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!

I know it can be a side effect of Tacrolimus. I feel so much better since my liver transplant it’s a minor inconvenience for me. If it’s a problem the doctor may have something to mitigate it.

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@btwest6 I am 3.5 years post-liver transplant. Initially, I was on tacrolimus but now I am on sirolimus. I too have hot flashes, mine are primarily at nighttime but I do occasionally get them during the day. They have abated somewhat just recently, although they are not entirely gone. I think, as @gphetteplace commented, it's just an inconvenience you learn to live with. You should of course mention it to the transplant team, just in case they have some advice or feel that it is not typical.
When I get them in bed I can feel the heat rising from my body. I just hate that it is something that disturbs my sleep.
JK

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@btwest6, Welcome to Connect. I want to say how thrilled I am to hear about your husband's transplant and his ongoing recovery.
You are not alone to ask questions. On Connect, we are recipients and caregivers, and we have a unique shared experience that makes us all experts of our experiences. We always advocate for being proactive in our health, and we rely on our transplant teams for medical advice. Have you mentioined this to the transplant team? It could very well be from medications that he is currently taking and as time goes forward, dosages and his reaction might change. It also might be something that he will have to learn to live with.

You will notice that the title has been changed. I requested this because all organ transplant recipients share a similar post transplant period of adjusting and healing. I hope that this gives the newly transplanted patients and caregivers a place to meet each other and to share what is happening as recover they recover.
I would like to invite some members who have mentioned that they have recent experiences as organ transplant caregivers or recipients.
@seahorstmayo, @nkdonahue, @tjgisewhite, @stephanierp, @bobbayers, @jsw, @brenwhite, Did any of you experience post transplant hotflashes?
Do you have anything that you would like to ask or share about your post transplant experiences?

Here is a discussion where our members have shared quite a lengthy and informative conversation: Transplants > Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
You can also access it in this blog that was created afterward by the transpoant team!
Pages > Transplant > Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Enjoy your day. Enjoy your life.

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Good morning all. I got my liver transplant in December 2019 and have experienced hot flashes post transplant. Heck I thought I was going through menopause, now I wonder…hmmm

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@rosemarya

@btwest6, Welcome to Connect. I want to say how thrilled I am to hear about your husband's transplant and his ongoing recovery.
You are not alone to ask questions. On Connect, we are recipients and caregivers, and we have a unique shared experience that makes us all experts of our experiences. We always advocate for being proactive in our health, and we rely on our transplant teams for medical advice. Have you mentioined this to the transplant team? It could very well be from medications that he is currently taking and as time goes forward, dosages and his reaction might change. It also might be something that he will have to learn to live with.

You will notice that the title has been changed. I requested this because all organ transplant recipients share a similar post transplant period of adjusting and healing. I hope that this gives the newly transplanted patients and caregivers a place to meet each other and to share what is happening as recover they recover.
I would like to invite some members who have mentioned that they have recent experiences as organ transplant caregivers or recipients.
@seahorstmayo, @nkdonahue, @tjgisewhite, @stephanierp, @bobbayers, @jsw, @brenwhite, Did any of you experience post transplant hotflashes?
Do you have anything that you would like to ask or share about your post transplant experiences?

Here is a discussion where our members have shared quite a lengthy and informative conversation: Transplants > Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
You can also access it in this blog that was created afterward by the transpoant team!
Pages > Transplant > Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Enjoy your day. Enjoy your life.

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I honestly never thought about it—I assumed it was the temperature in my mom’s house—but yes, I definitely have hot flashes. Post transplant, I used to wake up multiple times every night while I was still undergoing dialysis and my kidneys were deciding whether or not they wanted to awaken and participate with my new liver (READ: to pee), so I can’t remember if the hot flashes were also a factor. As of today, though (one year on 5/10/2020!), the hot flashes are the obvious variable.

(So thank you for asking this question bc I never knew to ask it and now I know what I didn’t know I needed to know! 🙃)

They don’t wake me up every night but when they do, it’s only once or twice. I also wake up earlier than planned most days because I’m way too hot. Even in the winter.

My suggestion is to point a fan directly at your bed. On high.

