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.

jeanne5009 | @jeanne5009 | Feb 8, 2020

Rosemary is the best example we have of the multitude of things we can face during this journey. She was right there for Gaylea when she went through even more frighening events. All of us add our 2 cents to make it bearable for others. We are an educated caring group of human beings. Life is hard for us in different degrees, but together we make a huge difference. Thank you all for sharing and caring.

JK | @contentandwell | Feb 8, 2020

In reply to @1bigblacksuv "congratulations on longivity i am at three years + 2 TIA strokes." + (show)

@1bigblacksuv I am also 3 years post-transplant, mine was on 09.23.2016. Were the TIAs related to the transplant? My daughter had one a number of years ago but she’s been fine ever since. She is a migraine sufferer and I think they are at a higher risk of them. How have you been?
JK

Rosemary, Volunteer Mentor | @rosemarya | Feb 9, 2020

In reply to @rosemarya "I want to say thank you to all of the members who are so graciously sharing,..." + (show)

@rosemarya

I want to say thank you to all of the members who are so graciously sharing, asking questions, and supporting other transplant patients and loved ones. I wish I had known you when I was going thru the transplant experience!

I have recently scheduled my appointment for my annual evaluation at Mayo. I can hardly believe that this will be my 11th year since my transplant surgery. In some ways it seems like just yesterday and yet it also feels like a lifetime ago. Every year at this time, I am faced with the memories of my own difficult phase in my own transplant journey that included: being inactivated from the transplant list from mid January 2009 until March 13, 2009; acute kidney failure and dialysis; emergency transport and critical care in regional ICU; medical flight to Mayo Rochester where I found out I needed a kidney transplant in addition to liver transplant; in April 2009 got a simultaneous liver and kidney transplant.
By now, I am familiar with the scheduled tests and protocol procedures, so there is less stress. I chose to share this part of my experience to let you know that anything and everything is possible even when it appears hopeless.

I have spent the greater part of my afternoon viewing the posts in this support group discussion. Wow! I am so amazed at the vast amount of kindness and support that has occurred here. . @frankw54, @jerrydrennan, @calikellyw, @calikellyw, @mego2k, @rodney9999, @christinelouise, @luckonetj, @tr1pol1sue, @danab, @des46893, @jim1208, @flagal22, @livertrex, @wildcat, @benlam11, @tayloryvette, @racing212, @leahd, @skipmarsliver, @tgshomes, @mostlybill, @slslape56, @jws10, @gaylea1, @jeanne5009, @jodeej, @stella25 - Won't you drop in to say, "Hi"?

This is a support group - let's keep it going - What do you want to talk about? How are you getting along? What would you like to ask? What would you like to share?

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@gaylea1, @jeanne5009, @racing212, @1bigblacksuv, @joanaiken,- Thank you for your kind words. You are correct about how we work together and how we share our experiences with each other to help others thru the difficult and seemingly unbearable aspects of our transplant journeys.

-I clearly remember that when I had a procedure at Mayo, there would be a nurse who came to my bedside. She would call me by name; then she would introduce herself and she would ask me if I had any questions. She held my hand and told me that she would be with me. I also remember feeling a gentle little squeeze to my hand as the anesthesia took effect. This was comforting and reassuring to me each time it happened. - That is what drives me to remain actively engaged on Connect.

@joanaiken, Happy 10th Anniversary to you! One of the things that I have encountered from my friends is that they are surprised when they learn that I am still taking medications, and still doing labs, and still being vigilant about my health. Many folks don't realize that our transplantd organs require a lifetime committment. Have you ever encountered that kind of situation?
Are you already on the transplant list for a kidney? Does having a transpanted liver make this a more complex situation?

@gaylea1, I remember when we first met on Connect at the beginning of your own journey. I am happy that I was able to provide you with some support. Did you know how much I hurt along with you? Well, I did. I also remember when you posted that you had received the Call and were heading to the hospital. I paced the floor that day as I prayed along with you and recalled my own surgery experience.

@racing212, @jeanne5009, @1bigblacksuv, as always, I send you my continued thoughts and support. And I thank you and encourage you to continue to share the love and support that you are extending to others. Sometimes we speak with words, and sometimes we speak with our presence. We never know who we are helping when we join together❤

joanaiken | @joanaiken | Feb 9, 2020

In reply to @rosemarya "@gaylea1, @jeanne5009, @racing212, @1bigblacksuv, @joanaiken,- Thank you for your kind words. You are correct about how..." + (show)

@rosemarya

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Thank you for the anniversary wishes ! It felt like a real milestone. This was my second liver transplant, as my original one in 2008 failed. In MY mind, adding a kidney transplant would be incredibly complex. However, I am told that it is actually a little better, as I am already immunosuppressed. Yes, I still take meds and have labs drawn in varying intervals. It is a lifelong commitment and we must never forget that. May I ask how you became a volunteer mentor ? Best wishes to you in our shared continued journey.

