I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on April 13, 2006, 03:43:13 PM
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I am so tired I can't even think when I get home from work. Typing on the computer is frustrating because I am so tired I make stupid mistakes all the time and have to proofread it over and over.
I am tired when I go to bed at night.
I am tired when I get up in the morning.
I am tired before dialysis.
I am tired after dialysis.
I am tired before I eat
I am tired after I eat.
I am tired before I take meds.
I am tired after I take meds.
I am tired when I go to wok.
I am tired at work.
I am tired when I come home after work.
I think I AM JUST PLAIN TIRED! Maybe I need to call a tow truck! >:D Go to Pep Boys and get retired! Oh Geez!
But seriously, I am tired all the time. Anyone else in this group tired ones?
Katherine
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I wouldn't be so tired if I could sleep 8 hours like a normal person. Six hours would be great! I go to bed about 9:00p. I wake up at about 10:30p. I go eat something and try to go back to bed. I listen to talk radio. I may fall asleep for a half hour at a time. I read. I watch TV. It makes me nuts. If I take a sleeping pill then I can't wake up when I'm supposed to. WHAT IS WRONG WITH ME?
Oh, yeah, I'm a kidney patient! :P
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I wouldn't be so tired if I could sleep 8 hours like a normal person. Six hours would be great! I go to bed about 9:00p. I wake up at about 10:30p. I go eat something and try to go back to bed. I listen to talk radio. I may fall asleep for a half hour at a time. I read. I watch TV. It makes me nuts. If I take a sleeping pill then I can't wake up when I'm supposed to. WHAT IS WRONG WITH ME?
Oh, yeah, I'm a kidney patient! :P
I had similar difficulties sleeping and my doctor put me on Paxil for sleep and it seems to be doing a good job! I take a 20 mg. tab. with lunch and then I have no leftover grogginess in the morning, as other sleep aids gave me. Good luck, that just sounds terrible to continue along those lines for any length of time!
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No trouble sleeping. except when on vacation. My nights and days mix up when I am on vacation. I stay up late and sleep half the day away. Lazy me. But when I am working full time I can sleep anywhere anytime. I could fall asleep across my desk at school if it would not get me fired. I am sleeping six to eight hours a night, usually 10 to 6.
Are other people tired as I am? I mean normal people. Everyone else at work looks chipper and happy and raring to go. Sometimes I feel like the wreck of the Hesperus and going down for the third time.
Tired of being tired.
Tired of tired of being tired.
Oh here I go again complaining! Whine! Whine!
Katherine
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YAWN!
Can't stop yawning, reading these posts ;) I do not know a renal patient not tired most of the time. The dialysis takes it out of you. More so on Haemo than on CAPD. I have found. Plus if you are pain killers like me, I'm even yawning now. The letters on the computer seem to be merging into each other.
Time to clear off for my afternoon snooze ;D
Kevno
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Oh, me too... some nights I can fall asleep fairly quickly but wake up after 2 or 3 hours and then toss and turn the rest of the night.. or take a pill.. other nights I just can't fall asleep even though I am tired as heck... :o can't win.. I hate depending on sleeping pills. I usually have to lie down for an hour or so in the afternoon.. great life eh? ???
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Naaaps. mmmmmmm Naaappps! I love naps in the afternoon, if only I could have one five days a week instead of one. My next week looks like this:
Monday: Up at 6 a.m. work by 7a.m. (Yes I have the awards for fastest getting it together in the mornings!), off at work, home 2:15, out the door 2:25, dialysis 3-7:30, then home by 8p.m.
Maybe a nap at noisy dialysis.
Tuesday: Repeat Monday, except no dialysis, instead at 2p.m. an IEP meeting after school with student parents, then at 2:45 another one, then go home when the paperwork is done on the IEPs.
Wednesday, see Monday all over again.
Thursday see Tuesday- only one IEP afterschool.
Friday- See Monday all over again.
Well no wonder I am so damned tired!
Makes me tired just thinking about it. I am NOT complaining, just explaining. Even though it sounds just like complaining I know.
My weekends are spent relaxing. Today at noon it is out to lunch with the family, then maybe out to a movie. Not sure though. I still feel pretty punky. Then Sunday I plan to read the paper in bed and relax.
You all rest easy this week.
Katherine
PS: IEP is Individualized Eduaction Plan/ Program (In case anyone wanted to know).
