Are there any other pre-liver transplant caregivers out there?

Posted by jodeej @jodeej, Jan 29, 2018

Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!

Interested in more discussions like this? Go to the Transplants Support Group.

Rosemary, Volunteer Mentor | @rosemarya | Apr 24, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@yuppaal, Yes it is! Thank you for your message - hope and encouragement.

I would like to welcome you to Mayo Clinic Connect. We are here to share our experiences and to ask, answer questions, and to support and encourage each other along the transplant journey. As a volunteer mentor, I try to connect our members to conversations that might be meaningful to them. I invite you to take a look at any of our discussions groups and to join in wherever you want. Also know that you are welcome to begin your own discussion conversation.

Would you be comfortable to share a little about your self? Donor? Caregiver? Recipient?
I look forward to hearing from you.
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Apr 24, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@yuppaal, This is a last minute notice but I want to share with you an event that is happening today.

Video Q&A and Behind-the-Scenes: Liver Transplant
Tue, Apr 24, 2018
12:00pm to 1:00pm CT
https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

Rosemary, Volunteer Mentor | @rosemarya | Apr 24, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@jodeej, @gaylea1
Life is on hold.
Miracles happen.
Believe, Trust, Keep looking ahead with Hope!

Rosemary

gaylea1 | @gaylea1 | Apr 24, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@jodeej I agree that keeping my family on tenderhooks has been a large concern to me. I told them to just go and enjoy themselves but they are very reluctant to do so. I love them all so much.

JK | @contentandwell | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@gayleaf1 As @jodeej put it, I too dealt with it with prayer and exercise. I also tried to just not think of it any more than necessary. Dwelling on it does no good, it just ruins the day. I lived as normal life as possible, looking as good as I could each day, and that helped a lot. I actually put more effort into looking good then than I do generally because I didn't want anyone to think I looked sick.
JK

JK | @contentandwell | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@gayleaf1 @jodeej I know I tend to be sort of weird about surgery but I actually never really worried about it! Not long before my transplant I started going downhill quickly so at that point I was feeling I couldn't wait the amount of time they had indicated it would be before I got the call, so when I got it we were totally surprised and drove to Boston very calmly! As I look back at it all it was almost surreal, how calm we both were, then and when we waited about 8 hours for the surgery to begin.
The thing that created anxiety in me was HE episodes. Although with the medications I had few, I woke up every morning wondering if that would be a day when I would have one. Mine generally started with an upset stomach so whenever my stomach was the slightest upset I got nervous and headed home from wherever I was. Usually it was just a regular, old upset stomach. I still actually get tears is my eyes when I think of the HE episodes. Feeling like you don't have control of your mind is the absolute worst, or at least was for me.
JK

JK | @contentandwell | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@jodeej Your husband's condition sounds a lot like mine was. What is his blood type? Mine was B and my MELD was 28 when I had the transplant. I was also due for it to be increased, and I also got exception points. I really could have worked because when not having an HE episode I was perfectly cognizant but the business would have needed to be understanding of those HE episodes and any absences I had because of them.
JK

JK | @contentandwell | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@jeanne5009 You are so fortunate to have such a great network to help you. My husband was great but my son and daughter are a distance so could not be much help. My dear sister is not far but she falls apart in situations like this so she would not be much help at all. My friends are not the type I would ask to give me help.
I don't think it takes much to impress on them the seriousness of your condition. I know my two both did some research when they found out what I was dealing with. They will come through for you, I am sure.
JK

JK | @contentandwell | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@jodeej You have good kids. Mine were less involved because they live so far away, plus the hospital indicated that it was best not to have a lot of visitors right after transplant to minimize the risk of infection. They both did come home while I was sick, my daughter frequently since she lives two states away, my son less frequently since he has to fly across the country from CA, but he did.
JK

jodeej | @jodeej | Apr 25, 2018

In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)

@contentandwell our kids are really great! They are willing to do whatever they can to help out. Thankfully, they are all fairly close, too. The furthest is our son, but he is still only 6-7 hours. My husband's blood type is A+ so he has a longer wait. It's pretty common. The doctor upped his anxiety meds and he hasn't mentioned any HE episodes the past few days. So, maybe that is what was causing it? It's only been a little over a week, so we will see what happens.
JoDee