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

@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?

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

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.

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.

Thank you Kate. It definitely is lonely and brings me to my knees. Its even hard to describe to my family or friends cause even though they are there for me, they can't begin to imagine what its like. I do need to be reminded to give myself grace, so thank you. It's like I get down and depressed and cry then I get mad at myself for feeling that way cause I have a second chance at life. Like ive said before, its so nice talking to people who are actually going through or been through this as well.

Before my liver transplant I broke my T12 vertebra, followed by a fall that broke my hip ball, which was followed by a transplant Like dominos falling. When I went into for transplant in May I still had stitches running down my leg. After surgery I was very frail, could not hold a phone or book. When I was released after tons of therapy I weight 100 lbs and had no muscle tone. It took many many months of additional therapy, lots of walks and exercise and a healthy diet. I just kept at it. From the time I arrived at Mayo with the broken back in January to I left in late June I had spent almost 6 months there. It took a tremendous toll. Just keep working at getting stronger. Because it will get better! We all have been given a great gift.

Hey @lynnecp, I wanted to pop in and say a belated welcome. It's great to have both you and @gerryp taking part in the discussions in the Transplants group as caregiver and transplant recipient.

Lynne, I bet you'd have some great tips to add to this discussion:
- Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

How are you doing today? It's almost 4 months post transplant?

Good morning. I’m doing GREAT! My 4 month anniversary is June 28th. I have a week of tests at Mayo, and hopefully will begin tapering off some of the drugs I am on.

I never thought I would ever feel this good again. My transplant support friends always assured me I would, but it’s hard to believe when you are so sick, and exhausted from liver disease.

So for all of those still waiting transplant - please know that a liver transplant is an absolute miracle! You will regain good health post-surgery.

Except for my husband my family virtually abandoned me before and after transplant. My parents had died. My in-laws were suspicious and stayed far away. My siblings thought having HepC was nothing to worry about. Even after the transplant they became even more distant. They had no understanding of the toil a transplant takes on you both mentally and physically. They have chosen not to understand. I live with this every day. Be thankful for those who support you.

My pre- and post-transplant course was filled with every complication in the book.
Having said that, my worst day post transplant beats my best day with end stage liver and kidney disease.
I’m by nature somewhat of an ingrate, as many humans are, so I have to remind myself that someone had to die to give me the gift of their liver and kidney. And then I also had to be referred to Mayo Clinic and be lucky enough to get into their program.
And then reflect on the twenty or so people who will die waiting for an organ today.
And then I feel what can be described as deep gratitude.
It’s very easy for me to get caught up in dealing with daily illnesses and other difficulties (e.g., insurance) and fall into an ungrateful funk.
Hope that helps.