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Dialysis patients motto:
If I weren't so tired all the time I'd.....
climb Mt. Everest.
get up and do the dishes sitting in the sink this week.
run a mile in six minutes, walk a mile in twenty, put two steps together and call it quits?
fall asleep standing up!
be awake now and then!
Okay, now add to it. Some humor for the folks out there. What would you do if you weren't so tired.
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If I weren't so tired I'd wake up at 3:00 in the morning and check my email! OH, wait I already do that!
That is why I'm so damn tired! ;D
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DO THE DISHES :o Not me. Let Ann do the dishes and cook, hoover, laundry.shopping Plus anything else to do with the house the Cleaning or the kitchen. Which I keep a wide berth off. Not a new man. I sometimes have to hunt the remote control down, make the bed, seeing as I am usually last out of it! Boy it's hard work being a man! No wonder I am alway so tired ;D
OK! Now waiting for the insults from the New Woman! :-\
;D Kevno ;D
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I'm hardly ever not tired :D I figured it was just a way of life for dialysis people. I'm not sure I would know what it feels like to not be tired. ;)
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I'm just tired of doing dialysis. Tired of taking pills. Find if I stay busy, don't notice how tired I am, but stop for a bit and its time for a nap:)
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I know the feeling. I would do things like clean the house, do dishes, cook dinner, but ....
Say it with me....I am too darn.........tired!
Katherine
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I am working on developing a new word to encompass the tired feeling a dialyis patient feels all the time.
dialystired
ummm. too awkward
tiredysis
nahh.. sounds like a car part from Pep Boys
diatiredlysis
oh Lordy. It MUST be the late night!
rundowndialysispatient
Nahh...too sick like
tiredology- the science of being tired. >:D
tiredessence- the essence of being tired. :D
Ohhh getting worse, not better.
tiredallthetime
tiredmostofthetime
justplaintired
hmmmm.....
I need a thesaurus. After I consult one, I will be back with more silliness!
Katherine
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I'm back. Went to the thesaurus and found these words:
Extremely tired: bleary, dead, drained, exhausted, fatigued, rundown, spent, wearied, weariful, weary, worn-down, worn-out. Informal: beat, bushed, tuckered (out). Slang: done in, fagged (out), pooped (out). Idioms: all in, ready to drop.
Still not quite the word I am searching for...
So the search continues. Maybe someone out there with better word skills can combine some words to describe the feeling.
Katherine
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English slang ;D
Neckered
Then the usual ones.
ucked with a (F)infront ::)
Shattered
Kevno
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Those are good ones. Noone could figure out what you meant when you say you are neckered. >:D
Still looking.... The word is somewhere out there!
Katherine
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Dialysis and Fatigue seem to go hand in hand, but I know exactly what you mean.
I've tried Ambien, Levitra, Tylenol PM, Nyquil and banging my head into a wall, and I still can't get five to six hours of complete, uninterrupted sleep. In the middle of the day, between my two jobs, I grab my Steeler pillow and lie on the floor of my office.
Fortunately, due to the immunosuppressives from my first transplant, I'm only 5'7" so I fit perfectly behind my office desk. I flip off the lights, throw the pillow down and usually don't sleep, but just lying down feels better and recharges me a little.
After a while, the lack of sleep and rigorous Dialysis treatments turn me into Zombie Stacy. I don't feel sad or happy, joyful or depressed. I don't feel anything anymore really.
And I miss that about myself.
Everything is a muted grey and color is a faded memory.
And all because of kidney failure.
Sigh.
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try this one out and see how you like it
dialyspent ;)
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You said it perfectly, I'm tired all the time too. Especially lately right after a treatment. I'd ask my doctor for help, but I never, ever see her at the clinic. I'm going to make an appointment at her clinic on the other side of town. I'm either getting too much or too little Dialysis, I don't really know.
Just know that you're not alone.
Stacy Without An E
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I am dialyspent...Now that was clever. I never thought of it that way.
Katherine
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_Can_ you have too much dialysis? :)
You can surely have too little.....most in-center patients are. Quite a few of the impatient patients ( :o )
on here doing it @ home probably are too!! :o
Well, I'm getting a fair whack - 3 x 9 nights & a 1 x 6 Sunday evening = 33hours a week. And guess what!?
- I _still_ get the 'washed out after dialysis' feeling after every session.
