Any success stories anyone can share? I'm pre-transplant.

@azkellyw, I'm sending a virtual hug to you!
You are absolutely justified in searching for success stories specific to liver transplant patients. They are actually sprinkled throughout all of the transplant discussions becaus we all shae so many pre/post transplant concerns. So none of us is ever alone.
Now as for success stories with liver transplant - I am approaching 16 years since my liver and kidney transplant in 2009 at Mayo in Rochester. Does that qualify as a success story? I can say that my journey was/is worth it. My transplant team and my local PCP are always available and ready to provide any extra care that might be needed. I am still being monitored by my transplant team even though I am nearly 800 miles away.

Here are some success stories. I hope they life you up:
- 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/
- 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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@azkellyw, As you can see from these success photos and stories, each of us has a unique life story. I can certainly understand your current apprehension because I had the same concern. I did, however, say that to my transplant surgeon once, and she was able to put "my" situation into perspective for me.
Have you ever discussed your apprehension with your surgeon or team?

Yes, this help a lot. I have other apprehensions like others are more in need of the organ than I am because they might have kids, or an executive at a corporation or run their own business. I'm getting better at removing these thoughts from my mind. I've been learning Mindfulness without the yoga (missing four discs from my lumbar and a pinched nerve in my neck both waiting for my platelets to go up) but I think that Mindfulness is a little more difficult for my with the HE and anxiety I've had since I was born. I keep trying and adult coloring is a good distraction. My psychiatrist said there were just as many unworthy recipients as there are good ones and I need to focus on me and my health. This is such a long journey.

@azkellyw I’m sending you a big virtual hug, first and foremost. My husband struggled with some of the same thoughts, “I’ve lived my life, raised 3 kids…” but a priest at Mayo Jax gave him some wisdom that really helped. Paraphrasing here, but basically, “you’ll receive your gift of life because your journey and purpose here are not finished. Your donor’s journey is done and they are passing the relay baton to you to continue your journey.” This message helped a lot, and he was successfully transplanted in 2022.

My husband became catastrophically ill in 2020 when a gallbladder attack put him into septic shock and organ failure. When the dust settled 6 months later, we learned his liver had been completely destroyed and transplant was the only option. Since transplant, he has completely regained his health, and it was a long road back from feeding tube, physical failure, and numerous other problems. But once he was transplanted, despite a few initial setbacks, his progress has been steady. Was it hard work initially, yes, but he has worked hard on nutrition and exercise and now is able to engage in all his activities. So keep the faith and stay on the list.

We know many people in the transplant community who have been transplanted for years enjoying their lives. Stay focused on your health, doing what you can to maintain mobility and a positive attitude. Good luck in your journey.

This is my husband’s success story.
https://newsnetwork.mayoclinic.org/discussion/liver-transplant-patient-becomes-volunteer-for-department-that-saved-his-life/
Ps. Join the Mayo’s Second Chance support group. If you’re are in Jacksonville, we are happy to meet you.

Thank you! I'm going to print out and frame what your husband was told and hang it in my office. What a great way to put patients at ease during an emotional time in their lives. I'm in Arizona....

You have every right to feel the way you do. I can only speak for my story. My liver was badly damaged and I had been treated by a wonderful hepatologist for a year and then transferred to the pre-transplant specialists. I received my new liver 7 months ago. I won't sugar coat the 8 weeks after surgery, again - this was my experience, but it took time to recover, so please give yourself some grace. I was very weak due to my poor condition pre-transplant. Now, I feel wonderful. My new liver is working wonderfully, medications have been reduced and my blood levels are spot on. I forgot what it felt like to feel good. It's a blessing. I'm 67 female.

I am 68 and coming up on 6 years since I had my transplant. I was diagnosed with alpha 1 and the only cure was a transplant. I had one issue lthe first year and had to have an additional out patient surgery. I have not experienced any rejection issues and I am on a very low dose of Tacromilis. I still go for blood work every 2 or so months. I have taken all the Covid vaccines, flu and pneumonia. The meds the first year can be an adjustment to side effects. I wrote a letter of thanks to the donors family and found out my donor was 50 and a nurse and passed of a stroke. I felt so thankful and yet so sad for her family’s loss. My advice listen to what your Drs tell you, call with any questions and be mindful of situations where you might risk getting sick. (At least the first year when your white blood count maybe low).

PS I was also very nervous and I suffered for years with terrible anxiety. I wish I would have spoken to someone about my fears. I was diagnosed with Alpha 1 and my Meld score went from 15 to 30 ish in a couple months- I was so sick and having fluid drained every 6 days. I am sending you a hug !!

Good morning from Canada, I just celebrated my fourth anniversary post liver transplant. I was diagnosed 13 years ago with primary biliary cholangitis. I went along doing okay with my incurable disease but all of a sudden it got out of control and I ended up in stage 4 liver disease with cirrhosis and needed liver transplant. I had my liver transplant on Canadian Thanksgiving weekend in October 2020. I had a lot of complications afterwards that had actually nothing to do with my liver just to do with the surgery of the transplant. I had a biliary leak. My biliary disintegrated and I leaked bile into my abdomen that required emergency surgery to clean it up. During that cleanup they nicked bowel so I had to go back in for surgery again but nothing to do with my transplant per se. I had a few infections that required hospitalization and I would say in the last 2 years have been hospital free. I take low dose tacrolimus and I go now for blood work every 3 months everything has stabilized. I wrote a letter to my donor family and have had the honour of meeting my donor and his family. This is a gift that there are no words to express and like the previous person has said in their letters. Do everything your doctors tell you get your shots. Get vaccinated against whatever you can before your transplant and continue with annual vaccinations after. I get flu, covid and whatever vaccines are updated every year RSV everything. This is a gift and we need to treat it. Respectfully, you don't need to treat it like a porcelain doll or a crystal glass. You do need to respect your gift and live life to the fullest. I'm not the transplant recipient that's going to jump jump out of airplanes or bungee jump in the nude in the Grand Canyon. I am the the transplant recipient who gets to live to see her first grandchild. I wish you the very best and whoever you pray to. I ask Godspeed and God's blessings to you and your family. 💗🍁🇨🇦🙏

Sorry I didn't meet my donor. I met my donor's mother and stepfather.

My other apprehension is that my best friend who had been transplanted six years prior died from cancer of the lungs. She didn't smoke and didn't know why she was having trouble breathing...thinking it was COVID but tested negative. She got to the hospital and they told her she had lung cancer that had spread to her colon. Surprised both of us. She had been struggling with her new liver for the prior two years but was fine for the first four. She went to hospice and died in a few days. I don't want to accept a new liver from a donor then die from cancer making it useless for someone else. There was no real explanation about when or how she got cancer but it's scary to think about. On the other hand anyone can get cancer at any time so who knows if she would have gotten it anyway. My best friend from high school died the day after Christmas last month from cancer and she never needed a transplant. She fought hers for three years and still didn't make it and she was a nurse for 30 years. The common denominator is they both lived in Jacksonville but never met each other. All of this makes my head spin and trying to convince myself that a transplant is the right thing to do gets harder as I get older. I've been dealing with it for so long you think I'd be able to make a decision by now. Thanks for listening.