1. < Transplants

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.

racing212 | @racing212 | Feb 22, 2020
In reply to @beckyy39 "I'm in florida and am supposed to go to my eval visit March 10" + (show)
@beckyy39

I'm in florida and am supposed to go to my eval visit March 10

Jump to this post

Im in Minnesota and go to mayo march 16th and 17th

REPLY
1 reply
beckyy39 | @beckyy39 | Feb 22, 2020
In reply to @mathewsw "@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living..." + (show)
@mathewsw

@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living Donor Liver Transplants at Mayo Clinic Jacksonville. It sort of caught me off guard and I completely forgot to ask if that was also the same at the other two Mayo Clinic locations. Does anyone on here know?

Jump to this post

@mathewsw I also found out that although I have 2 children willing to donate, Jacksonville no longer does this. I was thrown for a loop since I assume this will make the process much longer if they had been a match.

REPLY
beckyy39 | @beckyy39 | Feb 22, 2020

The process and what to expect with support resources, caregiver, financial, medication, transportation, etc.

REPLY
1 reply
beckyy39 | @beckyy39 | Feb 22, 2020
In reply to @jeanne5009 "I'm in FL and would love to be part of the group. Anyhing about HE interests..." + (show)
@jeanne5009

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

Jump to this post

I'm in florida and am supposed to go to my eval visit March 10

REPLY
1 reply
racing212 | @racing212 | Feb 22, 2020
In reply to @jeanne5009 "I'm in FL and would love to be part of the group. Anyhing about HE interests..." + (show)
@jeanne5009

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

Jump to this post

I go to mayo mn,and evey 3 months my meld is 19. And get HE often. I get it so bad i spend days in the hospital and even been transford to bigger hospital's

REPLY
jeanne5009 | @jeanne5009 | Feb 22, 2020

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

REPLY
3 replies
joanaiken | @joanaiken | Feb 16, 2020

Thank you so very much, Rosemary! I am ok with the procedure. Mayo has liver biopsies down to a tolerable experience. I have had several through the years. It's more the 40 mg of Prednisone that has been rather distracting. LOL Hugs back.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 16, 2020
In reply to @joanaiken "Yep. I have had annual evaluations for 10 years. The last few have not included biopsy..." + (show)
@joanaiken

Yep. I have had annual evaluations for 10 years. The last few have not included biopsy unless indicated. Funny you should mention biopsy. I have one with ultrasound scheduled, along with repeat labs on Monday morning. Had 2 sets of labs drawn this week that showed a dramatic increase in the liver enzymes. I am a nervous wreck today. I think this is due to a Prograf dose decrease about 3 months ago . The dose was bumped up starting this PM. It has been quite the journey in managing both the kidney and liver. Thanks for hearing me out.

Jump to this post

@joanaiken, I'll be thinking of you tomorrow and hoping that the results of the biopsy are satisfactory. It will be probably be a long and stressful day for you.
Hugs,

REPLY
joanaiken | @joanaiken | Feb 15, 2020
In reply to @contentandwell "@rosemary Good link. My transplant does keep a careful watch on everything that involves my transplant...." + (show)
@contentandwell

@rosemary Good link. My transplant does keep a careful watch on everything that involves my transplant. They leave other issues to my PCP, I think that is unlike Mayo.
On my lab work last week my sirolimus was a bit higher than it had been and they called me about it. They are leaving me as is for now but want me to get tested again sooner than usual so if it is higher they can decrease my medication. They want it at the lowest dose that will protect my liver but at the same time not leave me too unprotected to germs and infections.
Unfortunately, my blood counts cause me to have to continue prednisone. 😥
JK

Jump to this post

I feel ya.

REPLY
JK | @contentandwell | Feb 15, 2020
In reply to @gaylea1 "@contentandwell. The (liver) transplant team is made up of a group of hepatologists at University Hospital...." + (show)
@gaylea1

@contentandwell. The (liver) transplant team is made up of a group of hepatologists at University Hospital. I do have labs done every month still. They are keeping a close eye on me. I normally drink at least 64 oz water daily. I do have some symptoms, loss of appetite, restless nights and some diziness.

Jump to this post

@gaylea1 At Mass General they do work in cooperation with each other of course but pre-transplant you generally only see the hepatologist, and post only the transplant team. The hepatologist has let me know though that she is there for me if I need anything.

I never had a false alarm call. Like you, I was called at right around noon. We got to the hospital in mid-afternoon, but the transplant didn't occur until about 12:30 A.M.
When they called I asked if I could take a shower before I came and they said no! Come right away. I suspect they just wanted to have me there to make sure I had nothing to eat in the pre-surgery time.
JK

REPLY
View MoreView Less
Please sign in or register to post a reply.