for another ERCP at the end of the month. Hopefully my leak has resolved and they can simply take out this last stent. If not, they will put in another. I am grateful for my doctors and the liver transplant team. I look forward to looking for posts about returning to work, lowering my Prograf dosage, managing set backs and emotions and managing my expectations while learning more about post transplant life.
Thanks in advance for simply being there to walk through this experience with me and others.

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@erikaclark, Welcome to connect! You have a remarkable story and I sincerely send my wishes and hopes for a continuing steady recovery. I will be my honor to walk with you as you join all of in supporting each other.
-----
Here is a collection of support conversations that have occurred during the past 12 months!
-3 weeks post liver transplant: when will I feel better?
https://connect.mayoclinic.org/discussion/3-weeks-post-liver-transplant/?
-Fatigue- post transplant- liver
https://connect.mayoclinic.org/discussion/fatigue-post-transplant-liver/
-Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
-Wisdom from transplant patients pre Covid?
https://connect.mayoclinic.org/discussion/wisdom-from-transplant-patients-pre-covid/
-Post Transplant - Core numbness and weakness
https://connect.mayoclinic.org/discussion/post-transplant-core-numbness-and-weakness/

and - 🙂
-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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@gerryp

I was transplanted at Mayo Jax about 1 year ago. The place is amazing. I relocated from Boston as my odds for transplant were much better here. The facilities here are relatively new (about 25 years) and immaculate. The campus is beautiful, with gardens, art installations, fountains - it embodies the Mayo philosophy of healing the “whole patient”. All patient rooms are single rooms and state of the art. I am so grateful to the care I received that I now volunteer on the Transplant floor each Wednesday as a nurse’s aide.
But my wait was complicated. I was treated at Mass General for over a year before being advised to seek treatment here in Jax. It took me just about 2 years from diagnosis to transplant - but my condition was very rare, so there were no statistics or protocol at UNOS for prioritizing patients with my condition. There are lots of local housing options here, and I found that my health improved while I waited simply by being in the FL sunshine. I would encourage you to join the weekly support group calls (each Tues at 11am via Zoom). You will meet many post & pre patients who have been down this road and can help allay your fears and answer any questions you might have about their experiences and treatment for similar condition as yours. Many patients get listed and receive the call not long after. That was not my experience. Between Mass Gen and Mayo I received 7 calls. They come any time of the day or night, so keep your phone with you and answer every unknown caller. My 7th call came at 1am on a Sunday night - and the 7th was the charm. Happy to speak privately with you or meet you and your caregiver when you arrive in Jax. We have a very large and supportive community here - so you won’t be alone.

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Hi Gerry. Just joined Arthur and I are trying to figure out this site was great to see you today on zoom. Love Paula

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@gaylea1

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

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I got to know that my liver had a problem accidentally.
When I had visited my primary, after a blood work, they found that my white bloods are at a questionable level. He requested me to go the Emergency Dept. and have it taken care. After procedure, I was requested to stay in the hospital for further review, which I felt was unusual.
After the hospital stay for 4 days, I was informed that I have cirrhosis in the liver and the only option is to have it transplanted.
This started the whole process and the hospital oncologist called several hospitals to find out who could work on my liver problem. The University of Virginia Transplant called, albeit it was a 100 miles one way from place. After a whole year of testing and checking on my health conditions etc. I was placed on the waiting list and my MELD score was very low. The ranges from 6 to 40 based on the lab test. The higher the number, one is more likely to receive a liver from a deceased donor or when an organ becomes available. A living person could also donate part of their liver to the patient, since the liver is the only organ which grows to its full size within a month.
I had a full time job and the nature of my job is I do not have to visit any office building and I could work remotely.
During the process one has to understand that there a so many test needs to be conducted and the hepetologists prescribe medications accordingly. Meanwhile, the patient ages very slowly, the face becomes dull, and also start the body starts itching and there will be ascites will build up in your stomach. One will be gaining weight and has to go to the hospital to have the fluid drained from the body. It is really messy process. Please note until the MELD score gets to 18 to 25 you will have no chance of getting a liver. It is a catch 22 situation. One has to get really sick to get a liver and there is no guarantee once you get real sick, that there will be a liver waiting for you. Once one is really ill, the survival rate at that point onwards is around 3 months.
My recommendation, just take one day at a time. If you do have real estate properties, auto, Bank account please transfer them to a Living Trust. I was continuously working during this time.
Also, after 9 months or so, my face was changing and I could feel, it’s time to go. I did not feel bad at this point because I did this to myself. I used to party a lot and drink as much as I can and ended up in trouble. I cannot blame this on anyone one except me. People around me were really helpful without any judgment.
For my luck, the hospital called me on a December day that they found a match. Just could not believe it. Thought they got the wrong person. The important fact someone who wants to give his/her part of the liver to someone to live. The transplant surgery took place on the 17th of January 2019 and it is almost 4 years and 2 months. I am still around.
Later on the Hospital set up a meeting with the donor, who was anonymous in the beginning of the process. I just fell of my chair when I met my donor. She was a very young girl aged 23. Originally from Allentown.PA was working in Lynchburg VA at the Liberty U.
I am an emigrant to the USA and most people say USA has problems. Wrong. The best and most generous people are here right in the USA. I am in contact with her on a regular basis and also have met her family in PA. I consider myself as a lottery winner. Have Faith in yourself and the rest is up to God who helps people all the time.
My medications are for life and I take approximately 12 tablets in the morning and 6 in the evening. Please ensure you have good insurance since it may cost around easily a million dollars. That is the story in a nutshell. I still take one day at a time. One will never know what’s in store for tomorrow.

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