Liver Transplant

@hogan_g1937, I would like to welcome you to Mayo Clinic Connect. This is a good question and you have come to the right place to meet and learn about the experiences of other liver transplant recipients. I want to first, congratulate you and your husband for his strength and endurance that it must have taken to reach this milestone of being listed for a transplant.

I am a transplant recipient (liver/kidney 2009). My call came at on a Wednesday at 6:42 AM. We reported to the transplant area and the nurses were waiting to admit me. I first had a short dialysis session and was visited by Nephrologist, Liver transplant surgeon, chaplain, and anesthesiologist. They answered questions, reassured me, and explained everything they would be doing. When I was returned to my room, the nurses took over with the preparation and the pre surgery paper work and vitals. My husband was with me for most of this. I remembered feeling that time was moving very fast, and I did not have time to worry. In fact I felt amazingly calm at how smoothly everything was going, and how 'in control' the transplant team was. It was obvious that they had done this before:-)
At 1:10 (last time I saw a clock) I said 'goodbye' to my husband and was rolled to the surgical unit. Outside the door, I was presented with a surgical hat, the doctor called it my party hat. I remember there were so many people in that room, and each one introduced him/herself to me. Then the anesthesiologist re-introduced himself and asked if I had any questions since our earlier visit. I said 'no'. I heard him say 'lets get started'. I felt like the room was swaying...and...then....I was aware of people quietly talking and they told me that my surgery was over, and it went well. They changed some tubes, and brought my husband, and sons in to see me. I knew that I was not dreaming when one son called out, "Mom, you're not yellow anymore!" There was a lot of activity with scans, monitoring, and I don't recall mush else.

On Thursday, sometime, I was rolled to my room in a wheelchair with a vanilla milkshake and helped into my bed.

The next day (Friday), I was able to eat a light breakfast, and they had me out of bed and walking-slowly and with help.

I had a pump so that I could administer my own pain meds. I also had some physical therapy as I regained strength and muscles. There were also more scheduled scans and labs and medicine changes as I adjusted to my new organs.

My hospital stay was a very brief 7 days. Then we returned to our lodging at Gift of Life House in Rochester, to continue as out patient.

This is only my experience. Remember that each of us is different, and each has different conditions, and reacts differently. I do hope that this helps a little to relieve some fear and anxiety. We are here anytime you want to ask any questions.
I look forward to hearing from other liver transplant recipients about their experiences.

Hugs and Hope,
Rosemary

Hi Hogan, I'm tagging a couple of other members who are liver transplant recipients, @davidgenebarnes and @contentandwell, who can share their experience of surgery, recovery and after care with you. As Rosemary said, everyone is different. But hearing several accounts can help you prepare for your husband's care.

@hogan_g1937 First, I am tremendously impressed at the clarity of @rosemary memories! I remember getting the call sometime in the vicinity of 12:30 pm, feeling very calm, and grabbing my bag which was already pretty much packed, and going. Both my husband and I were very calm. I was remarkably well up until the last month and a half prior to transplant and then things went downhill so I was just relieved that soon I would be doing better. The call came more than a month earlier than I had been told would be the earliest I would be called, so we were stunned when it did. Looking back on the trip to the hospital it seems almost surreal.

We got to the hospital and from there on in things are a blur to me! Many people checking on me and so forth. The surgeon who was to do the surgery visited us (this was mid-afternoon) and said the surgery would be much later. My husband asked him what he was doing then and he responded that he was going home to take a nap! We were glad he would be well rested. I was in a room in the transplant area and then the time finally came when they brought me to the surgical unit. I remember nothing from then until after surgery. I do know no one brought me a milkshake!

Of course I was tired and the pain medications tend to really make me more so I slept a lot. I did have some pain while in the hospital, particularly the first couple of days. I don't remember the pain as much as I remember saying I was in pain. I could not administer my own medications but at one point when I was in pain and distraught a nurse came in and chided me for not calling her. She immediately brought me some pain medication. So if the transplant center your husband is at is like mine (MGH) make sure he lets them know if he needs more pain medication. Do you mind saying what transplant center he is listed at?

My surgery took place at 12:30 A.M. on a Friday, and I was released the following Thursday. The surgery took 7.5 hours and I discovered afterwards that there were actually 3 transplant surgeons in there! Once home I had to take it easy of course and my husband did a lot to help me. I generally do recover quickly so I was able to be up and walking around the house in a relatively short period of time. I intended to keep a journal of all of this but that went by the wayside, something I regret.

I had in-house PT for a few weeks, maybe a month, I forget exactly how long. If you are on Medicare that is a provided service as long as you are home bound. If you start going out the PT has to end. Then you can go to outpatient PT until you get back to speed with and in better shape. I was not supposed to drive as long as I was on pain meds -- that gave me an incentive to get off of the medications because I do not like being dependent on others. I think there was another restriction that I was not supposed to drive until my incision was pretty well healed but I am not sure of that one. Speaking of incisions, some people have minor discomfort from the incision for quite a while afterwards. My incision discomfort only lasted a couple of weeks.

