Post Transplant Surgery and Early Recovery: What's normal?

Posted by btwest6 @btwest6, May 2, 2020

My husband is 12 weeks post liver transplant and has from day one had “hot flashes”, where he gets flushed (face gets red) and feels warm. We take his temp and he is normal. Anyone else with this experience? This new phenomenon seems to be one of the few new things he’s noticed. Otherwise feeing very good!

@loungingsofa70

It has know been 3 months since my liver transplant on 23rd Feb 2020. I'm not feeling any pain resulting from the operation except in my back on the right hand side, however I get very worn out after only walking short distances i.e.2000 steps and I can become a little breathless. I do some exercise everyday as advised to do so but after it I generally have to have a rest. Is this a common feeling from other transplant patients ?

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@loungingsofa70, Welcome to Mayo Connect and Congratulations on your recent livertransplant! I requested that your question be moved to this discussion because this is where other new transplant recipients will be more apt to see and to relate to your situation. I encourage you to read thru what has been posted so far by other members.
My transplant was 11 years ago, and I remember that I got tired easlily, and napped daily.

I want to invite other newly transplanted members to this conversation.
@btwest6, @gphetteplace, @tjgisewhite, @jsw, @michaelswaim, – Have you had an experience similar to @loungingsofa70 that you would like to share?
How are you doing since your transplants? Any updates?

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@loungingsofa70

It has know been 3 months since my liver transplant on 23rd Feb 2020. I'm not feeling any pain resulting from the operation except in my back on the right hand side, however I get very worn out after only walking short distances i.e.2000 steps and I can become a little breathless. I do some exercise everyday as advised to do so but after it I generally have to have a rest. Is this a common feeling from other transplant patients ?

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Hi, @loungingsofa70 Welcome to Connect.
I am about 3.5 years post-liver transplant. I do remember being very tired initially but I think I started feeling less tired at around the 3-month mark. I am presuming that to be so because I know that is when I returned to my health club for water aerobics.

What I have found from other liver transplant patients with whom I have connected online is that everyone seems to have different experiences. Some people recover amazingly well in a very short amount of time, some people take a year or more to feel like themselves. For me, being positive helps.

Have you spoken to your transplant team about the right-sided back pain? If not I would at least mention that to them. It's always good to let them know anything that's going on. I found out just how much symptoms that seem unrelated can be indications of other things that you would never think of, when I was pre-transplant so now I try to be conscious of everything. Still, I have trouble with that though. Right now for instance, I am having a problem that I never imagined would be caused by a medication, and I just discovered that it is.
JK

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@loungingsofa70

It has know been 3 months since my liver transplant on 23rd Feb 2020. I'm not feeling any pain resulting from the operation except in my back on the right hand side, however I get very worn out after only walking short distances i.e.2000 steps and I can become a little breathless. I do some exercise everyday as advised to do so but after it I generally have to have a rest. Is this a common feeling from other transplant patients ?

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@loungingsofa70 hi there! I am 18 months post transplant (liver). It took me a year to start to feel relatively "normal". I joined a gym at 13 months post transplant as that is when I felt able to do more. Prior to that I had fatigue, loss of appetite, insomnia and sore joints. I'm now stronger and much more confident. I thought I would never get better. If I had not been proactive and just waited I may not have had any progression. My mantra..You can do this…and I did. After all we've been through we must continue to fight for our well being. I still have complications (I'm due for surgery ERCP again June 15). But I'll go into this prepared. It takes everyone to know their own bodies and what they're capable of. We all recover at our own pace in our own time. Chin up!!

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@loungingsofa70

It has know been 3 months since my liver transplant on 23rd Feb 2020. I'm not feeling any pain resulting from the operation except in my back on the right hand side, however I get very worn out after only walking short distances i.e.2000 steps and I can become a little breathless. I do some exercise everyday as advised to do so but after it I generally have to have a rest. Is this a common feeling from other transplant patients ?

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Hi! I had my LT the week after yours. I’m feeling about the same. I’ve had pain under/below my ribs on my left side (front and back) that feels like a pulled muscle. They confirmed it wasn’t a hernia. I’ve also had episodes of fast heart rate (185 BPM) which were accompanied by shortness of breath, so I’m keeping an eye on my vitals. The doctor said my heart muscle is fine (my EF is 70, great for a 61year old) and it was probably just that I was deconditioned, which makes sense because I was very sick and very sedentary before the transplant. It has improved over the last few weeks. Hopefully we just need to keep working on our endurance! I feel sooo much better with the new liver I’m impatient to start some aerobic exercises. I’d love to hear your progress!

