Kidney Transplant

[LisaGrehn]

Hi, My boyfriend has been waiting on the Kidney transplant list for over 4 years. He has been doing Dialysis three days a week for years, well about a month ago he got the call! And he got a new kidney! He is doing great kind of...... My biggest concern is his levels are all great but he is having a hard time sleeping at night, I guess the anti-rejection meds can make you not sleep? Any advice I can give him to help him sleep? He is trying melatonin but he still gets heartburn when he eats certain foods. He has no energy during the day as a result and I think he is a bit depressed. Any help you can give would be great!! Thanks in advance

[Seanthesheep]

Hi Lisa,

Firstly congratulations to you and your boyfriend. I had three years of dialysis before a transplant three years ago.

A month is nothing. It takes about six months for your body to adjust to the new kidney. There is also a significant emotional impact which needs to be managed.

Just keep in touch with the nephrology team as they will help. Take each day as it comes and everything should fall into place.

Good luck and best wishes

Sean

[LisaGrehn in reply to Seanthesheep]

Thank you Sean, what do you mean by emotional impact? What is the best way to handle that? By the way congrats to you as well! It does get easier correct??

[Seanthesheep in reply to LisaGrehn]

Hi Lisa,I received a deceased donor kidney so you do feel emotional when you reflect on their loss. If you have a living donor again it is such an immense gift that it takes some getting used too. Most recipients bottle their emotions so perhaps a discussion may help.

Everybody's circumstances are different but my life improved beyond belief once my medication was sorted and all the aftercare was finished. I now do bloods and a review every three months so it is not always on my mind.

Talking always helps so that route is better than even more medication.

Cheers

Sean

[Suchet23]

I also could not sleep post transplant until the prednisone dosage dropped to 15 mgs or so per day. Nothing for me to do but to wait it out. At the maintenance dosage of 5 mg daily it has no impact on my sleep. I wa told by the nephrologist that it was common.

[PuggyWuggy]

I have had my transplant for over 18 yars, and luckily, I have never had a problem sleeping. My sister (not a kidney patient), has had problems sleeping all of her life. When she drinks a cup of Linden tea, she falls asleep right away. Please have your boyfriend ask his nephrologist if it is o.k. for him to drink Linden tea since it is an herbal tea and transplant patients need to be careful with herbs.

[WYOAnne NKF Ambassador]

Sleeping is an issue that all transplant recipients have to deal with. He is probably on Prednisone as one of his meds. It is known to keep you awake. Make sure he keeps in touch with his transplant team and they know of his sleep issue. Usually, at about 6-8 months out your body adjusts to these meds. If his lab values are good, they may be able to reduce his dose of Prednisone at the 6 month mark . That will help. Doctor's did give me Ambien for sleep short term.

I am 24+ years out from my transplant. It just takes time and I know it's hard. It will get better!

[Seanthesheep]

Hi Lisa, Quick questions. What is your boyfriends name and is he on prednisone

[Cabrilla]

Hi, Lisa,

I am 3 weeks post transplant. I did 6 weeks of dialysis before my transplant (I was matched through the living donor program).

I am usually a champion sleeper, but I have struggled with sleep since the transplant. It is well known that prednisone causes restlessness and poor sleep. Once he gets to the maintenance dose of 5mg, this should improve.

I was warned by my transplant team about "mood swings" as the prednisone dose dropped and this also occurred. For the last week, I find that I have no desire to do anything but sit on the couch. I am usually nonchalant about medical procedures, but when I went in to have my dialysis catheter removed, I sobbed during the whole procedure. I feel angry about how long this recovery is taking, if my kidney function is so good, why don't I feel better? But I can also look back and see that every day I am a little bit better and I know that in a couple of months I'll be myself again.

For sleep, I find that I sleep better on nights when I've been more active. My teenager came to visit over the weekend and we went out and walked around. A friend came over and we walked 2.25 miles to eat outdoors at a restaurant (I live in the Pacific Northwest, so fortunately winter temperatures are around 50F). Sometimes I walk 1.5 miles up to the local food coop to pick up chia seeds (for magnesium). I have a fitness app that is also a social media app (Strava) and I've enjoyed pushing myself to do longer and longer walks. It also feels good when friends like my "workouts".

I've been following my transplant teams advice and I only drink 1 cup of coffee each morning and avoid anything with caffeine the rest of the day.

Perhaps my experience can help with some ideas for you to help your boyfriend. Best wishes!

[LisaSnow in reply to Cabrilla]

I was never told to restrict caffeine. Did they say why?

[Cabrilla in reply to LisaSnow]

They didn't say why to restrict caffeine, just that it is better for the new kidney. I miss it, though! While I was iron deficient and having fatigue from CKD5, I became over-reliant on it!

[Jayhawker]

I’m a little over 15 months post transplant. I have had problems sleeping too, particularly before they got my prednisone dose down to 5mg maintenance level. I think stress and anxiety may contribute to sleep problems for many of us during the first year. Plus, as I was able to be more active that seemed to help a lot with sleep.

Jayhawker

[ShyeLoverDoctor]

Here is my experience on prednisone.

They tapered me down from 20 mg prednisone down to 5 mg over a period of maybe 6 weeks. I was having trouble sleeping but I was also in a lot of pain. I only took Tylenol after my first four days in the hospital which was not enough, I “ran out” of pils to take at night since I had taken 6 during the day. I can’t take opioids I had a near fatal reaction to them after the first 5 days in the hospital using them.

