Vivid awakening nightmares, sweating, hot flashes every night

@mdplastics, Welcome to Connect, and Congratulations on your recent liver transplant! I am a transplant recipient and my transplant ( simultaneous liver and kidney) was in 2009. As I read your post I recall what other members have shared similar post transplant struggles. It is not limited yo liver transplant patients.
I remember after my transplant, that I needed a nap each day. In fact my husband made sure that I was not disturbed from 12 noon - 3PM each day, so I could nap, or simply rest. I learned that I had to rebuild my endurance for activity due to my inactive and difficult pre transplant period. I increased my walking distance over time, and that helped. I discovered that I could only allow myself one cup of coffee, and no caffeine after lunch if I wanted to sleep. It was a while before I could sleep through the night, though. At my 4 month checkup, my iron was low, so my team prescribed an iron supplement until my level returned to normal range.

I want to share a couple of discussions where members have discussed some of their own early post transplant experiences. I invite you to take a look, and you will find the oldest replies to be related to your concerns. If you would like to direct a question or a comment to a particular individual, just post their @name like I have included yours at the beginning of this reply.
-Post Transplant Surgery and Early Recovery: What's normal?
https://connect.mayoclinic.org/discussion/post-liver-transplant/
-What helps with post liver transplant fatigue?
https://connect.mayoclinic.org/discussion/post-liver-transplant-fatigue/

@btwest6, @gphetteplace, @contentandwell, @stolson1, @kennyj12462, @krsunny1 - What would you like to add to my response?

@mdplastics, It is possible that your medications are impacting your lack of focus, brain fog, sleeplessness, fatigue... Is your transplant team monitoring your tacrolimus blood levels?

Medication levels are monitored regularly. They remain therapeutic and not toxic.
Appreciate your detailed response to my post.

@mdplastics, I'm wondering if your issues with night sweats with awakening vivid nightmares and hot flashes have resolved or lessened over the past weeks since you posted here?

This might be a long shot, but do you think it might be related to post intensive care syndrome (PICS)? Have you heard of PICS?

Thank you for your comments on Post ICU Syndrome. There may or may not be an element of it, although unlikely as my ICU stay was only a day and I was extubated the night of transplant surgery. We did struggle with hyperglycemia first two weeks post op. and used steroids per protocol. As for pre procedure personality traits, there was no anxiety or depression being a senior surgeon well familiar with the surgery and hospital environment.
The vivid nightmares with night sweats, delusions, and less frequent hallucinations continue. Symptoms wax and wane at times but never resolve. Seem to correlate with Tacrolimus levels at times.
?High Tacrolimus?=?Increased symptoms. Tacrolimus crosses the blood brain barrier hence may be a side effect albeit not a well known one. I have also noted at times, a correlation of symptoms with a full bladder but not always. Worse symptoms once when Tacrolimus levels had gone up to 15.
We have considered the extended release Tacrolimus preparation thinking symptoms may be timed to Tacrolimus peak, but they occur at different times of the night and days as well when I take a nap. Thanks again for the comments.

Hi, @mdplastics I'm a bit late in responding, I've been very busy with other situations.

I had night sweats for a very long time. I am now approaching my 6th "transplantiversary" in September and it's only been in the last year that they seem to have decreased substantially. I do still have an occasional one though.

I think I was a bit foggy, or maybe my memory was shorter than usual for a while but that did eventually resolve. I do have other sleep issues which I don't think are related to my transplant, so often I do need a nap during the day.
JK

I wish I could be more help but things overall went very well so there is little that really sticks out to me.

I was initially on tacrolimus but due to it causing high creatinine I was switched to sirolimus. I think the other side effects are similar for both of them though.

Thank you for your comments. I have heard of another post transplant patient with night sweats as well. Still a relatively infrequent side effect of mostly unknown etiology. Vivid nightmares and night awakening remains problematic. The other functional change is short term memory issues and lack of endurance with easy fatigue and tiredness. Good to hear that at least some symptoms have abated with time for you.

Good morning
I have noticed that lately I have been experiencing hot flashes roughly 20-30 minutes post taking my TAC. I am almost 3 years post liver transplant. I only take 2mg of TAC 2x per day, and 500 mg ursodiol 2x per day. I have been taking the ursodiol for 12 years now. Thank you 😊

@footballmum
Congratulations on a successful transplant. I am 8 months plt. I take 1 mg tacro 2x a day. I too suffer from hotflahes. It's uncomfortable. My hematology Doc said it was indeed tacro & that it was a side effect. I am sensitive to most of the tacro side effects. For me being alive outways any uncomfortable side effects. I'm sorry you suffer. I dress in layers & carry a fan. I also drink lots of water.
On a side note have you had your hormones checked?

Thank you for your response. Yes, my PCP did a thyroid specific test a few months back, and my annual review blood tests include a thyroid test as well. I'm relieved to hear this is semi- normal.
Good luck on your journey
☺️

I’m about 6 weeks post liver surgery and I just started having night sweats the last week. I’ve had vivid dreams since the surgery. My night sweats don’t happen every day, but it’s one or two days in between. I did get my Tacro increased about a week and a half ago, but don’t know if that’s the true issue. Have a follow up and bloodwork tomorrow where I’ll ask again about the sweats.