Rosemary, Volunteer Mentor | @rosemarya | Feb 10, 2020

In reply to @joanaiken "Thank you for the anniversary wishes ! It felt like a real milestone. This was my..." + (show)

@joanaiken, Thanks for sharing that information about what you learned about the potentially positive effects of being immunosuppressed. Like you, I had suspected the opposite would be true.

After returning home from my transplant at Mayo Rochester I wanted to meet others who were living with organ transplants. I found Mayo Connect and I began to interact with other patients. Eventually I discovered that by sharing my own experiences, I was helping others. Perhaps it was the mom or the teacher part of me, and it came naturally for me to make a personal committment to be available when somebody had a question or needed a virtual hand to hold. When Mayo Connect initiated the Volunteer Mentor Program, I was approached by the community director about taking on a role as mentor.

Have you seen the "PAGES" section of Connect?
I want to suggest that you go to the Pages>About Connect: Who, What & Why>Newsfeed. You will see a section about the Volunteer Mentor Program that lists the criteria for volunteer mentors. https://connect.mayoclinic.org/page/about-connect/

Here is an article that was presented in the Pages>Transplant>Newsfeed
Meet Rosemary: Transplant Recipient and Mentor
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-rosemary-transplant-recipient-and-mentor/

Joanaiken, Do you live in the vicinity of the center where you are listed for a kidney? Is it the same transplant center where you had your liver transplant?

joanaiken | @joanaiken | Feb 10, 2020

In reply to @rosemarya "@joanaiken, Thanks for sharing that information about what you learned about the potentially positive effects of..." + (show)

Thank you for a timely and well written response. I am a retired nurse who started my transplant journey at age 53. After the second liver transplant, which was difficult and affected me greatly, I could not return to work and function even near what I had been. I do live near Mayo in Phoenix and have had my transplant and other related care there. I love the continuity of care and their high standards for healthcare. Thank you for your contributions to the transplant community.

stella25 | @stella25 | Feb 10, 2020

In reply to @rosemarya "I want to say thank you to all of the members who are so graciously sharing,..." + (show)

@rosemarya

This is a support group - let's keep it going - What do you want to talk about? How are you getting along? What would you like to ask? What would you like to share?

Jump to this post

Hi Rosemary! Congratulations on your 11th anniversary!! You are amazing & such an inspiration to us all. I had so many questions when my son was listed for liver transplant a year ago. You were a huge source of comfort as you graciously answered those questions & extremely generous in sharing your own experience with all of us. I am forever grateful to you. To update you on my son. His MELD was at 34 when he was listed. It has since dropped and has remained fairly steady between around 14 & 17. Of course this makes it almost impossible for him to receive a deceased donor's liver. We have been reaching out to family & friends for a potential living donor. So far we have had 8 donors come forward. Unfortunately, all have been rejected for one reason or another. We continue our search & remain positive & hopeful. I am in complete & total awe of the individuals who have offered. True hero's:-) My very best to those of you who have been transplanted. May good health shine upon you. Prayers & love to all those waiting to be transplanted. You are not alone. We are with you:-) xoxo

JK | @contentandwell | Feb 10, 2020

In reply to @stella25 "Hi Rosemary! Congratulations on your 11th anniversary!! You are amazing & such an inspiration to us..." + (show)

@stella25. I sincerely hope you find a donor. I think MELDs can be so misleading. I’ve known of very sick people who had fairly low MELDs. Mine was 28 when I received my transplant and about to have an increase.
I never looked for a living donor. My son and daughter both volunteered but I refused him because I felt it would be too much of a disruption to his career but I finally decided to let my daughter (she was a freelancer and could work from here) get tested and she was not able to be a candidate. Back then there were more concerns about donors so I wanted her to get tested just in case things got desperate. Thankfully I was called just in time.
JK

lisamb | @lisamb | Feb 11, 2020

I am a 20 month post liver transplant and want to offer support to anyone awaiting any sort of transplant. Until you are there, few can grasp the long road that is to be traveled. My journey started in February of 2017, was transplanted in June 2018 from a deceased donor. I would be honored to offer great hope to anyone that responds and share stories pre and post transplant. Be strong.. Somehow I messed this up, I am not Lissa, I am Dwight.