From there things proceeded very smoothly. I know from what I have heard at the post transplant clinic that my recuperation was better than typical. The first post transplant visit, a week after I was discharged from the hospital, they were surprised at how good I looked and commented that many patients come in in wheel chairs, some even on stretchers. So how a patient is doing at that point can run the gamut.

If you have any specific questions please feel free to ask. If I can't remember I will ask my husband, he may remember things better than I do.
JK

Thanks so much for the insight of your experience. Praying for continued good health. My husband is listed at Houston Methodist Medical Center. They have been truly great with his care. He is being treated for the liver cancer now and was told that due to the liver cancer he has been bump up on the list. Still looking at a year. As far as his ESLD he has been doing really well with a low MELD Score. I feel that if they have cured the cancer and he continues to do well as he has been for the last year the transplant maybe put off even longer. He was given 3 months and it will be three years in 2/2018. He is in a lot of pain always but manages to keep going. Thanks again for sharing you story and experience.

Thanks so much I am just praying that my husband experience will be as good as everyone that has replied. He is doing good now just lots of pain but thank God he has not been admitted to the hospital in over a year with HE episodes. Thanks again for sharing your experience.

@hogan_g1937, Your husband sounds like an amazing man with his strength and determination. I hope and pray that treatment is successful, and that a transplant is soon.
For me, the hardest part was the time before the transplant while I was enduring all of the ESLD symptoms. My husband and I had planned for every scenario for what to do when I got my call - but when I did get the call, my mind went completely blank! So it was my dear husband, who got me pointed in the right direction. Your husband is fortunate that you are there for him:-)

I was asked to write about the time leading up to my transplant. I want to share it, maybe you and he can find something helpful, or maybe you might have some ideas of your own to share. https://connect.mayoclinic.org/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

How are you holding up to all of this?
Rosemary

Hi Rosemary, I am holding up good I think it's because he has not been sick in a while and no hospitalizations in over a year (yeaaaaa). However he has a bad gall bladder that is to risky to remove now and a hernia that keeps him in pain daily. Glory to God it could be worst. I thank God that he is doing as well as he is. The liver cancer scared me because I was told and have read that if the cancer spreads there will be no transplant. Praying that they got the cancer with the chemotherapy embolization a week ago today. So glad I found this sight. It makes me feel so much better and less worried when I hear such amazing stories. Thanks again for sharing your story with me. Beautiful picture!!

@hogan_g1937, You sound like my husband! He says that if I'm okay, then he is okay, and especially the no hospitalization part:-)
When will you know if they got the cancer?
Thanks for the compliment.
I once met a man in the lobby at Mayo, who was waiting to get his results about his liver cancer treatment. Then, I ran into his wife a few weeks later in the elevator, and she was ecstatic and told me that he had received his transplant. Miracles do happen in the transplant world!

As an FYI - I want to point out a part of Connect called, Pages. You might find the Transplant Pages of particular interest. There is a variety of featured articles about all kinds of transplant topics, including liver transplant, aftercare, and individual success stories. It is easy reading, short, and informative. https://connect.mayoclinic.org/page/transplant/

Sending you hugs, hope, and prayers.
Rosemary

Thank you, I will check out the articles. Sending blessing and continued good health your way.

@hogan_g1937 I too had malignant lesions in my liver, they were taken care of by ablation. For me also, liver cancer increased my MELD score. I presume you go higher because they want you to have the opportunity for a transplant before a recurrence of any malignancies. I am trying to remember exactly when the ablation was, I believe it was in June of 2015, and I was transplanted in September of 2016 with a MELD of 28. I am not really certain of this but I believe the MELD only gets updated every three months but that the transplant center does have some discretion in deciding who will get a liver. I had gone downhill quite a bit so I think that may be why I did get the liver with only MELD 28, in Boston the MELD score is generally in the 30s before a transplant takes place. After transplant I found out that when they dissected my liver it was pretty much spent. The other variable though is blood type -- A, AB, and B generally get transplanted at a lower MELD and I am type B. I guess that's because a type O liver can go to anyone whereas the other types have to go a person with the same blood type.

I can't help but notice that all the people who are waiting or have had transplants are very happy with the hospital they have dealt with. I think the people in the transplant departments must be very special in caring for their patients, I know that they were at MGH. I was in there again in December with an unrelated condition but they put me in the transplant unit because having been a transplant recipient makes a person need special consideration. Some of the nurses remembered me, more than a year later, and they were all just as nice as they had been when I was there following my transplant.
JK