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Author Topic: Issues with sleepless nights and resulting exhaustion after transplant?  (Read 594 times)
kristina
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« on: December 20, 2019, 03:49:12 PM »

How is it possible to achieve a good night's sleep without interruption after a transplant?
During the time of dialysis-treatments there are huge liquid-intake-restrictions and then - all of a sudden -  after a transplant - one is instantly supposed to drink three to four litres of liquid every single day ?  How can a body take all this without being busy 24/7 with "walkies" to the bathroom day and night?
... And at the same time one is supposed to have a good night's sleep without "chronic" interruptions to use the bathroom several times during the night as well ? How is an uninterrupted sleep possible under such circumstances?
Thanks. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #1 on: December 20, 2019, 05:50:14 PM »

I wasn't told to drink any special amount of water after my transplant. I'm sure I'm not drinking anywhere near as much as you are. Mind you, I know I don't drink enough but I keep working on it. I try not to drink any water after dinner though. Normally (meaning when I'm not struggling with utis or colds or whatever the latest ailment I'm dealing with causes issues), one middle of the night trip is all I make. Can you focus on drinking most of the water earlier in the day? Have you asked your transplant team about this? A goodnight's sleep is such a wonderful thing. I hope you can get there.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
kristina
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« Reply #2 on: December 21, 2019, 02:59:27 AM »

Hello SooMK and many thanks for your kind reply. Fortunately - perhaps due to my flu-jab - I have not (yet) had troubles with colds etc. (touch wood !!!).
I was told to drink so much liquid every day because it supposedly encourages the new kidney to "enlargen" slowly over time, so that it is going to be able and do the work "for two".
Another reason for my having to drink three litres of liquid every day is the fact that I was extremely unlucky, because instantly after the transplant I had to overcome a huge struggle with two very serious utis and that did not give my transplanted kidney much of a chance from the very start ... and therefore my % of kidney-function is unfortunately still not something to "write home about" ... but ... the good news is, that the doctors told me that if I continue to drink three litres of liquid every day, the kidney function will hopefully pick up and get better ....

For many months I have been trying to get through these three litres before ~18.00 pm, but drinking such a large amount of liquid (mainly water) from early morning onwards until about ~18.00 pm makes the new kidney to be a bit overcharged and it needs more time to slowly "work over" all this amount of liquid and therefore unfortunately all these nightly "walkies" continue ....

Many thanks again for your kind reply and many thanks also for for your kind wishes and hopefully "things" get better in time.

Best wishes and many thanks again and kind seasonal greetings  :santahat; from Kristina. :grouphug;
« Last Edit: December 21, 2019, 03:00:38 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #3 on: December 21, 2019, 07:57:09 AM »

Kristina, during this time when you are having to drink so much water, do you think you could carve out a two hour chunk out of your day for a nap?  Perhaps that will help you catch up on your sleep?

Good luck, and have a wonderful Christmas and New Year! 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #4 on: December 21, 2019, 02:17:23 PM »

Many thanks MooseMom for this interesting idea and I shall try and give it a go. Mind you, it might take a bit of training because I am not really used to go to sleep during the day, but these days I have become so completely tired that it may work...
Many thanks again and I also wish you good luck in 2020 and have a wonderful Christmas :santahat; and take care ...  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #5 on: December 21, 2019, 02:49:51 PM »

Kristina, there are a few occasions when my body just demands a nap during the day, usually after a poor night's sleep.  So, I can really sympathize with your feelings of constant fatigue.  Since the nights are now so long there in the UK, it's surely tempting to want to stay awake for as long as possible during the short time that there's sunlight!  But these are extraordinary times for you, so perhaps you can make some temporary adjustments to your daytime schedule while your body is still coming to terms with being transplanted and bombarded with drugs.

Best wishes to you!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #6 on: December 21, 2019, 08:44:22 PM »

I don't mean to sound flippant so apologize if it does but, maybe waking and starting your day earlier might help. I've not had a transplant but because of Pulmonary Sarcoidosis I am having to take a water pill (Furosemide). I've been trying to get up very early so that I can get all my "walkies" to the bathroom out of the way. I am taking a lot of meds and have to give them enough time to be absorbed before taking the water pill. I don't want my meds getting "washed out". After that I start in on my first water pill and begin the walkies. I don't take the next water pill until later in the evening but a few hours before bedtime. Maybe your doctor will let you experiment with your schedule for taking meds and drinking water. Sounds like you are doing better these days and still very much in the drivers seat! You got this!  :cheer:
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #7 on: December 22, 2019, 11:10:09 AM »

Many thanks MooseMom and PrimeTimer for your kindness to give these helpful ideas. It is quite true, I am "bombarded" with lots of heavy medications every day and because of that I have to live according to the clock as well as I have to make sure that I always take the anti-rejection-medicines etc. at precisely the same time and not a minute too early and not too late either and that really puts me on the spot all the time as well, especially since these anti-rejections are indeed a very "heavy number". Many thanks for your kind thoughts and PrimeTimer, please don't think your comment could be in any way"flippant", as you put it, because what you say is very much appreciated and also well understood.

Today for the first time I "parked" myself on the sofa, but this time I tried to have a nap and it came quite easily, probably because I was so tired that I could not bother too much any more and so I fell asleep instantly and felt a bit better afterwards.

From now on I shall try to do do this every day and shall also make allowances for it.

Many thanks again for your kind thoughts and I am very grateful and wish you a very Happy Christmas  :santahat; and lots of luck in 2020. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
PrimeTimer
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« Reply #8 on: December 22, 2019, 07:03:12 PM »

Kristina,
Thank YOU for YOUR kind words! It means a lot to me. I am glad you decided to try a nap today and had a little rest. We know our own bodies better than anyone else and we know when we've pushed ourselves. When a person needs a rest they need a rest! I worry about my comments on the site as being "flippant" because I don't have kidney disease, am not on dialysis nor have had a transplant. Other than watching my husband live with ESRD and dialysis, I really do not know what it is like for you "kidney" people. But, if there is ever anything that I even remotely think could help someone then I want to try to pass it on. I admire and respect everyone on here. I've learned a thing or two from all of you, that's for sure! The strength that everyone on here has is actually helping me go through my own trials and tribulations. I am so grateful for this site and for friends like you.

May peace and love dwell wherever you may be this holiday season! Merry Christmas and Happy New Year!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #9 on: December 22, 2019, 07:33:48 PM »

I worry about my comments on the site as being "flippant" because I don't have kidney disease, am not on dialysis nor have had a transplant. Other than watching my husband live with ESRD and dialysis, I really do not know what it is like for you "kidney" people.

In my book, you a "kidney" person just like any of us.  You don't have to have kidney disease to know how awful it can be.  You just have a different perspective, and that is valuable to us because we ourselves can be so tired or ill or frightened or frustrated or downhearted or despairing to see otherwise.  So, please don't ever be worried about appearing "flippant".  We know better than that!

Have a wonderful Christmas!  I know you have had your own trials and tribulations, so I hope that you can find some peace and a modicum of better health.   :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #10 on: December 23, 2019, 08:19:26 AM »

Many thanks PrimeTimer and MooseMom for your heartwarming comments, which are very much appreciated.
And Prime Timer, I was reading up on Pulmonary Sarcoidosis and I feel very sorry about it and do hope, you receive the very best treatment and I keep my fingers crossed for the future.

Dear MooseMom and PrimeTimer, many thanks again for your heartwarming comments and I wish you both a Happy Christmas and the very best of luck in 2020 from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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