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

@rith, Regular sized clothes were my first desire after my transplant! And comfort is always my priority, too. I did have PT and OT in the hospital before my transplant, and also afterward. Walking is the best and I can remember my walks in the hallway around the nurses station with my walker while my PT (and eventually my husband) managed the wheeled IV pole. Last week I was hiking with my husband, we did 21 miles of trail in the Great Smoky Mountain National Park. Life is good!

I want to invite @danab who also had CMV since his heart transplant. Perhaps Dana, has something add about the tiredness that you are experiencing. And BTW, he is a daily walker!

Yes it’s so nice to wear regular clothes again although now I wear super comfy ones. I tried to wear spanx years ago when I worked in retail and sold womens clothing. Way to tight then and now I wouldn’t even try! After my transplant I felt like I had a tight rubber band around me and couldn’t stand to have anything touch me. I finally went to physical therapy and the therapist worked on the scar to help make it less sensitive. Also worked on building back strength in my legs. I would highly recommend physical therapy.
I did talk to my team about the tiredness and they think it’s the meds. I had 2 bouts of rejection plus cmv the first year so my meds were kept pretty high.

Welcome to Connect, @rith. Congratulations on 4 years of living and returning to a new normal after your transplant. Your story of a difficult pretransplant journey is familiar to me. (liver and kidney 2009) I want to thank you for sharing your memories and I commend you for your successful return to health.
It's a treat to be back to regular clothes, isn't it! I do remember a conversation that I heard where some transplant gals were discussing Spanx type of undergarments as their remedy for the abdominal bulge. I have not had much of a bulge, but I found them uncomfortable. There are some comfortable athletic bras on the market, too.

I used to need a daily nap. Now I find that if I am really active for a few days, that I know that I will need a nap to recover. In fact that's what I did yesterday afternoon! I treated myself after spending 4 days last week taking day hikes in the Great Smoky Mountains.
Ruth, have you discussed your tiredness with the transplant team? Sometimes meds or particular low lab result can be the culprit. I did need to take supplement iron for a few years.
How do you spend your days? What do you enjoy doing?

I had my liver transplant 4 years ago. I had also been thin all my life, after transplant I was on so many iv’s and medications. I was so swollen I could barely get my pants on, and could not get shoes on at all. Best thing to do is walk. I remember walking for short periods but often in the hospital. I was very weak after and recovery took time. The weight and all the extra fluid came off and my shaky hands finally got better too as the prednisone got reduced.
I’m back to my regular size clothes, although I now have a tummy that I did not have before and trying to find a bra not feels ok is next to impossible. I still take a nap most days and just don’t have the same level of energy I had before, I’m age 65.

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.

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.

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.

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?

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.

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.