Since I dx every work night (M/W/F), my days off are a catch-up on sleep morning & a lounge-lizard arvo.
But hey! - I'm fine on workdays ... :( boo-hoo :'(
Now if I could get out on permanent disability, those 'good' days would be mine too!! ::) 8) ...can't
see it happening for a while tho!
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Just freakin' freakin' tired and bitchy all the time now.
The test stress at school is horrendous this week. I want off!!!!
The stress turns me bitchy and mean. Watch out even though I am sitting in the back, I am still a mighty powerful voice.
Katherine
Yes, I am sitting in the back and still bitching!
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I wrote and gave this speech at Toastmasters recently. Maybe it will help our nonsleepers to sleep.
Can You Sleep?
Sleep is not merely a “time out” from our busy routines; it is essential for good health, mental and emotional functioning and safety. For instance, researchers have found that people with chronic insomnia are more likely than others to develop several kinds of psychiatric problems, and are also likely to make greater use of healthcare services.
Some Before Sleep Ideas
• Maintain a regular bed and wake time schedule including weekends.
• Establish a regular, relaxing bedtime routine such as soaking in a hot bath or hot tub and then reading a book or listening to soothing music.
• Create a sleep-conducive environment that is dark, quiet, comfortable and cool
• Sleep on a comfortable mattress and pillows.
• Finish eating at least 2-3 hours before your regular bedtime.
• Exercise regularly. It is best to complete your workout at least a few hours before bedtime.
• Avoid caffeine (e.g. coffee, tea, soft drinks, chocolate) close to bedtime. It can keep you awake.
My Tips for Getting to Sleep
1. Basket of worries- put your worries in a basket and let them go.
2. Muscle relaxation techniques- head to toe relax each muscle group from head to toe.
3. Breathing exercises-concentrate on your breathing.
4. Cloud surfing: ask a cloud if you can surf on it.
5. Pool of relaxation: imagine a pool of warm water and you are soaking in it.
6. Purring tapes or music/relaxation tapes-Maria uses a purr of a cat to sleep. Soothing music can put your brain into a relaxed mode.
Tips from a website http://www.well.com/user/mick/insomnia/
Sleep with Your Head Facing North
And, obviously -- unless you have a particularly unusual body -- your feet facing south. This aligns your body with the magnetic field of the planet, bringing your own energies into harmony with those of the Earth. Sound like a pretty bizarre theory? Try it. You'll see what a difference it makes.
Imagine It's Time to Get Up
This is a neat one too. Kind of a variation on the previous technique. Imagine that you're not allowed to go to sleep. Imagine that your morning alarm has gone off and it's time to get up and go to work. You know how delicious that feeling is in the morning when it's time to get up but you're so tired and your eyes are very heavy and you shouldn't do it but you just want to fall right back to sleep for a few minutes more?
Well, we find you can often bring that about just by imagining as fully and realistically as possible that it's morning, that you have to get up, put your feet on a cold floor, stagger around the house, take a cold shower, and do whatever unpleasant things you associate with getting up in the morning. The more unpleasantly you can imagine it, the more you won't want to do it. And the more you'll just want to stay in bed and sleep. Try it. You'll be surprised how tired and sleepy your mind can make your body.
Don't Watch TV or Read Before Going to Bed
Toe Wiggling
Lie on your back (where you should be in the first place) and wiggle your toes up and down 12 times, wiggling the toes of both feet at the same time. This will relax your entire body, inside and out
Stomach Rubbing
Clockwise from navel outward then inward.
Organizations to Contact
Sleepfoundation.org
Sleep awareness week was March 27-April2
Sleep is as important as diet and exercise.
American Sleep Disorders Association
http://www.peaceful-sleep.com
sleepnet.com
Lots of information and books for sale on the web about sleep and remedies for sleep.
Hope it helps.
Katherine
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Hello Again
I too am very tired and sleep very little at night. I go to bed around 10pm and listen to talk radio. I complained to the doctor, and he prescribed ambien which did nothing. Now I take some other sleepaid he prescribed and sometimes it works. I am a hemo patient, and a sleep apnea patient. Sleeping on dialysis is very difficult for more than an hour due to the sleep apnea. I am looking for a job, but I consider myself unreliable due to the sleepiness and extreme physical pain. Be well and safe. Barry1
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A quote from Stacy_without_the_E " I don't feel sad or happy, joyful or depressed. I don't feel anything anymore really"
You couldn't be more right!! I thought I was depressed, but now that you say that, I think I just feel...well....nothing.
