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

Posted by msfins @msfins, May 15 8:47pm

I had a liver transplant 3 weeks ago because of an autoimmune disease. I don't feel like myself right now. My face is all puffy and swollen which I assume is from the high doses of steroids. I've always been a thinner person but now I feel so fat and that is weighing on me mentally. My legs are still swollen. If I keep them down for even a short time, they become heavy and make it hard to walk. Everyone keeps telling me to be patient but right now nothing feels like it'll get better. I guess I just stupidly assumed things would bounce right back and that frustrates me. Im so miserable and even becoming more depressed. I tell people that and they make you feel guilty for feeling depressed. I guess I'm just looking to talk to people who actually been thru a similar experience. I would like to know how things went for you. Did you have bad side effects to the medicines? Did you ever get depressed after? Do things actually ever go back to normal again? As far as swelling and water retention. When they lowered your steroids did you lose weight and puffy ness in ur face?

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Hi msfins…I'm so sorry for what you're going thru, but ecstaticly happy for your transplant. Remember you didn't get sick quickly, the recovery won't happen quickly but you've been given a miracle, the gift of life …a liver transplant. I'm 27 months post liver transplant and all for me is very good. Every transplant patient is different. Don't beat yourself up for the way you're feeling. It's an incredible journey you are on. My best advise is to stay in touch with your post transplant team…they are there to help you, and stay with a support group…nothing better than talking with someone whose already walked in your shoes. Blessed wishes to you!💚💚💚

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Remember, you are only 3 weeks out. I know we all hope that after the transplant we will be all better. It takes time, be patient with yourself. Talk to your transplant team, tell them how you feel physically and mentally. Your body is going through all sorts of things to heal itself. Maybe a change in medicine or a lower dose will help. Sometimes it takes an antidepressant to help clear your head. It doesn’t mean you will have to take it forever. Sit outside for awhile, take naps, don’t compare yourself to others, recover at your own pace. In time this will all pass and you will feel better and stronger. One day, you’ll realize you don’t remember those first few months of recovery – that’s because you are living your life!

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@msfins, it’s now 5 weeks post transplant for you, if I’ve calculated correctly. How are you doing?

@athenalee also had a liver transplant related to an autoimmune condition. May I ask what autoimmune condition you had/have?

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@colleenyoung

@msfins, it’s now 5 weeks post transplant for you, if I’ve calculated correctly. How are you doing?

@athenalee also had a liver transplant related to an autoimmune condition. May I ask what autoimmune condition you had/have?

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Its been a slow process with good and bad days. I've been struggling mentally dealing with everything. I have PBC with overlapping autoimmune hepatitis. Thank you for reaching out.

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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

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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.

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@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?

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@gerryp

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

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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?

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@lynnecp

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.

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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.

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@rosemarya

@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?

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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.

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@msfins

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.

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@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?

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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

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