Congrats on a successful transplant! I promise it gets easier 😊

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@jsw

I honestly never thought about it—I assumed it was the temperature in my mom’s house—but yes, I definitely have hot flashes. Post transplant, I used to wake up multiple times every night while I was still undergoing dialysis and my kidneys were deciding whether or not they wanted to awaken and participate with my new liver (READ: to pee), so I can’t remember if the hot flashes were also a factor. As of today, though (one year on 5/10/2020!), the hot flashes are the obvious variable.

(So thank you for asking this question bc I never knew to ask it and now I know what I didn’t know I needed to know! 🙃)

They don’t wake me up every night but when they do, it’s only once or twice. I also wake up earlier than planned most days because I’m way too hot. Even in the winter.

My suggestion is to point a fan directly at your bed. On high.

Congrats on a successful transplant! I promise it gets easier 😊

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@jsw Early congratulations on your transplantiversary! I might not remember it next Sunday, so bear with me.

I wonder if the hot flashes have anything to do with a side effect of medications and your body'e hormone levels? Just a thought.
Ginger

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I get those too. It was worse at first but not so bad now

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What's Normal – @btwest6, @gphetteplace, @tjgisewhite, @jsw, @michaelswaim, Learning to adjust to life with our new organs is both exciting, and also confusing, as we begin a new normal post transplant life. In this current environment of change, I think we all can find comfort in knowing the basic do's and don'ts for transplant patients.

Here are the basics, as shared by fellow transplant recipients -Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
What questions do you have about living with a transplant? For those who have to go out for appointments, how are you handling it? What about your family, do they understand your need to be vigilant about your health and safe practices?

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@rosemarya

What's Normal – @btwest6, @gphetteplace, @tjgisewhite, @jsw, @michaelswaim, Learning to adjust to life with our new organs is both exciting, and also confusing, as we begin a new normal post transplant life. In this current environment of change, I think we all can find comfort in knowing the basic do's and don'ts for transplant patients.

Here are the basics, as shared by fellow transplant recipients -Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
What questions do you have about living with a transplant? For those who have to go out for appointments, how are you handling it? What about your family, do they understand your need to be vigilant about your health and safe practices?

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My family is extremely supportive, as are my friends, and probably more vigilant than necessary. I’m only “allowed” to be around my mom, brother, SIL, and nieces. My dog and I go on drives so we can both put our heads out of the window 😂. I’m a bit frustrated because I had to move into my mom’s house—can’t live alone for one year post-transplant—and had plans to move into an amazing apartment but had to cancel that plan once this hit. I feel like a brat even complaining since I’m very fortunate to be healthy and have a safe place to live.

Regarding my healthcare, I go to LabCorp once a month. I was worried at first but they are amazingly safe and aware. I can’t go to Georgetown because my doctors want to keep me away from any COVID patients, so my clinic appointments are all tele-health at this point.

I’d like to add one note to the hacks/tips and tricks: I have a 7-day pill set that I fill every week so I only have to carry one day’s worth at a time, and I set a reminder in my phone (8am, 12pm, 8pm) just in case.

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@jsw

My family is extremely supportive, as are my friends, and probably more vigilant than necessary. I’m only “allowed” to be around my mom, brother, SIL, and nieces. My dog and I go on drives so we can both put our heads out of the window 😂. I’m a bit frustrated because I had to move into my mom’s house—can’t live alone for one year post-transplant—and had plans to move into an amazing apartment but had to cancel that plan once this hit. I feel like a brat even complaining since I’m very fortunate to be healthy and have a safe place to live.

Regarding my healthcare, I go to LabCorp once a month. I was worried at first but they are amazingly safe and aware. I can’t go to Georgetown because my doctors want to keep me away from any COVID patients, so my clinic appointments are all tele-health at this point.

I’d like to add one note to the hacks/tips and tricks: I have a 7-day pill set that I fill every week so I only have to carry one day’s worth at a time, and I set a reminder in my phone (8am, 12pm, 8pm) just in case.

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@jsw, Yes! That is a great idea! A 7-day pill set is extremely helpful. A note of caution: make sure that the lids on those little compartments close securely. After I had mine for a while, the lids didn't fit tightly, and I had pills scattered everywhere in my purse.

I am laughing at my image of you and your dog riding along with your heads out the window!

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Hint for those 7 day pill containers.
I place a small rubber band across the morning pills and another across the evening pills after I close them across the lenght of the container.
When refilling I take one band and stretch it over the opened lids to keep them open (back to back) while refilling.

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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

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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