I don't think it helps being tired all the time either, it makes it a bit hard to have any sort of enthusiasm. I am pretty tired probably 95% of the time.
I am on nocturnal dialysis and I do 4x10 hours a week. I feel at my best the day after my night off. But there are days where I am just so tired, I cant even be bothered to eat. And then there are the days where I end up in bed all day because I just cant move. Thankfully since starting nocturnal this is getting less often). I truly admire people on dialysis who can manage to get themselves to work. Anyway I'm going for a nap now lol Will be back later on, got lots of reading to do on here.
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I got the job yearly contract the other day. For that kind of money I will get up and go to work tired next year. I am now earning in the 70s. A nice little pile of change for all the hard work I do as a teacher. I am learning how to gauge the tired with the really tired and take care of my self while on the job. I sit a lot more now than I used to when I am teaching the class.
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Thats great kitkaz, good luck to you!
I have been doing nothing/not working, since 2002, and its starting to drive me crazy!! It gives you a bit too much time to think. I think I am very unfit too, which I guess would contribute to my tiredness. I want to work, but I just don't feel ready mentally or physically. Some days I do, but most days I don't.
Bear, why cant you get disability???? I have been on it for 5 years. My initial application was rejected, but I appealed and got it.
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To be honest Amber, I haven't tried. largely 'cause I'm not hopeful, as my wife's a teacher & earns more than I do!! ::)
I do get a top-up from my Super fund. They have a scheme for "Total and Temporary Disablement", where, if you have
been off sick to the extent that you have used up all sick, annual leave, etc. they will pay 80% of your wage for up to
2 years (after which, if there's no change in your circumstances, they assume you are "Total and _Permanently_" disabled
and will pay out your Super in full, once you resign/retire from your employer. IN my case, this means they make up my
pay to 80% and I'm hoping they continue to do so (if Carmel or Caroline keep giving me the paperwork to prove it :) )
until Dec'07. Then I might be out!! Yay!! :D 8) Fingers x'd ::)
My wife has also dropped a day a week(Mondays), starting last week, to make her life a bit easier. So between us we
have dropped about $22kp.a.....but I don't think I'll need to take up the saxophone & go out with the dog just yet ;D
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Oh ok I get ya. You might not get anything anyway. My other half earns an average wage which even that affects how much I get. At the moment I get a bit less than half than when I was getting a full pension. Its rediculous!! They class my partners wage as my own "income". Its not like he hands me his pay cheque every week!
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I got a word :P,
DIALYSHITS
ok, ok, sorry :-\ , i just wanted to get in on this, lol, although there are some pretty good ones posted here ;)
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kitkatz wrote:
I am tired when I go to bed at night.
I am tired when I get up in the morning.
I am tired before dialysis.
I am tired after dialysis.
I am tired before I eat
I am tired after I eat.
I am tired before I take meds.
I am tired after I take meds.
I am tired when I go to wok.
I am tired at work.
I am tired when I come home after work
You know, maybe it is just me, but I get the impression that you might be TIRED!
All kidding aside, I know where you are coming from. I feel like I am a walking zombie have the time. I go to sleep around 9 every night and I am wide awake by 2:30 for some reason. I can never fall back to sleep. Of course it is a known fact that ESRD patient suffer from insomnia, although I don't understand why, we do :(
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RichnStacy, I hear ya!! I am soooo tired during the day, then if I stay up real late I end up wide awake like I am now. Well, I am actually tired, but I know I wouldn't be able to get to sleep. I'm waiting for my other half to get home, so I'm hoping when he gets home ill get into sleep mode. I get told from various people that if I sleep during the day then of course I'm not going to sleep at night. Its just not the case with me. If I don't put myself in bed of an afternoon, I will fall asleep anyway, unless I'm out shopping or whatever. Some nights ill have no trouble going to sleep after an arvo nap, but other nights its hard.
I have found it helps if I take my gabapentin around lunchtime, as it starts to really kick in by bed time. If I take it in the morning, by late afternoon I'm dopey. If I take it too late in the afternoon/night, I'm up all night. It is a medication for neuro pain, but it definitely helps me sleep. It eases that awful crawly feeling you get in your feet, and the restlessness. I wish I had of been put on it loooong ago.
