I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Angiepkd on February 06, 2013, 07:59:43 PM

Title: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on February 06, 2013, 07:59:43 PM
I am just barely stage 5 ESRD and cannot sleep. I know part of this is my PKD which has made my kidneys ginormous, but I can't fall asleep either. I am going to have to move into the spare bedroom if I don't figure this out soon. I toss and turn, can't get comfortable, finally fall asleep and then have to get up to use the bathroom!  Lately I have been trying OTC sleep aids like unisom and Tylenol pm. Anyone else have these problems? Or better yet - solutions?  So tired of being so tired lol!  Thanks!
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Cordelia on February 07, 2013, 06:31:13 AM
Insomnia was a big problem for me when I was in stage  5
I would be up all night and see the sun come up in the morning I wasn't sleeping at all. As well I had nasty leg cramps through the night. Once I started Dialysis it went away.
You could be needing to start dialysis.
I have pkd also
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on February 07, 2013, 04:52:26 PM
Thanks Cordelia! I went to the neph today and I am at 13%  function, so dialysis starts the first week of March. I will be doing home hemo with NxStage.  I hope my sleep gets better once I start. Did you feel better on dialysis? I have heard that patients with PKD do well on dialysis.  I am eligible for transplant in May, so maybe I will only have to do it for a few months. Thanks for your reply!
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Cordelia on February 07, 2013, 05:17:48 PM
Hi Angie, no problem.             :waving;

I was at 12 per cent renal function when I started dialysis. Yes, it helped me feel better. I did have some side effects from dialysis but generally overall I felt better. The nasty leg cramps went away that I would get in the middle of the night and the insomnia went away. I was finally able to sleep, which was a big relief!  I was so itchy I was clawing myself that I bled, so that was a big relief to no longer have that, either after I got on medication and started dialysis.

Looking back now, I don't know how I 'functioned' with three young children that I had to get up to in the morning, that was during the summer when they were out of school. I felt like I had to 'entertain' my kids while off school for the summer and I had completely had about as much energy as a snowball in hell.

I hope your dialysis goes well and helps make you feel better too!  I've been on in center hemo for 2.5 years.  I hope you don't have to wait too long for a transplant!  Good luck!        :grouphug;

Title: Re: Can't sleep at all!!! PKD to blame?
Post by: natnnnat on February 07, 2013, 06:08:52 PM
Gregory is sleeping better now that he has been on dialysis for a month, and his nightmares have more or less stopped too.  His skin has cleared up, and he has more energy.  He doesn't have restless leg *as much*.. but his creatnine is still coming down, its at 500 (5.65 in US) or so down from 855 (9.67 in US) so he still has a way to go with that.
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Cordelia on February 07, 2013, 06:45:34 PM
Even though I dialyze my creatinine is 900-1000 every month. Far better than the 2400 that it was when I went into hospital.
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on February 07, 2013, 08:29:46 PM
Sleep will be so wonderful!!  I am thankful my boys are grown and on their own! I babysit my 6 year old nephew after school until 6 and he wears me out some days!  My creatinine is 3.9 (not sure of the conversion difference).  I guess I will see how the daily home hemo works with my numbers. I can and will handle this without complaining! My oldest son has PKD like me, and I don't want him to worry. When my dad was doing dialysis all I could think of was "this will be me". I won't do that to my kids!  I have to admit I am scared, though. Happy to have found this forum with people who can relate! Thanks!
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Cordelia on February 09, 2013, 04:54:50 AM
My one twin daughter has pkd. The cysts on her kidneys are small right now.
I hope things go well when you start dialysis
It was scary for me when I first started dialysis too
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: nholleger on April 15, 2013, 10:15:16 AM
My kidney function is at 17 percent, but I can barely get through the day from being so tired.  My doctor said everyone has different symptoms at different times and said I can start PD whenever I am realy......am I ready?  I am so tired I can't stand myself.  Will PD help that? :sos;
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: skg on April 15, 2013, 03:08:01 PM
My kidney function is at 17 percent, but I can barely get through the day from being so tired.  My doctor said everyone has different symptoms at different times and said I can start PD whenever I am realy......am I ready?  I am so tired I can't stand myself.  Will PD help that? :sos;
I'm near where you are -- my GFR is 19. Fatigue is the main symptom I'm feeling as well. It was a little worse a couple months ago -- I was slightly anemic, and I think that is typical of anemia.

cheers,
skg
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on April 15, 2013, 04:32:40 PM
Not sure about PD, but I would think whatever type of dialysis you choose would help with your symptoms.  I do home hemo and can't believe how much better I feel. I started when I was around 12% function.  I am also sleeping through the night.  The last few months before starting D were pretty miserable for me.  No energy, fuzzy brain, no sleep and shortness of breath can ruin your day.  Hang in there and remember it does get better.  May not be immediately, but eventually you should feel better. Hope it all works out for you!

Title: Re: Can't sleep at all!!! PKD to blame?
Post by: lmunchkin on April 15, 2013, 05:19:20 PM
My kidney function is at 17 percent, but I can barely get through the day from being so tired.  My doctor said everyone has different symptoms at different times and said I can start PD whenever I am realy......am I ready?  I am so tired I can't stand myself.  Will PD help that? :sos;

I beleive it will help alot!  My husband was on deaths door when he was diagnosed ESRD. He started out with PD, and as he did it more he started feeling better.  But we had problems maintaining his BS, and he got peritonitis for a third time,thus ending his PD.  He got gangerine too, and it was Hellish for him.  We think & (Neph) that maybe PD, due to the Dextrose, was not the best choice for him.

Now he is on NxStage, and feels a whole lot better.  But PD was a good modality too.  It just did not suite him well because of his severe Diabeties.  Anything, IMHO, is better done at home.

God Bless,
lmunchkin :kickstart;
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: nholleger on April 16, 2013, 06:06:32 AM
I think I just don't want to admit it is time.  I am so tired that when I get up in the morning I want to go right back to bed.  If I take anything to help me sleep I have a "hangover" the next day.  My apt with the Neph. is on Firday.  I will let you know how it goes.  :-( 
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on April 18, 2013, 10:42:50 AM
I think I just don't want to admit it is time.  I am so tired that when I get up in the morning I want to go right back to bed.  If I take anything to help me sleep I have a "hangover" the next day.  My apt with the Neph. is on Firday.  I will let you know how it goes.  :-(

The not knowing and waiting period was so much worse for me than actually starting D!  I don't like to be in limbo, and was always wondering if this symptom or that symptom was caused by my kidney failure.  I can only tell you my own experience and I feel so much better on D!  I have also been sleeping through the night, which is huge for me.  No more sleeping pill hangovers.  Hang in there and keep us posted! 
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: amanda100wilson on April 18, 2013, 10:54:28 AM
I second your lastcomment AngiePkD
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Whamo on April 19, 2013, 01:17:01 AM
I'd agree with Angie.  I felt awful the six months before I started dialysis.  The transition to dialysis isn't easy, but I'm glad I did it. 
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: nholleger on April 21, 2013, 06:53:37 PM
I saw my nephrologist on Friday and as I expected she put me on leave of absense from work for 6 weeks so that I can get me PD (swan neck) catheter placed, healed, and PD training.  My GFR is still 17 but I have a cough all the time and she feels it is because I am retaining fluid and it is in my lungs.  I am also really tired, sick to my stomach and CRANKY! >:D  I am going to try to get the appointment scheduled with the surgeon for sometime next week.  I will keep you posted.
Title: Re: Can't sleep at all!!! PKD to blame?
Post by: Angiepkd on April 21, 2013, 07:21:32 PM
Good luck!  Hoping you feel better soon!