3 weeks post liver transplant: when will I feel better?

I am 7 months out post liver transplant - related to my history of ulcerative colitis. It all happened very fast, though it felt slow at the time. I'm 54. I can remember the very early days - I was in the hospital for 2 weeks post transplant, returned home for VNA services. I was hugely swollen and thought it would never end. Within 2 months I shed all of my water weight (55 lbs!!) and as it was coming off it was much easier to move, so I began taking walks and it came off even faster. I kept reminding myself, when I was acutely discouraged, that I was no longer yellow, and it ended my hepatic encephalopathy episodes which were awful. I still feel even better but I am getting my physical strength back etc. I've made it a point - mostly for emotions which can be intense -- look at what we've had to cope with and what continues to await us! -- I get outside everyday and exercise each day and it helps with my mood. I also make sure I call or write a friend each day to keep myself in the world. Illness and recovery can be very lonely and will bring us to our knees at times. My post transplant nurse reminds me "give yourself some grace" when I am feeling discouraged and this simple message is grounding to me. So, please give yourself some grace in these early days, it gets so much better.

Good morning msfins. I’m not sure we can ever determine what the reason is for our gift. I just know that I need to begin to focus on things that I can eventually do to help others - either through volunteer work, or picking my career back up - with a new focus.
Fortunately for me, those down days post-transplant have receded as I continue to feel better. Music really helps my mood - and I’m even able to show my family some of my favorite dance moves - despite limitations on twisting! We just laugh at the silliness and the endorphins start to take over. I even dance on Zoom for the kids.
I recommend you think about what activities make you feel good - and just try to engage in them as best you can - while your body heals. When I was first post-transplant - I never thought my life would be the same again. What I am finding is that it is definitely different - but my perspective has been broadened. In a crazy way - it’s been very impactful on how I plan to live my life going forward - with gratitude for every single day - and thankfulness for my donor’s ultimate gift.

Hello,
I am a kidney transplant recipient (just over 2 years) but I wanted to reach out because I remember feeling so many of the things you describe. Transplant is pretty traumatic on our bodies. It is life-saving and miraculous AND scary. It is okay for it to be many things, simultaneously.

A couple of thoughts:
1) I believe this is true of all transplant patients (not just kidney) - the anti-rejection meds start at very high levels and then are reduced, when concerns of rejection begin to ebb. For me, many of medication side-effects began to decline, as the doses were reduced. As I recall, at 3 weeks, anti-rejection drug levels are still pretty high. Keep the faith, and also communicate to your transplant team any side effects you are dealing with. I remember explaining I was having cramping and diarrhea, thinking this was just the way I was going to feel from now on. Only to be told that those symptoms indicated meds should be reduced. They reduced the meds, and my symptoms disappeared. Your team knows what the symptoms mean, we do not. So make sure you communicate.
2) Transplant is a major surgery. All surgery is traumatic to the body. The fact that our bodies have to process this trauma, after dealing with the trauma of organ failure (the reason we needed the transplant to begin with) means our bodies are going to need some extra time to recuperate. Try to avoid the voice of fear telling you "This is it, for the rest of my life."
3) I recommend physical therapy, when you are further down the road of recovery. I experienced a lot of muscle atrophy during kidney failure and then after transplant. I did some PT about 4-6 months after transplant, which helped me regain some of the strength I had lost.
4) I lost some nerve sensation on my belly and down my left thigh. It bothered me for awhile but now I am used to it.
At two years post-transplant, I do stair-climber (20-25min) and weight lift at the gym 3 times a week. I can hike for about an hour (working on building more stamina). I swim and take pilates or yoga about once a week. 3 weeks after transplant, none of this felt like a possibility. Keep the faith, and stay focused on resting and allowing the body to recuperate and the mind to heal.
Blessings

@msfins, My annual eval was amazing! I had a hunch that it would be good because my routine labs have been good. Will you be having a 4 month check-up? I don't know whether all transplant centers do that.

