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.

JK | @contentandwell | Jun 21, 2019

In reply to @christinelouise "Weight gain after liver transplant" + (show)

Hi, @christinelouise It's nice to welcome another post-liver-transplant patient. When was your transplant? If it was recent, and if you are on a high dose of prednisone, that is probably causing the weight gain. My transplant was in September 2016, at Mass General Hospital. I was on a higher dose of prednisone early after my transplant but I am now on a very low dose and I cannot blame my struggle with weight on that. I intentionally lost a lot of weight prior to transplant so I am trying to keep my weight down now.

Other than weight gain, how are you feeling? I hope well. It was such a wonderful feeling for the pre-transplant struggles to be history. I was on the dreaded lactulose for HE prior to transplant and hated it. When I was still in the hospital and had some pain my husband would console me with proclaiming "NO MORE LACTULOSE"! I was pretty fortunate through most of my pre-transplant days and other than HE episodes I felt well most of the time. The last six weeks were pretty horrible though so it was a tremendous relief to get that call.
JK

christinelouise | @christinelouise | Jun 21, 2019

Weight gain after liver transplant

JK | @contentandwell | Jun 17, 2019

In reply to @newlifesociety "A topic for your support group could include a donor family member tell their story of..." + (show)

@newlifesociety Great suggestion. For those of us post-transplant patients it would be so reassuring to hear that from the family of our donors, but if not from them specifically, from at least the family of a person whose death did save lives.
I know a great about my donor and I grieve her daily.
JK

New Life Society | @newlifesociety | Jun 17, 2019

A topic for your support group could include a donor family member tell their story of how their loved one saved lives. We have had speakers talk to the group about dermatology, anxiety, depression, medication side effects, evolution of transplant, stages and types of rejection, insurance and medication claims. there is a lot to talk about!

Rosemary, Volunteer Mentor | @rosemarya | May 31, 2019

@rodney9999, Here is some information I want to share with you and any organ recipient, especially the newer ones. I think that as a new recipient, you will find some useful information as you adjust to your new life. I invite you to join the conversations.

Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Transplant Medications: Everything You Need to Know
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-medications-everything-you-need-to-know/

rodney9999 | @rodney9999 | May 29, 2019

In reply to @rosemarya "Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that..." + (show)

Sorry...forgot to mention..valcyte for Hep C along with viread.

rodney9999 | @rodney9999 | May 29, 2019

In reply to @rosemarya "Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that..." + (show)

I forgot to say as well...thank you for the kind words.

rodney9999 | @rodney9999 | May 29, 2019

In reply to @rosemarya "Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that..." + (show)

Hi,

Regarding your question, I am taking viread.

Rosemary, Volunteer Mentor | @rosemarya | May 29, 2019

In reply to @rodney9999 "Thank you for moving the posting. I was on the waitlist for 6 months. I realize..." + (show)

Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that things are going well for you. I am 10 years post transplnat and I can remember the emotions as if it were last week!

Wow, that was a real honor for you and your wife to be asked by the doctor to speak with another couple about your experience with your decision to accept an at-risk (is that the correct term?) organ. That will be one of the moments that they will never forget. I look forward to hearing more of your story and your new life here on Connect.
As others have already told you, this is an inspiration. You and your wife are living examples of what is possible.

Do you require any extra medication,treatment, or monitoring due to receiving the HepB/C liver?

Oops, I almost forgot to say, "Welcome" to Connect!

jolinda | @jolinda | May 28, 2019

In reply to @rodney9999 "Thank you everyone for the nice welcome. My team informed me without acceptance of a higher..." + (show)

I really appreciate patients like you who pave the way! When asked if I would accept an organ from the high risk group I said, "yes". Truthfully I would take whatever I could. In the end it wasn't necessary for me to accept from a high risk donor. I'm glad you've shared your story so it is easier on thoes who come after you and are in your same situation. Congrats on a successful outcome and "thanks" for be brave for all of us in the transplant community. ❤