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Amber79 wrote:
RichnStacy, I hear ya!! I am soooo tired during the day, then if I stay up real late I end up wide awake like I am now
Yep, as usual I went to bed a little after 10 last night and I was up and fully awake by 1:00a.m.
I get told from various people that if I sleep during the day then of course I'm not going to sleep at night
I understand the concept, that if you sleep during the day you will not sleep as well at night. I have been told the same thing as you have. What people fail to realize though is that if you don't sleep for several nights it is next to impossible to stay awake. Eventually my primary physician told me to sleep whenever I could, and that is what I do. :)
I have found it helps if I take my gabapentin around lunchtime, as it starts to really kick in by bed time
Is this a sleeping aid? Why does it take so long to start working? Is it a time release type medication?
I wish I had of been put on it loooong ago
Usually I just take something from over the counter to help me sleep because I have found that the prescription type sleeping aids make me sleep, but I have lasting effects all day the next day and I am worse off than if I have had no sleep at all. :)
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Richnstacy, its not a sleeping aid, its a medication to help with the neurological pain in my feet. It just happens to also help me sleep as it eases the pain, as well as the crawly icky feeling in my feet, and has settled the restless legs. I guess it sort of helps me to relax a bit.
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amber79 wrote:
Richnstacy, its not a sleeping aid, its a medication to help with the neurological pain in my feet. It just happens to also help me sleep as it eases the pain, as well as the crawly icky feeling in my feet, and has settled the restless legs. I guess it sort of helps me to relax a bit.
Well I am glad it helps you relax some but sorry you have to take it in the first place for the neurological problems. That must suck! If you don't mind me asking, is the neurological pain in your feet due to your kidney disease or something else? If this is too personal tell me to shut up and mind my own business :)
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I am sooo stressed out right now I think I am too stressed to know if I am tired or not. I got so tired last night it took me five minutes of sitting the car to finally get it going and drive home from the hospital where hubby is. Tonight I called a friend and we went to dinner. I hate to eat alone. I am tired, tired, tired. I think I am tired!
Katherine
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Richnstacy, it is a part of kidney failure, mainly due to being very underdialysed for some time. I was on PD for 18 months, and in that time I wasnt getting the best clearances. It was ok while I had some kidney function left, but as soon as that dropped off my levels kept going up and up. It is called peripheral neuropathy. The nerves in your limbs die off (I think). My toes are completely numb, and it has spread halfway up my calf. It is hard to describe. My feet are numb but painful. I can feel pressure and a bit more in some areas. I get a sort of crawly feeling when they are touched (by anything), which is especially bad in bed with the sheets on them. I have to sleep with my legs hanging out the side of the bed most nights.
Since Ive been taking this drug, it has helped a great deal and I have been able to sleep alot better, and so has my other half :)
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Amber79 wrote:
Richnstacy, it is a part of kidney failure, mainly due to being very underdialysed for some time. I was on PD for 18 months, and in that time I wasnt getting the best clearances
Amber, thank you for the explanation. I wasn't sure if it was related to your kidney problems or not.
You mentioned that your nerves die off because of poor clearance. Is this something that can improve if you are getting a good clearance or something that is permanent? Either way I know it must suck big time cause I get the crawly feelings after dialysis where I feel like I want to scream and I am sure it is nothing in comparison to what you have to go through. I am glad they were able to find something to give you some relief. God I HATE this disease!!!
Richard
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I had it when I was younger, although not as bad as I do now. I was on PD for 9 months at the time, and due to poor clearances I was looking at HD. But I was lucky and got a kidney. After I got the transplant, the nerves came back, and my feet were fine. It is supposed to improve over time with the nocturnal. I do get less pain now, but the numbness is still there.
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Amber79 wrote:
After I got the transplant, the nerves came back, and my feet were fine. It is supposed to improve over time with the nocturnal. I do get less pain now, but the numbness is still there.