I had a simultaneous liver and kidney transplant in April 2009 due to Primary Sclerosing Cholangitis (PSC) and sudden kidney failure (Hepatorenal failure) I was on dialysis for 5 weeks prior to transplant. My surgery went well, and I had a normal recovery with no upsets. I needed to put on weight and regain muscles after transplant due to my rough pretransplant period. I worked on walking distances, and at 9 months after my surgery, I was strong enough to do some easy hiking with my husband in the Great Smokey Mountains. This was a terrific accomplishment because it marked my return to normal although my endurance was not yet up to par.

As for the abdomen, I no longer notice the numbness. It really bothered me at first because it just felt so odd.

@msfins, How are you doing with sorting those meds and keeping on a medication schedule? What makes a day a good day as opposed to a bad day that you mentioned in a previous post?

Hey Rosemary. Thank you so much for reaching out. My face is still very puffy so that hasn't gotten better. And my mental state has been affected alot lately. My color is back to normal. The leg swelling seems to be getting better as of today. The abdomen area still feels uncomfortable. How long until your abdomen felt better? Did your feeling ever come back or is it still numb? How did your evaluation go?

I'm glad to talk to people who actually understand the journey this is. And I appreciate everyone's advice.

Hey thank you for that. I'm so glad you understand. My family said the same things about "hasn't she suffered enough" transplant is definitely no joke and I just wish I had more information on what it would be like after. Especially the mental affects. I would love to meet you but unfortunately I live in New Jersey. But maybe someday! I think itd be nice to be around others who understand how difficult this journey is.

Thank you for that. It is a very powerful thing. I no we all got this gift for a reason. I never doubt that. I just need to work on focusing on that reason as well and try to ignore my negative thoughts. What do you do when a negative thought pops in your head? Or if you're having a bad day?

@msfins, Please accept my belated Welcome to Connect. Congratulations on your new transplant! It is now 5 weeks since you received your new liver, and I hope that you are feeling some relief from some of the swelling and side effects of the new medications. As others have said - it can take time for your body to adjust to the powerful new meds that are needed to protect your new liver. Part of that adjustment is also dealing with the emotional part of waiting, getting sick, and then surgery and recovery.
I'm glad you found Connect and have received such good support and ideas here from others who are like you. I agree that our well-meaning friends can make us feel guilty when we don't conform to the Hollywood version of patient recovery.
My transplant was 13 years ago. I was at Mayo MN for my annual evaluation when you began this discussion. I was reading and cheering at the fantastic support and sharing by members who have so generously told of their experiences. I hope that this has helped to put recovery into perspective. I hope that you are already feeling better as your body is adjusting.

Are you feeling any improvements? And is that facial puffiness going down?

Hi @msfins, this is Gerry P’s wife. I would like to emphasize something you said, which is that you thought you’d have the transplant and everything would get better. I too had that assumption and as a result found the complications that followed his surgery really hard to deal with. “Haven’t he already suffered enough?” “Is this going to be the way the rest of our life unfolds?” We are relatively young and this last question really weighed on me and made me incredibly anxious. The advice of another transplant wife really helped me, so I’m passing it along. She said to think about all the trauma the body goes thru in receiving a transplant. It just takes time for everything to settle back down and heal. It takes time to get the meds sorted out. Thinking longer term about his convalescence and lowering my expectations for the short term really helped. Also allowing myself to acknowledge the grief and fatigue and just sitting with it for a while. It takes such stamina to get to transplant- give yourself the gift of time on the backside too. Best wishes for a steady upward recovery. Lynne
Ps- Gerry really is doing so much better at the 3 month point. If you’re in the Jacksonville area, we’d be happy to meet.

Good morning msfins. I am just 3 months post transplant, and had several setbacks following my procedure. I spent most of the following 6 weeks in the hospital and had 2 additional surgeries. It’s easy to fell depressed - I know I did, both pre & post transplant. Since I couldn’t concentrate very well, I found listening to music off my iPhone was relaxing & uplifting. Even the nurses enjoyed it when they would come into my room.
But the most powerful comment that helped me feel better came from a chaplain who visited me both pre & post transplant. Fr Charles said that the gift of a new liver was proof that my time on this Earth was not done, and that this gift was provided so that I could fulfill my mission here on Earth. Powerful stuff if you think about it. I found that the comment made me focus on the future while I try to determine what my mission is. It changed my frame of reference from one of despair to hope for the future.
GerryP