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.

Rosemary, Volunteer Mentor | @rosemarya | Jul 21 1:46pm

In reply to @rachann "I have a new liver. I very much want to connect with other post transplant patients." + (show)

Hi, @rachann. I want to extend my Welcome and to add my Congratulations on your new liver transplant. My transplant was 16 years ago, and I can still feel the thrill that I felt when waking from my surgery and hearing my son say in a loud excited voice, "Mom! You're not yellow anymore!" I had been seriously jaundiced, so this is my first realization that I was not dreaming! I will admit that it was an adjustment for me to get used to gradually becoming healthy again as I healed and regained my strength.

How are you feeling now that you had the surgery? Is thre anything that you wish that you had known before your transplant that might have better prepared you? Or that might even be helpful to someone else who is approaching their own liver transplant surgery/recovery?

gap | @gerryp | Jul 18 6:35pm

In reply to @colleenyoung "Welcome, @rachann. I moved your post to this discussion called: - Liver transplant - Let's support..." + (show)

Thanks Colleen. @rachann, happy to connect with you. I am about 3.5 years post liver transplant and am doing great. It was a tough slog at first - but I would say I felt amazing after about 3 months. My transplant was at Mayo Jax after waiting nearly 2 years. My life has been restored.

Colleen Young, Connect Director | @colleenyoung | Jul 18 4:06pm

In reply to @rachann "I have a new liver. I very much want to connect with other post transplant patients." + (show)

Welcome, @rachann. I moved your post to this discussion called:
- Liver transplant - Let's support each other https://connect.mayoclinic.org/discussion/liver-support-group/

The group has been sharing for years and you'll meet fellow liver transplant recipients like @rosemarya @gaylea1 @jeanne5009 @yolonda4009 @brenda62 @pgruetz @footballmum @gerryp @patricia30 and many more. Some are nursing a new liver while others are celebrating 15 years or more, and everyting in between.

You might also like this related discussion:
- At home with my new liver transplant https://connect.mayoclinic.org/discussion/at-home-with-my-new-liver-transplant/

Back to you, @rachann. How are you doing with your new liver? When did you have transplant surgery? Got questions?

rachann | @rachann | Jul 18 2:02pm

I have a new liver. I very much want to connect with other post transplant patients.

fowlair Mary F | @fowlair | Jul 18 7:01am

I am just beginning the evaluation process. My appointments are over the next two weeks. Why do I need a primary caregiver there with me? I’ll be hiring a CNA as my caregiver post-transplant. I certainly can’t hire someone a year in advance to go to appointments with me.

Rosemary, Volunteer Mentor | @rosemarya | Jul 17 12:58pm

In reply to @yolonda4009 "Good afternoon, I am glad to have found this support group! I am a recipient of..." + (show)

Hi, @yolonda4009, and Welcome to Connect! I'm glad that you have found us and have joined the Mayo Connect on-line patient support community.
I congratulate you for your 5 year with your liver transplant, and I look forward to more conversations with you. By way of introduction, I am a liver and kiedney transplant recipient. I was transplanted at Mayo in Rochester in 2009. Since I live nearly 800 miles away from Mayo, I welcomed the opportunity to join Connect and to learn from other transplant recipients and was happy to be able to add support and encouragement as others navigate their transplant journey. No one's journey is identical - however we are all in this together, and it is so comforting to chat with others who understand abouy liver transplant. I look forward to learning about your story!
Loss of hair is a big topic around here! I experienced hair thinnng after my transplant , and also fingernail thinning/regrowth. I'm going to estimate that it took almost a year for my hair to stop falling out and to begin to be healthy again.

Here are some discussions where others have shared about their hair loss after transplant: Please know that you are welcome to jump right in! And meet others.
-Hair loss after transplant, probably Tacrolimus: Anyone change meds?
https://connect.mayoclinic.org/discussion/hair-loss-after-transplant-probably-tacronlimis/
-After transplant I have hair loss due to meds: Will it come back?
https://connect.mayoclinic.org/discussion/liver-transplant-hair-loss/
-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
.
@yolonda4009, Did your hair recently begin to fall out? Have you changed medications as a possible reason? Overall, how are you and your liver getting along?

yolonda4009 | @yolonda4009 | Jul 17 10:30am

Good afternoon,
I am glad to have found this support group!
I am a recipient of a liver transplant almost 5 years post. I received my transplant on 2020! I would like to hear about others and their experiences. I am currently on sirolimus .5 I have recently experienced hair loss. I was wondering if anyone has experienced the same.

rachel5239 | @rachel5239 | Jul 7 2:51pm

In reply to @carecare "Please share your experience. I’m trying to learn as much as I can. Thank you" + (show)

I would need to know what your concerns are. Right now I am dealing with a lot of skin cancers. I have lost count of how many Mohs surgeries I have had. They have all been squamous cell or basil cell. They are not dangerous all long as you have them checked. I tell people if they are new and tender, have them looked at. They come in a lot of different shapes and sizes. It probably took between 15 to 20 years before they started showing up. I have been careful but all of my damage had already been done. When we were younger we did a lot of boating and water skiing. Also, I was 35 when I had my transplant.