Living with someone on the liver transplant list is a very challenging role. Once you are activated, there is a lot of excitement but if the wait is long, that excitement wanes.
My husband was on the waiting list for 23 months which is quite long and during that time I watched him get sicker and sicker, slower and slower in mobility and gradually lose many of the things that most of us take for granted...driving, work, desire to socialise etc.
His personality changed a lot, and during that time I felt I had lost him, but it is really just the disease and the encephalopathy.
As the wife, my role changed dramatically to that of carer. I also decided early to continue working as much as possible which helped me get a break, think about other things, and enjoy normal kind of conversations. This may not be you, but for me even though I was physically tired most of the time, it worked. As I work in a hospital, it was always easy to find someone far worse off than us, so that was very grounding.
We had 2 false alarms and then finally the transplant. These are difficult. Our first dummy run came after 18 months so of course we were very excited. We were quite disappointed, and my husband began to feel quite low, this did not improve with the second dummy run. It was difficult to keep his spirits "up" after that.
As the mum, I was also the person dealing with all the emotions of other family members too. Make sure you try and do things for yourself...anything...go window shopping, go for walks...have long showers, baths....
The transplant was quite straightforward and we have had little complications. After about seven days, the husband I remembered from five years before began to emerge, so thankful to be alive, and really began to work hard on his recovery.
Within two weeks he was well enough to go home. Within a month he was feeling energetic and euphoric. Within three months he was working three days a week. Friends and family cannot believe the change, it is truly a miraculous surgery.
The gratitude my family feel towards the transplant team cannot be put into words. My husband has been carefully monitored and looked after wonderfully.
Some words of encouragement- the end of your story has not been written yet... so try not to imagine what it will be... live day by day... things change.... I never in my wildest dreams expected my husband to be so well again and if it all went wrong tomorrow I am so grateful to see him come back to us and enjoy his life again.