So we didn’t know if the pain was keeping me awake or steroids. Steroids are well know to cause insomnia

Here’s my experience on steroids:

Then what happed to me was, my white count dropped to almost zero. They admitted me to the hospital and took me off myfortic (which is the least” important immune suppressing drug. at least for my regimen) After 5 days of tests that found nothing else wrong - the drugs did their job too well, my system just cried “uncle”and rolled over and almost quit. So they decided to keep me off myfortic and increase the prednisone to 10 mg. Sleep was impossible and I felt so horrible by 4 days later I felt Iike killing myself. I told the team that and they sent the police to my house to basically involuntarily commit me to a psych hospital.

There was no doubt in my mind if they did that, I’d lose the kidney. No way would a state psychiatric hospital keep my meds straight there and give them to me on time.

Their was a very tense interview with the police social worker.. I had to point out that feeling like I wanted to kill myself and actually planning to do it is not the same thing. I felt like I wanted to, that didn;t mean I was going to. I have pipolar disorder and have had quite a few periods of feeing suicidal but have never ever attemped it. I was able to convince them I was not at high enough risk to lock up.

Before my transplant my psychiatrist had to write a letter to them saying I was safe to transplant, plus I was one of the most medication compliant patients he has ever had. I was put on meds at age 18 and never quit taking them (unlike abut 50% of patients) and was not at high risk for suicide. That’s what centers are worried about,, that you’ll go off your meds.

My transplant coordinator said please don’t be mad I had someone else in my life kill themself. I said I totally understood the point was to keep me safe. (I doubt I would hve been that understanding if that interview had gone a different way.) She told me she has seen people on prednisone throw their food trays across the room or men breaking down and crying.

We lowered the dose to 5 mg again and I felt fine in 2 days. And my sleep went back to normal,

They wanted me to raise it again at one point and I agreed to 7.5 Mg., no more, and even then, only for a short time. There has to be a balance between quality of my life and keeping the kidney.

There is always a trade off between how much medicine they are going to give you to save the kidney vs quality of life. They want your life to improve, not get worse.

Before the whole prednisone dose incrsease disaster, at about 3 weeks I did get very down and told them I regretted having the transplant. My transplant coordinator says many patients have told her the same thing.

Finally a few days later, one of the PA said Oh yes the drugs are the hard part. Not one single doctor had ever acknowledged that to me. No one bothered tel tell me predmise came really bring you down. I thought Ihad to worry about it making me manic high.

I had a bad reaction to the tacrolimus and finally it did get so bad they switched me to cycosporine. Before the swtich I had nasty side effects. I had no idea that drugs would be that hard. They were constantly changing meds to bring my blodid pressure down and them not working. I was dizzy, bad tremorsm ad headaches.

I am now 8 months post transplant and my blood pressure still isn’t where we want it!!! How many drugs have I tried? 6 or 7or 8 even?

I never had the emotional issue of “this kidney should have gone to someone else” or “I feel so bad my donor died” etc My issue was I wish I hadn’t had a transplant and I had been “better off” on dialysis because at least then I had semi-decent days and now every day was miserabl because of the anti-rejection meds. I felt I hadn’’t been warned or prepared.

I did also feel I owed it to the person who donated their organs that I keep going. I didn’t want to “waste” it.

I called it “the kidney” like, The kidney is doing well, my labs are good but I feel bad.“ At about 4 months I spontaneously started calling it “My kindey”.

Things really really truly get better. EVeyrone kept telling me that and I said “When??? When???

Finally at abut 6 months I started feeing like I had this thing under control. My 6 month lab work and checkup went great. Two weeks later I was in the hospital for the low white count!

Recovery is not a straight line. Everyone’s path is diffent.

Many people hate prednisoe , I even read people call it an “evil”drug. Yet it can do great things as far as controlling rejection & easing pain by injection for many.

Activity during the day may help him sleep better. Don’t push too hard, body still recovering and he may be anemic.

Sleeping in a very dark room. Having a nightly ritual to unwind. Turn all electronics and TV off an hour before bedtime. A warm not hot bath half hour before. Tell the doctors about what’s going on, ask if they will prescribe a keep aid, but do not count on it.

It may just be a matter of holding on until the dose gets decreased. Trust it will get better.

I go to a weekly transplant zoom (run by a social worker from my transplant center, plus one from another center) and it helps me immensely. I would ask if your hospital has one or look for ones at other centers. We all encourage each other. Some are trying to get on the list, some are one the list waiting, a couple caregivers come, but mostly it’s us transplant patients.

Hope this is helpful.

[Bax509]

I received my kidney June 2021 and had very little sleep that summer, especially since I had a little initial rejection and they loaded up the prednisone for a bit. It was a hard summer not only for lack of sleep but getting used to all the medicines. In many ways your boyfriend is trading one set of problems for another - but the problems he is experiencing right now will very likely ease and hopefully he will feel better. Stay closely in touch with transplant team. As far as emotions go - I had a living donor but my emotions involved seeing my life in a new way. I had never realized how limited I really felt before the transplant. It's big physical and emotional transition that wasn't really addressed by the transplant team before I received my kidney. They give you so much information though and since everyone may react differently they don't cover that particular issue.