Post Transplant Symptoms

The going is slow. My doctor ordered a C-PAC machine which I am going to try for the first time tonight (just got it.) If that does not work, I plan to see a Neurologist. Hopefully someone will figure out what is causing these terrible symptoms! Thank you so much for asking! 😀
Gary

@gary1864 - Gary, I hope that the slow going will result on positive changes for you. (Think of the Little Engine That Could) I trust that the liver is still happy, since you didn't mention it. It is my understanding by listening to friends and family members that getting used to a CPAP can take some practice and patience.
I want to share this discussion where you can meet others and talk with them about their CPAP experiences.
Groups > Sleep Health > Cpap and sleep
— https://connect.mayoclinic.org/discussion/cpap-and-sleep/

Keep in touch, Gary. Let me know if I can be of any help.

@gary1864 You've had your C-PAP for a while now, how is it going? Are the symptoms you were having improving? Are you still on tacrolimus? I know it is the best for liver transplants but I was changed to sirolimus because tacrolimus was causing my creatinine to be high and that of course was a problem. I doubt they would have changed it for a lesser problem.

I hope you are feeling better now and things are settling down more for you. I know how discouraging it is to feel unwell for an extended period of time.
JK

Gary1864: Thank you for your post! I know it has been some time since your post but had to respond. I actually had two liver transplants, one in 2018 and another in 2019 due to the 1st one being (less than ideal). Both of my transplants took place at U of Wisc Transplant Hospital.
I got to this thread by looming up lactose intolerance in liver transplant patients, but was shocked when l started reading about your extreme fatigue. I have suffered from this post surgery and still to this day many of my days. I know it is hard to describe properly, although l could compare it to a hangover without the headache. I can get a full nights sleep, 8-10 hours and an hour after awaking be sluggish and have to sleep again. This nap is about an hour to hour and a half long. Some days needing another. All numbers are otherwise good, no lyme disease, no A1C issues as l am no longer diabetic post surgery. I am now off Prednisone and take EnvarsisXL for immunosuppressant, but was on Tacrolimus prior to that. My transplant doctors have no answers My primary physician tells me maybe it is something l may have to live with. Sleep now consumes my days and while it sounds like a nice problem to have, it is far from it. As they have chasing this issue for a few years now and adjusted my meds with this in mind, nothing seems to have changed. I was an extremely hard worker prior to surgery, and this is not something l am embracing. You are not alone in this fight. If your situation has improved or something is now working for you, please share. KennyJ

@kennyj12462 Your post brought up a couple of things, interesting to me.

First, did you become lactose intolerant due to immunosuppressants? I sure seem to have but it doesn't seem to be something that my transplant team, nor the speciality pharmacy that fills my prescription, was aware of. It took me a while to figure out what was causing my lower digestive problems. Now, about a year and a half later, I find I can eat some lactose without it bothering me as it did before. I can eat it when it's baked into something like Goldfish crackers too, but I can't eat mozzarella on pizza, I now make my own and use provolone.

I often need a nap shortly after breakfast but I have sleep problems, primarily due to urinary incontinence, so I blame it on that, but sometimes I just can't fall asleep. Last night I went to be at around midnight and I was still awake at 3:00.
Have you tried taking anything to help you sleep? I told my PCP that I sometimes take a Benadryl and she said that sleep is so important that I shouldn't worry about taking it. It definitely does help. If I go a couple of nights with inadequate sleep I take one the next night. I also sometimes take 3mg of melatonin. More than that is not generally recommended because it can cause nightmares and sleep disturbances.

You were diabetic before but are no longer? I also no longer seem to be diabetic, my A1c has been as low as 4.6, and the highest it has been is about 5.6 in the last couple of years - my transplant was in September 2016. My endocrinologist said that once a diabetic you are always considered to be one. It does seem odd though that it is better, and also my Barrett's Esophagus is now in remission.
JK

@kennyj12462, Welcome to Mayo Connect. I was extremely fatigued before transplant, so I know how miserable you must be feeling. This must also be a disappointment for you as you say that you were an extremely hard worker before surgery.

Kenny, I realize that there is a long list of replies in this discussion, bit I would like to suggest that you scroll through and read what others have had to say about fatigue. I invite you to meet @cmael, @des46893, @dcbrenek, who have all mentioned fatigue. You are welcome join in anywhere.

Are you able to get any exercise or activity on your 'good' days? Does that have any effect on your level of energy or fatigue?

If my nephrologist didn't listen to me, he would be gone like a midnight flash.
But I have a great nephrologist, I trust, and have the upmost respect for him.
He has alway been honest with me from the start.
I've worked in the medical field, retired now.
I'm familiar with the medical terminology when we talked at my visits before Covid hit.

My transplant was 3 years ago at the U of Minnesota my issue is I only sleep 3 hours or less and wake up. I feel tired all the time. I since the transplant I go about life but I am tired. My magnesium was 1.2 but it’s back up to 1.9 after taking 1600 mg a day. I am so grateful for my transplant and donor I had alpha 1 and had never heard of it until I turned yellow

@stolson1, I recently met another transplant recipient who is experiencing sleeplessness. I am going to tag you to that conversation - Look for a notification from me, then you can simply enter the discussion. Perhaps you and he can learn together.
I look forward to meeting you there!