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Author Topic: Can't sleep at all!!! PKD to blame?  (Read 7528 times)
Angiepkd
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« 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!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Cordelia
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« Reply #1 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
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Angiepkd
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« Reply #2 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!
Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Cordelia
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« Reply #3 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;
« Last Edit: February 07, 2013, 05:23:20 PM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
natnnnat
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« Reply #4 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.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
Cordelia
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« Reply #5 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.
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Angiepkd
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Posts: 598
« Reply #6 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!
Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Cordelia
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Posts: 2012
« Reply #7 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
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
nholleger
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« Reply #8 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;
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Nadine
skg
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« Reply #9 on: April 15, 2013, 03:08:01 PM »
Quote from: 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;
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
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Angiepkd
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« Reply #10 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!
Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
lmunchkin
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Posts: 2471

"There Is No Place Like Home!"
« Reply #11 on: April 15, 2013, 05:19:20 PM »
Quote from: 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;

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;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
nholleger
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« Reply #12 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.  :-( 
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Nadine
Angiepkd
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« Reply #13 on: April 18, 2013, 10:42:50 AM »
Quote from: 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.  :-(

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! 
Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
amanda100wilson
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« Reply #14 on: April 18, 2013, 10:54:28 AM »
I second your lastcomment AngiePkD
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Whamo
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« Reply #15 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. 
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nholleger
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« Reply #16 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.
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Nadine
Angiepkd
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« Reply #17 on: April 21, 2013, 07:21:32 PM »
Good luck!  Hoping you feel better soon!
Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
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