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

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.

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?

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.

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.

Hi msfins Yes you will get better. I was in your place the first 2 months after my Heart Transplant. I remember one incident where my wife had left for her daily walk of her usual 3 to 4 miles and I really wanted to get some computer work done. We were staying at a hotel the first few weeks after transplant and feeling ok but everyday chores would wear me out. Anyway the laptop was in a suitcase on the floor of the closet (thank God for closet rails) and I was just going to kneel down and get this really light laptop and power cord. Well I got done there ok but could not get back up. My leg muscles were not strong enough yet and i used the rail you hang shirts on which was lower than the regular one at the top of the closet. Using my arms and legs I got back up. I never felt so weak in my whole life. Well that soon passed and my next challenge was I really wanted to be allowed to drive again but my wife was concerned that my leg strength would be a problem driving. So we set this goal and required me to be able to climb the stairs of our home and meet the 6 week requirements that my doctors had. Well my doctors required me to be off my pain killers ,which is another story, so Doctors are happy but the stares also I would start with 3 or 4 steps a day and each week get a few more. By the end of 4 weeks I made it up the 13 steps of my stairs. BTW we had left the hotel near Mayo at 1 month past transplant so by the 7th or 8th week I was back upstairs and in my own bed plus driving again. So progress at that point got faster and faster by 6 months I was walking 2 to 3 miles again and playing Golf. I'm 4 years post now and there is nothing I can say I can't do. I feel completely normal which I have been for the last 3 years.
I might add the bloating is a problem at first and I was on a water pill for probally 2 years post transplant but haven't needed it since. I try to stick to a Mediterranean Diet and watch my salt to under about 2500 MG a day. Not always successful but i do try. I hope I inspired you to hang in their. BTW I was 59 when I had the transplant and I'm 63 now But I do believe my Heart is much younger since I want to be on the go but some parts of my body make me slow down. 😆 mostly muscles. I walk 3 to 4 miles a day and work out in the gym 3 to 4 time a week. Let me know how your doing as it seems your about 6 weeks now if my math is correct?
Blessing from Dana

Hi msfins Yes you will get better. I was in your place the first 2 months after my Heart Transplant. I remember one incident where my wife had left for her daily walk of her usual 3 to 4 miles and I really wanted to get some computer work done. We were staying at a hotel the first few weeks after transplant and feeling ok but everyday chores would wear me out. Anyway the laptop was in a suitcase on the floor of the closet (thank God for closet rails) and I was just going to kneel down and get this really light laptop and power cord. Well I got done there ok but could not get back up. My leg muscles were not strong enough yet and i used the rail you hang shirts on which was lower than the regular one at the top of the closet. Using my arms and legs I got back up. I never felt so weak in my whole life. Well that soon passed and my next challenge was I really wanted to be allowed to drive again but my wife was concerned that my leg strength would be a problem driving. So we set this goal and required me to be able to climb the stairs of our home and meet the 6 week requirements that my doctors had. Well my doctors required me to be off my pain killers ,which is another story, so Doctors are happy but the stares also I would start with 3 or 4 steps a day and each week get a few more. By the end of 4 weeks I made it up the 13 steps of my stairs. BTW we had left the hotel near Mayo at 1 month past transplant so by the 7th or 8th week I was back upstairs and in my own bed plus driving again. So progress at that point got faster and faster by 6 months I was walking 2 to 3 miles again and playing Golf. I'm 4 years post now and there is nothing I can say I can't do. I feel completely normal which I have been for the last 3 years.
I might add the bloating is a problem at first and I was on a water pill for probally 2 years post transplant but haven't needed it since. I try to stick to a Mediterranean Diet and watch my salt to under about 2500 MG a day. Not always successful but i do try. I hope I inspired you to hang in their. BTW I was 59 when I had the transplant and I'm 63 now But I do believe my Heart is much younger since I want to be on the go but some parts of my body make me slow down. 😆 mostly muscles. I walk 3 to 4 miles a day and work out in the gym 3 to 4 time a week. Let me know how your doing as it seems your about 6 weeks now if my math is correct?
Blessing from Dana

BTW how scary was a heart transplant for you? Learning I needed a liver transplant was beyond overwhelming and fearful. I can't even imagine a heart transplant.

@msfins -It will get better! I had a heart double lung transplant in April 2021. I was so weak I could hardly sit up on my own. When I was discharged from the hospital after 3 weeks I couldn’t hardly stand up on my own. I used a walker and had no strength. I started a journal the day I was discharged titled ‘small steps forward and smaller steps backwards’. At the end of every day I wrote down the steps forward-some were as simple as getting off the toilet by myself or walking down the hall alone. I also wrote down the steps backwards (leg swelling, tired, etc). The little accomplishments added up.
I also had terrible leg swelling-my legs were like tree trunks and I was of average weight and 5’4”. But with activity and lasix the swelling went down and walking and moving was much easier. I admit, I am competitive. So having short term and long term goals were also key for me. I bought a tshirt at Mayo that says ‘the comeback is stronger than the setback’ and went into full ‘comeback’ mode. There are tough days for sure, and setbacks, but I kept that journal every day for a year and by the end of the year the small steps forward greatly outnumbered the steps backwards each day.
I wish you lots of luck as you figure out what best motivates you on your journey to feeling better. My motivation was being able to ride my horse and travel again to see family and special events.
Hugs from Illinois!

Thank you so much for sharing. Your journal idea is awesome. My Chaplin friend I made at the hospital suggested something similar as well. Its always helpful hearing everyone's stories and how they got through everything. How are you feeling now? Have you been able to ride your horse yet?