Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@kltchrmn

@jim1208
I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.

Jump to this post

@kltchrmn, Waiting for a transplant is a true test of patience. I think that you are most fortunate to be a patient at Mayo. And you are fortunate to be so near to a support group! I live in Kentucky, and there is no support group here, I felt completely alone when I was developing liver failure. I was flown to Mayo from ICU where I did live for a while and receive my transplant. When I returned home afterwards, I began looking for someone to talk to, that is when I found Mayo Connect.
@kltchrmn, What kind of things do talk about in a support group?

REPLY
@rosemarya

@kltchrmn, Waiting for a transplant is a true test of patience. I think that you are most fortunate to be a patient at Mayo. And you are fortunate to be so near to a support group! I live in Kentucky, and there is no support group here, I felt completely alone when I was developing liver failure. I was flown to Mayo from ICU where I did live for a while and receive my transplant. When I returned home afterwards, I began looking for someone to talk to, that is when I found Mayo Connect.
@kltchrmn, What kind of things do talk about in a support group?

Jump to this post

I’ve learned so much. The group noticed my trembling hands and suggested I look into lactulose. We have guest speakers sometimes. New transplant patients come while they’re still hospitalized. Caregivers ask a lot of questions. It’s so nice to be able to talk to and listen to a group that totally understand. We laugh a lot.

I’m very glad to be at Mayo and really like my team.

REPLY
@jim1208

Well I am 3 years sober now so I go to meetings, I sponsor men when I can and I have a sponsor. Talking about things helps some. I wish I would have seen this support group sooner. Thank you everyone for your kind responses!

Jump to this post

@luckonetj and @jim1208, I appreciate your sharing about sobriety, recovery and life. Did you know that there is an Addiction & Recovery group on Connect here: https://connect.mayoclinic.org/group/addiction-recovery/

I would welcome your participation in that group.

REPLY

Thank you for the link!

REPLY
@rosemarya

That is a big milestone for you, @gaylea1. This has been one big rollercoaster year for you.
Be careful driving. When I returned to driving after my transplant and recovery, I learned that distractions became a problem for my focus. Even today, I find that I need quiet in my car.

Jump to this post

@rosemarya yes it has been a long 2 years for me but now I can look back and be thankful, grateful for where I am today. I remember members who told me to hang tight and that my time will come. Now I am advising others that the call will come. I never thought I'd get to this other side. Thank you for your guidance snd unfailing support ❤

REPLY
@rosemarya

Hi, @livertrex, and Welcome to Connect. I am happy that you have chosen to participate by sharing your experience. Before my transpant, I did not have HE, but I did not drive because I becamem physically too sick. My husband, who was retired, was my caregiver and my driver when I needed to go somewhere. That was 10 years ago.

How are you getting along since the HE episode? Are you waiting for a liver transplant?

Jump to this post

Yes, I am waiting.went to ER for this twice. Hard to work 40 hours a week. My last episode and ct scan they found tumor. I have had a tace procedure.it didn't work. Going through radiation now.

REPLY

I feel like a failure because of not being able to work. I have good mornings but have to nap daily for 2 to 3 hours.

REPLY
@gaylea1

@rosemarya yes it has been a long 2 years for me but now I can look back and be thankful, grateful for where I am today. I remember members who told me to hang tight and that my time will come. Now I am advising others that the call will come. I never thought I'd get to this other side. Thank you for your guidance snd unfailing support ❤

Jump to this post

Glad the hard part of your journey is behind you!

REPLY
@jim1208

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

Jump to this post

@jim1208 I am very familiar with your symptoms. I was also very cold all of the time. I was so bundled up in bed in bed it was ridiculous. I went about 16 or 17 months on the waiting list and then somehow was transplanted sooner than anticipated, in September of 2016, at MELD 28. I was about to have my MELD increased and things had gone downhill so perhaps they can take all of that into account.
I had severe HE episodes but most of the time I was very cognitive and able to live my normal life. I did have additional symptoms — lowering platelet counts, cramps in my legs and hands, fluid retention in my feet frequently, and my handwriting deteriorated terribly. My hands were very shaky. I could not take a picture they were so shaky, and I couldn't get a spoonful of soup to my mouth without it spilling. Also, I did have to nap daily.

You are in one of those tough situations. Not sick enough to get high on the list, but perhaps feeling miserable? I guess you just have to hang in there until things get worse, but some people are able to avoid a transplant with a good diet and other methods. That of course is the best, if you are feeling fairly well.
JK

REPLY
@gaylea1

I went into a hepatic encephlalopathic coma that kept me in hospital for a month. I was in and out of consciousness the whole time. It took 2 months to remeber the day of the week, the date and the month. I forgot my address, phone number and all banking and personal accounts. Luckily i had my children as my Power of Attorneys for property already in place. I still can't recall anything about my stay in the hospital during that time. Apparently my life was on the line touch and go for the first few weeks. My kids were preparing for the worst every day. I have extreme feelings of guilt that they had to go through that. The good news is that I receved my liver November 28 2018. I am so grateful every single day.
Note: Take your lactulose if prescribed to avoid an HE episode!

Jump to this post

@gaylea1 That's a long spell in the hospital; for HE. I was in a few times for two or three days. Lactulose definitely helps, but xifaxan helped me even more. Taking that I went almost a year with no HE episodes. When I did have one again they said it was because my liver was getting worse and I had resume taking lactulose.
When I got close to my transplant things really went downhill and both my husband and my sister were prepared for the worse. My kids live away and were not aware of how bad I was.
JK

Liked by gaylea1

REPLY
@jim1208

I feel like a failure because of not being able to work. I have good mornings but have to nap daily for 2 to 3 hours.

Jump to this post

@jim1208, you are not a failure. Your life is in a holding pattern. And no one has a crystal ball to predict the future. So keep on forging ahead with baby steps, one day at a time. That includes keeping doctor appointments and taking good care of you – even taking naps.
When do you see doctor again for update?

REPLY

July 24th I am back at Mayo. Thank you so much!

REPLY
@jim1208

July 24th I am back at Mayo. Thank you so much!

Jump to this post

Do you have to stay over night? Have you looked into Gift of Life House?

REPLY
@jim1208

I feel like a failure because of not being able to work. I have good mornings but have to nap daily for 2 to 3 hours.

Jump to this post

Jim, you are following Doctors orders. Seams to me you're a good patient. In my case I had limited choices and non existent advice from my first doctor.

REPLY
@rosemarya

@jim1208, you are not a failure. Your life is in a holding pattern. And no one has a crystal ball to predict the future. So keep on forging ahead with baby steps, one day at a time. That includes keeping doctor appointments and taking good care of you – even taking naps.
When do you see doctor again for update?

Jump to this post

@jim1208 You are not a faliure! Please try to keep positive. It seems that things are difficult now and they are. I remember feeling low many times but just knowing that there is light at the end of the tunnel really helps. You will get through this. Nap when you feel tired. Bundle up when your cold. Treat yourself well. Keep strong. We are all here to help you through this. The group is always here when you have questions or concerns. We're not doctors but sharing experiences helps so much.

REPLY
Please login or register to post a reply.