I am glad to hear that you get less pain now, but am sorry you get any at all. That must be a miserable feeling to have to deal with. Hopefully over time the nerves will regenerate and quit giving you any problems at all. Keeping my fingers crossed for you :)
How long did your transplant last? You are a brave soul. I am scared to death of all of the complications they tell you about when you are going through your eval. and have decided, at this time, that I don't want one, although I am not sure if I would pass the inspection, so to speak, to even be eligible to receive one with all of my medical problems. I just don't need to add to any of my problems that I already have and some of the things they warned about, like diabetes, is just too much to chance right now. At least I can still have my sweets :)
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I think myself lucky, there are people far worse off than me. I am going for another transplant because I think the risks associated with long term dialysis are more dangerous than those associated with having a transplant. Speak to someone about it and get all the info, then make up your mind. If it is a good transplant, Its worth it. Thats just my opinion, going on my own experience. Whilst I remain on dialysis I dont think I will ever be able to work or have kids, travel etc. Which I really dont want.
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Well I started this thread, so I better add to it.
Yes, I am still tired if anyone wants to know. I really would like to sleep for several days and not move. But school has started and I will just have to get used to being tired and on the run again.
(Complain, complain, complain!)
Katherine
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Ya I am starting work soon and I will miss sleeping in :( I am tired all the time but I am no where near how I was when I first lost my transplant in 2001. My hemoglobin was 66 (minimum for women is 120) in Canadian numbers ... the nurse said she was amazed I could function. Well it was hard. I was holding down a 12-hr shift when I could not even bike on my bicycle even one block! Man I was in tears I was so frustrated thinking "wth is wrong with me!?!?" I should have figured it out but I didn't have hemoglobin problems when I first lost my original kidneys .. so how was I to know?
I am still tired all the time but nothing in comparison .. so I will be going back to work .. 5 hrs .. 3 times per week.
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Good luck Angie with work. I hope all goes well for you.
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Good luck Angie with work. I hope all goes well for you.
Thank you Kitkatz :)
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... I am still tired all the time but nothing in comparison .. so I will be going back to work .. 5 hrs .. 3 times per week.
Wonderful! Hope it goes well and you don't get too tired.
Lorelle
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I am happy for you. I join with the others in wishing success. Pace yourself and remember, we are taking one day at a time.
Blessings!
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thank you :) It means a LOT
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Now remember, Angie, the first few days will be exhausting. You will wonder why the hell are you so tired after only a few hours work and why are you doing this. Just get up and go to work, then go to dialysis. Relax and enjoy what you are doing. Remember to rest if you get too tired. I have to sit down sometimes when I am teaching and teach from a chair. Remember to eat breakfast so you remain strong for work. Start slowly and build up to full power after a few weeks. Enjoy yourself!
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I'm not even on dialysis yet and I get incredibly tired. I have wondered if it the PKD, the organ weight, the stress, the sleep loss--or perhaps worse-- just being over 50?
Kitkatz, do you find your exhaustion has increased a lot since your spouse became disabled? It may at least partially be the added stress on top of the dialysis?
I find working hard sometimes. I marvel that you are able to do it!!
Mom 3
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Oh Lordy! You have no idea how tired I became with all of the hubby stuff added to it. Exhaustion city! It has gotten better, but is still there a lot. I just keep going ya know like that Energizer Bunny.
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One of the most common complaints of dialysis patients is being tired, more commonly from post dialysis fatigue. Most if not all doctors and the medical community fail to address the issue.
One thing that can help is to increase your endurance. Yes that means exercise. ;)
One other thing I know of that is said to help is deca durabolin. Deca was the main choice for treatment of anemia before epo came out.
Anyway a study was done in 99 that showed positive results from the use of deca in the areas of post dialysis fatigue. However trying to get a doctor to actually prescribe an anabolic will more likely than not go over like a lead balloon. Doctors hear the word "steroid" and freak.
Find the news release on the study at:
http://pub.ucsf.edu/newsservices/releases/2004010773/
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I just get so tired of not being able to do all the things i did before this disease. Thats both physical and mental issues. Was an auto mechanic all them years, and now its a chore just to change a tire. Walking is even a chore for me these days, as my back operation seems to be failing with the calcium/ phosphorus issues we all face. Call me "crunchy"
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I'm not even on dialysis yet and I get incredibly tired. I have wondered if it the PKD, the organ weight, the stress, the sleep loss--or perhaps worse-- just being over 50? ...
Mom 3
Debilitating fatigue is one of the major symptoms of PKD, even for some patients with almost normal blood values. There are different types of PKD. PKD1 and PKD2 have been identified for a while -- still working on gene location of 3 and 4 -- the fatigue may be a characteristic of the particular type you have. Currently there is not much to be gained by genetic testing to identify which type you have but in the future that may be part of the diagnostics and treatments.