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@loungingsofa70

It has know been 3 months since my liver transplant on 23rd Feb 2020. I'm not feeling any pain resulting from the operation except in my back on the right hand side, however I get very worn out after only walking short distances i.e.2000 steps and I can become a little breathless. I do some exercise everyday as advised to do so but after it I generally have to have a rest. Is this a common feeling from other transplant patients ?

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My husband had his transplant (liver) on 2/9/2020. We have found that bike riding is a good activity for us. It seems like his stamina is greater for that than walking, but still gets us out and moving. I feel like the key is to remember that recovery comes more quickly for some than others and that patience with yourself having just come through major surgery is important. Some days are great and others are fair. All are better than before transplant.

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@btwest6 Good evening. Congratulations to you and your husband on his successful liver transplant. Where did he get his transplant done at? I had my liver transplant done at the Mayo clinic in Jacksonville, FL on December 16, 2019.

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He got his transplant at Mayo Rochester. The day of transplant it snowed over 10”!

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@mpow00

I was given the most precious gift 3 weeks ago with a new liver. I’ve been recovering very well but have some questions on a few things.
For starters, when is the average time where you felt comfortable enough to drive yourself to the store? I still have numbness in my abdomen and can feel it, more on the sides, if I accidentally use my abs or twist incorrectly.
Also, for those of you who are side sleepers, when were you able to sleep on your side? I’ve been sleeping on my back the whole time and it’s become a bit bothersome.
Lastly, has anyone had to be retransplanted? While my bloodwork indicated amazingly good numbers, all normal, my bile ducts don’t have the proper flow that they should. I’m being watched closely and my fantastic team in AZ is ready to intervene if needed. I’m a bit nervous about the thought of doing this rodeo again. However, I will be a pro at it if I need to have another transplant!
Any help would be fabulous!
Thanks!!

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@mpow00 hi there! Congratulations on your surgery! I am 18 months post liver transplant. Everyone "recovers" at different times. You may get impatient but go slow and let your body guide you. After my initial surgery they had to open me back up. I had just had the staples removed and then I had to be stapled back up again.
I think I was ready to drive about 6-7 months post surgery. I still have numbness across my abdomen and don't expect to ever get any feeling back. I still get a sharp pain every now and then when I twist my abs. (pain on the right side on the incision site) even though I have been at the gym working out since Jan 2020 then at home. I found sleeping on my back painful and am a side sleeper. In hospital I was in agony with back pain. I started experimenting on my side after the staples were taken out. I would prop my pillows behind my back and lie half on my side leaning back onto the pillows. A long body pillow would work great. As for the bile duct..well..mine was blocked and I've had 4 ERCPs (procedure to insert stent). 2 failed and 1 they inserted a plastic tube which led to the 4th procedure when a metal stent was inserted. I contracted pancreatitis all 4 times which is debilitatingly painful. Each ended in a week + hospital stay. I'm booked to have this metal stent removed June 22nd. I'm praying for a successful outcome without pancreatitis. Unfortunately these procedures held my recovery back by at least 6 months.
My story is just that, my story. Some people recover at a faster rate others slower. Praying that your recovery is a speedy one.

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I was given the most precious gift 3 weeks ago with a new liver. I’ve been recovering very well but have some questions on a few things.
For starters, when is the average time where you felt comfortable enough to drive yourself to the store? I still have numbness in my abdomen and can feel it, more on the sides, if I accidentally use my abs or twist incorrectly.
Also, for those of you who are side sleepers, when were you able to sleep on your side? I’ve been sleeping on my back the whole time and it’s become a bit bothersome.
Lastly, has anyone had to be retransplanted? While my bloodwork indicated amazingly good numbers, all normal, my bile ducts don’t have the proper flow that they should. I’m being watched closely and my fantastic team in AZ is ready to intervene if needed. I’m a bit nervous about the thought of doing this rodeo again. However, I will be a pro at it if I need to have another transplant!
Any help would be fabulous!
Thanks!!

