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

Posted by btwest6 @btwest6, May 2 5:05pm

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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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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@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. It's great to finally be over that hurdle, on the other side and well again.

I was driving fairly soon after, but I really had an amazing recovery so I am not sure what is typical. I think that mainly depends on how you feel and if you are still on any pain relieving drugs that will impair your driving. Knowing I couldn't drive until I was off of the drugs gave me incentive to get off of them as soon as I could.

I never had numbness after the first week, nor did I have any discomfort from my incision. I have to credit my incredible transplant surgeon at Mass General for that. I am sure that the majority of transplant surgeons are wonderful but of course, I am biased.

I always preferred my side but I did adjust to sleeping on my back. It is something you can adjust to. I was on my back in the hospital so it just carried over.

I have encountered no problems since my transplant other than some effects from the medications. They had to change me from tacrolimus to sirolimus because it was causing an increase in my creatinine number, and the tacrolimus triggered lactose intolerance which I still have now on sirolimus. Initially, they had me drinking 80-100 ounces of non-caffeinated liquid a day but that didn't help enough.
Also, if you are on prednisone long-term as I am, be aware that it damages your bones. You should be active in trying to offset that so as to not develop osteoporosis, which I have.
JK

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@btwest6

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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@btwest6, Your husband is doing well and you are doing well as a caregiver. Me and my husband had reversed roles I was the patient, he was /is my caregiver.
As for remembering meds, I have set my phone alarm, have a weekly medicine organizer, and I always tell him that ,"I took my meds". This lets him know that did it since it gets easier over time to get busy with life and overlook the alarm,
During my checkup for my 10th year, I asked the transplant doctor what I had to do to live another 10+ years. His answer:was quick and simple: 1)Take your meds. 2) Get routine labs 3) No alcohol. I just celebrated 11 years with liver and kidney transplant,

What has been the most surprising adjustment to living with a new transplant?

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@gphetteplace

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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@gphetteplace, I want to check in and ask how you are doing since you posted about your left side pain and your endurance level.
Like you, I was very sick and sedentary prior to my transplant, and that was especially hard for me because had been a healthy and active person before my liver complications set in. After transplant, I gradually increased my walking time and distance. At 6 months after surgery, and with my teams approval, I was able to do some hiking in the Great Smokey Mts with my husband. I was slower and didn't go as far as before, but it was a victory for us. I cried tears of joy as I climbed/crawled the final portion of the rocky trail to an overlook. I was 60 when I got my transplant.

Have you had your 4 month follow-up yet? What changes are you experiencing with your energy level?

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@rosemarya

@gphetteplace, I want to check in and ask how you are doing since you posted about your left side pain and your endurance level.
Like you, I was very sick and sedentary prior to my transplant, and that was especially hard for me because had been a healthy and active person before my liver complications set in. After transplant, I gradually increased my walking time and distance. At 6 months after surgery, and with my teams approval, I was able to do some hiking in the Great Smokey Mts with my husband. I was slower and didn't go as far as before, but it was a victory for us. I cried tears of joy as I climbed/crawled the final portion of the rocky trail to an overlook. I was 60 when I got my transplant.

Have you had your 4 month follow-up yet? What changes are you experiencing with your energy level?

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Hi Rosemary! Thank you for checking in! The left side pain resolved when I slowed down a bit, but the imaging revealed a decrease in blood flow through the hepatic artery. They were unable to place a stent, so they embolized one of the splenic arteries in an attempt to force more blood to the liver. It doesn’t appear to have worked, so the transplant team is planning a surgical revision. Despite that, everything else looked great at my 4 month checkup last week. I am so thankful we caught the hepatic artery stenosis before there was significant damage to my new liver. There are times I forget I’m a transplant patient, at least until my alarm goes off reminding me to take my meds. 😉 I have to say it is nice to be off the prednisone! I so appreciate your insights an encouragement. Thank you for the time you spend supporting the transplant community!

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@gphetteplace

Hi Rosemary! Thank you for checking in! The left side pain resolved when I slowed down a bit, but the imaging revealed a decrease in blood flow through the hepatic artery. They were unable to place a stent, so they embolized one of the splenic arteries in an attempt to force more blood to the liver. It doesn’t appear to have worked, so the transplant team is planning a surgical revision. Despite that, everything else looked great at my 4 month checkup last week. I am so thankful we caught the hepatic artery stenosis before there was significant damage to my new liver. There are times I forget I’m a transplant patient, at least until my alarm goes off reminding me to take my meds. 😉 I have to say it is nice to be off the prednisone! I so appreciate your insights an encouragement. Thank you for the time you spend supporting the transplant community!

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@gphetteplace @rosemarya I also had this problem with my hepatic artery but they caught it about 3 weeks post surgery. I was opened back up and they surgically grafted it to strengthen and repair it. I have to admit the 2nd surgery was a bit harder (for me) to recover from. I had my original surgery Nov 28th but spent Christmas in the hospital for the 2nd surgery. I wish you a speedy recovery!

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Wow. You have really had a tough time. How are you doing now? They have postponed my surgery based on the ultrasound results. I’m praying the splenic artery embolization worked after all once everything had time to settle down.

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