My husband has days when he spends most of his time in bed and sleeps an hour at a time around the clock. After a couple of days he rallies and has a few good days when takes a good nap or two but stays active the rest of the day. That cycle started many, many months ago when his kidney function was still well above 50%, but it has gotten increasingly worse as his function has declined -- the span of bad days has gotten longer and the good days fewer.
You should also be sure you're not anemic - check ferritin(sp?) levels as well as hemoglobin, monitor your white blood cell count closely to check for cyst infections which may give no other evidence of their presence other than the elevated count, and be sure you are well informed on the latest testing and treatment for hypothyroidism.
Being soooo tired all of the time is almost as debilitating as chronic pain and PKD patients often have both.
BTW, the difference in the progression on you and your son may be due to a genetic mutation or a triggering mechanism which has affected the earlier manifestation and decline. My husband's son at age 33 is now at the level of function my husband was at age 60. Sometime it happens the other way and a parent dies young and the child lives to be on slightly affected in their 70s. So far the fatigue also seems to be unpredictable and often appears to be unrelated to the decline in kidney function.
Be sure you emphasize the fatigue EVERY TIME you see the Neph. I think those notes in my husband's records were partly responsible for him getting approved for disability less than two months after he applied.
Lorelle
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That is so helpful! I have wondered if it was all "in my head" or just depression or something! ;) I am going beck to school next week but now I won't feel so guilty if I lie down on the couch after work!! Last year I tried to work a second job and I really thought it might kill me. I was so exhausted I honestly wasn't safe to drive home at times.
I do mention my fatigue but my doctors have never taken it at all seriously. and I'll just hope these new doctors will do so.
So federal disability is an option BEFORE dialysis? I know anyone can get it in the US after dialysis starts but really thought it was not an option to even consider until that point. Thought I'd have to settle for a pittance from the state, if I got anything!
I still WANT to work. Takes my mind off my worries and grief about my son (who has only ONE cyst in his kidneys!) and adds so much meaning to my life.
I'm sure Katharine feels the same about her job! Do you have help in the classroom, Katharine? An aide, assistant, associate or co-teacher? If not, is that a possibility?
Mom3
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So federal disability is an option BEFORE dialysis? I know anyone can get it in the US after dialysis starts but really thought it was not an option to even consider until that point. Thought I'd have to settle for a pittance from the state, if I got anything!
Mom3
The thing is to apply sooner than later. In most cases you will be turned down by Social Security the first time you apply. They pretty much do this to everyone as a way to delay the process in hopes the person will not reapply. If denied reapply and that is usually when it will go through. I have even heard of people already on dialysis that were denied the first time they applied. ???
Anyway even if denied the first time and approved at a later date, last I heard was that they are supposed to back pay a portion from the very first day you applied.
If people cannot qualify for Social Security because of limited work history there is also the SSI program that will pay in the event of disability when the person has no work history or not enough credits to qualify for disability from Social Security.
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Thanks Big Sky. My son is on SSI. The social workers told him it was automatic to be approved AFTER dialysis (but probably only if one is not working at all...) He was very disabled before he went on dialysis. Soaring blood pressures that couldn't be controlled, problems walking etc and he was STILL turned down just a couple of months before dialysis.
Apparently being young makes it a lot harder!! A reason to be glad I'm no longer young??
Mom 3
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Now remember, Angie, the first few days will be exhausting. You will wonder why the hell are you so tired after only a few hours work and why are you doing this. Just get up and go to work, then go to dialysis. Relax and enjoy what you are doing. Remember to rest if you get too tired. I have to sit down sometimes when I am teaching and teach from a chair. Remember to eat breakfast so you remain strong for work. Start slowly and build up to full power after a few weeks. Enjoy yourself!
Thank you! That is really appreciated! They asked me how long I can stand for before sitting and I didn't know what to tell them so I said an hour. I figure that way I would be covering my butt! Hopefully it works out! I will keep you all updated on this :) Thanks for caring :D
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... So federal disability is an option BEFORE dialysis? ... Mom3
Yes, but it is extremely difficult for anyone w/ PKD to qualify until kidney failure actually starts and their creatinine is above 4.0, and even then some of the decision makers are reluctant to approve the claim and you have to appeal their rulings or reapply. As BigSky said -- the sooner the better. When it is finally approved, depending on circumstances, it may pay retroactive to when you first applied.