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@mpow00

I was given the most precious gift 3 weeks ago with a new liver. I’ve been recovering very well but have some questions on a few things.
For starters, when is the average time where you felt comfortable enough to drive yourself to the store? I still have numbness in my abdomen and can feel it, more on the sides, if I accidentally use my abs or twist incorrectly.
Also, for those of you who are side sleepers, when were you able to sleep on your side? I’ve been sleeping on my back the whole time and it’s become a bit bothersome.
Lastly, has anyone had to be retransplanted? While my bloodwork indicated amazingly good numbers, all normal, my bile ducts don’t have the proper flow that they should. I’m being watched closely and my fantastic team in AZ is ready to intervene if needed. I’m a bit nervous about the thought of doing this rodeo again. However, I will be a pro at it if I need to have another transplant!
Any help would be fabulous!
Thanks!!

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Hi @mpow00, I'd like to add my welcome along with @gaylea1. MPow, you'll notice that I moved your message to this related discussion where people are asking questions post transplant. Here you'll meet @jsw @btwest6 @gaylea1 @gphetteplace @loungingsofa70 @jerrynord @michaelswaim @rosemarya @contentandwell and others. I'm confident that they will have thoughts to add about driving, side sleeping and watching the bile ducts.

You may also be interested in these discussions:
– Liver transplant support group https://connect.mayoclinic.org/discussion/liver-support-group/
– Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

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@mpow00

I was given the most precious gift 3 weeks ago with a new liver. I’ve been recovering very well but have some questions on a few things.
For starters, when is the average time where you felt comfortable enough to drive yourself to the store? I still have numbness in my abdomen and can feel it, more on the sides, if I accidentally use my abs or twist incorrectly.
Also, for those of you who are side sleepers, when were you able to sleep on your side? I’ve been sleeping on my back the whole time and it’s become a bit bothersome.
Lastly, has anyone had to be retransplanted? While my bloodwork indicated amazingly good numbers, all normal, my bile ducts don’t have the proper flow that they should. I’m being watched closely and my fantastic team in AZ is ready to intervene if needed. I’m a bit nervous about the thought of doing this rodeo again. However, I will be a pro at it if I need to have another transplant!
Any help would be fabulous!
Thanks!!

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@mpow00, Congratulations on your transplant and your ongoing recovery. At three weeks, you are still healing and your body is adjusting to your new liver and the high doses of medications. Numbness is normal, and does feel strange at first. Over time you will not notice it. I am 11 years post transplant, and I had to refer to my take home booklet about driving. It looks like 6 weeks is the time listed for driving. However, a lot will depend on how you feel and whether your medications are affecting you. In the beginning, I was very weak due to being very ill before transplant. When I was on high doses of my antirejection medications, I had a difficult time with concentration and focus, so I chose not to drive for a longer time.
As @gaylea has already shared, pillows make wonderful padding and props. I even found the couch more comfortable than my bed because I could pillow-and-prop up against the back of the couch.

How is the team monitoring your bile duct flow?

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@mpow00

I was given the most precious gift 3 weeks ago with a new liver. I’ve been recovering very well but have some questions on a few things.
For starters, when is the average time where you felt comfortable enough to drive yourself to the store? I still have numbness in my abdomen and can feel it, more on the sides, if I accidentally use my abs or twist incorrectly.
Also, for those of you who are side sleepers, when were you able to sleep on your side? I’ve been sleeping on my back the whole time and it’s become a bit bothersome.
Lastly, has anyone had to be retransplanted? While my bloodwork indicated amazingly good numbers, all normal, my bile ducts don’t have the proper flow that they should. I’m being watched closely and my fantastic team in AZ is ready to intervene if needed. I’m a bit nervous about the thought of doing this rodeo again. However, I will be a pro at it if I need to have another transplant!
Any help would be fabulous!
Thanks!!

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We live in a very small town with no traffic. No stop lights. My husband drove the few blocks to the store at about 5 weeks post transplant. Longer drives (such as several hours) we still share driving or I drive because driving causes him to have dry eyes and he is a little less confident in areas that are unfamiliar than he used to be.

After the staples were out and drains were all out and a couple of weeks of healing…maybe around 4-5 weeks post transplant he was able to get comfortable on his side. We also added a 4” foam topper to our bed, which helped a lot!

We are hoping this transplant lasts his lifetime! Hope not to ever do it again, so going to take meds on schedule and do everything in our power to make it last. If it ever comes to that—we know God will give us the strength when we get there, but try not to worry now. We are ready to live again!

Hope you are healing well.

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