Anyone else have problems with being able to sleep post-transplant?

[ILMA54]

I was the grateful recipient of a new kidney on July 13. Following surgery, while in the hospital, I could not sleep more than 3-4 hours at night. This was to be expected given the constant disruptions to collect vital signs, administer meds.

When I got home, I found myself going to bed at my normal time (10 pm) and waking up at 3:15 a.m. Sometimes I could fall back to sleep until 4:30, but this was intermittent sleep. Also, I increased the tacrolimus dose from 2 mg twice a day to 3 my twice a day last Thursday.

Monday, I started back on my ADD meds, and now I'm lucky if I get three hours of sleep. Usually, it is more like 2 hours.

I know the prednisone and elevated tacrolimus can cause sleep issues, but my tacrolimus levels have been on the low side, and earlier this spring, I took prednisone to address an autoimmune disease and the initial dose was 40 mg/day (with no sleep reduction) vs the 20 mg/day I started on post-transplant (am currently on 15 mg/day).

Has anyone experienced similar issues? Do they resolve eventually?

Other than sleep, I'm very pleased with the transplant and have had minimal pain since the day after the transplant.

Looking forward to your feedback.

[Okiksaints1955]

I have the same issue for 2 months. I used to average good sleep (using fitbit which deducts the "awake" time) about 7.5 hours. Those 2 months, I average 5 hours.

I reviewed the side effects of my meds, ALL of them mentioned insomnia and change in sleep pattern. About half of them cause restless. I also talked to my Nephrologist and he said the prednisone causes nervousness. He advised to relax as it really takes time to adjust.

Knowing that this is "normal" and having someone to confirm it, I was at peace. I also refrained from drinking water after 6 pm (reduced peeing breaks). And when I still wake up and can't go back to sleep after 30 minutes, I just start my day early. This make me tired by 7 pm the next day and actually have a good next night sleep. Worrying in bed and being awake adds to the frustration. This helped increased my sleep 6.5 hours of good sleep (again fitbit).

Ultimately, after a few more months, I upped this to 7 hours - that's where I am now.

BTW, just noticed that you said "you changed... " I hope this is with the direction of your medical team. There is a direct correlation to the results of the test (2X a week at this stage for you) and the mix and match of meds.

Hope this helps. Take care and be well

[ILMA54 in reply to Okiksaints1955]

Thank you for sharing your experience. I am also finding that walking and not napping certainly help.

[HughL]

I had same sleep problems, I finally went to dr and got sleep meds.

[ILMA54 in reply to HughL]

Thanks for the response. Did you try melatonin first?

[HughL in reply to ILMA54]

Yes but sleep dr took me off them.

[HughL in reply to HughL]

I should add- my regular family referred me to a psychiatrist. We went through several meds until finally getting the right combination.

[WYOAnne NKF Ambassador]

My sleep improved some once I was taken off prednisone. But I continue to have issues. I do take Melatonin, which does help some. My nephrologist gave me ambien, but I try to only take it for help with sleep when we travel.Evidently this is a common problem with the immunosuppressants that we take. I wish I could tell you that it will get better... I try to never take a nap during the day, and take a walk everyday. I try to follow the same routine every night. I go to bed at the same time, I read before going to sleep 15-30 minutes.

Good luck

[ILMA54]

Thank you for your response.

[budneyy]

Yes I tried melatonin but it didn’t work for me.

[SoCal1]

Congrats on your transplant. Same issues for me, so I'll be brief. I'm 5 years post transplant and I still have sleep issues, but it's not as worrying to me as it was originally just knowing that it's alright. Some nights I sleep 6 hours, some nights only 2-3. I take melatonin, but I'm not sure if it helps. It definitely gets better after the first 3-6 months when your meds come down and you get more acclimated to them, but try not to worry.

[ILMA54]

Thanks for responding.

[Hidden]

Yes. This is very common. The medications cause insomnia and anxiety kicks in and doesn't help. I am 30+ years out and still have sleep issues. Some suggestions: try to relax (haha), don't watch TV or use social media before bed and limit fluid intake, so you don't have to get up at night to urinate. You could request a low dose of Trazadone to knock you back into a normal sleep pattern. Although, I wouldn't stay on it forever. Ask your PCP to write it. Good luck and hope you find a solution.

[ILMA54 in reply to Hidden]

Thank you for responding .

[mtwskk]

I also have the sleep issues. I'm 9 years post transplant. Initially your body is getting used to the kidney working. Just lay quietly and you'll get the rest you need. Your mind is what needs rest the body can function without a lot of sleep but you mind needs it. I wouldn't recommend taking to many sleep aids as they interact with our nice little coctail of drugs we all take daily. I figure if I don't sleep day one, I lay there and just rest and day 2 I usually pass out at night. It all works out. Just don't push the issue. Be thankful we have the transplant and that God has blessed us. Take care and Smile. We are all blessed.

[ILMA54 in reply to mtwskk]

Thanks

[ILMA54]

Thanks

[klb36]

i was on so much prednisone and solumedrol i slept only 3 hours my first first eight days after the transplant eventually your body gets used to the drugs and you will sleep better also my doctor switched me taking prednisone at night before i went to bed. 37 years later i still take 10 mg of prednisone and sleep like a baby. it takes time for your body to adjust to the drugs . The good thing is here your have a lot of people to talk to you as 37 years ago there were no groups or support to help .I wish you all the best

[ILMA54]

Thanks!