That's one of the main reasons why it is so important that ALL of your symptoms be noted at every doctor visit. Patients who do not complain about the PKD fatigue, pain, insomnia, nausea, etc., at every visit will not have the documentation required for claim approval. Also, if you put off your doctor visits for several months, and do not have frequent bloodwork it's harder to get approval. My husband went at least once every three months, and then once a month, with blood drawn for complete testing before every visit.
He applied for disability at the end of January and his first check came in March. I give the Neph a lot of the credit -- he made detailed notes. (BTW, I told him he better make complete notes, because if Mike was turned down for disability when he got too sick and too tired to work, I was going to blame him. :o >:( >:D >:( )
The last time he pushed himself and tried to work he had nausea, vomiting and diarrhea for almost two days. He was trying to work out of town and I was soooo worried about him! :'( Mike hates not working and is hoping the NxStage will allow him to go back to work but he knows he can't work now -- he stays much too tired. He has to push himself to do much other than his cooking and laundry. We are so grateful for the disability checks -- not much $$$ but a huge help. My business is small and was never intended to be our sole support. With the disability checks we can make it, barring unforeseen problems, until he gets a NxStage machine and (we hope) gets back to work.
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You first directed me to this site and you have given me some great information Mrs. Black... I am not yet ready to go the disability route but is good to know it is out there, even prior to dialysis. Does your husband have PLD and an extremely enlarged liver also? I think that this liver weight is more of a problem than the nephrologists give credit to. After all the liver part is not really their area, right?
Hope it goes well for your spouse on the Nx Stage machine and he will be able to do more and that Angie and Katharine do well on their jobs! Working when you have a chronic disease is truly hard.
Mom3 (I re-read but that spell ck has gone out on me still again!!)
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Mom3
Since I am a special ed teacher I have an aide in my classroom. She an I have worked together going on eight years now. She is WONDERFUL. Let me tell you how to get what you need from your school district while you are working.
1. Get a letter from the social worker at your clinic describing ESRD and dialysis. Have them write that it is a debilitating disease that does not get better only worsens.
2. Have the doctor write you a diagnosis and a prognosis and a treatment plan for the school district to have on file.
3. Schedule a meeting with your principal and a union representative. Be sure to tell the union rep what you are going to talk about at the meeting.
4. Think of 2 or 3 things you want from the district that will help you in the classroom
a. an aide while kids are in the room with you.
b. Frequent breaks, where another teacher will relieve you if needed.
c. Longer lunch or break time.
d. Or what ever you feel you want from them that will help you.
5. Then go talk to the principal of your site and ask for what you need.
6. If this does not get you anywhere, call the district office, Human Resources and tell them that you are asking for a 504 plan to be implemented at your school site. They will jump pretty high after that request. Ask for what you want again.
7. Go to the 504 meeting with your documents in hand with a union rep with you. The 504 plan is accommodations made to your work site or schedule because you have a handicapping condition.
Now I know about this 504 plan in the United States. It is a law here. Your work has to give you accommodations if you need them. I have NEVER had to go this far. Whatever I have needed the school site and district have given me. I have a six hour aide. She was five hours the first few years, then I asked for an extra hour because I have kids six hours a day and I was getting exhausted running the room just one hour by myself. I just have to work with them on getting a substitute aide in when my aide is out sick.
I love my school district. They have rocked for me these last eight years. I have worked for them for ten years now!
Katherine
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... Does your husband have PLD and an extremely enlarged liver also? I think that this liver weight is more of a problem than the nephrologists give credit to. After all the liver part is not really their area, right?
Hope it goes well for your spouse on the Nx Stage machine and he will be able to do more and that Angie and Katharine do well on their jobs! Working when you have a chronic disease is truly hard.
Mom3 (I re-read but that spell ck has gone out on me still again!!)
Thanks for the good wishes! Were holding our breath and hoping that getting the NxStage is not difficult. I'll be calling the clinic in Atlanta again on Tues or Wed to confirm that he is still a go. I'm waiting until after his next Neph appointment on Tues, when we get results of his 24 hour urine collection and last blood draw so they can update his file in Atlanta.
As far as his liver, we don't know. He may have all of the PKD effects - brain aneurysm, liver cysts, damaged heart valves and diverticulitis -- since we don't have insurance we're waiting until Medicare will pay for all of the testing. You're right about the Nephs not being that interested in the other disorders. His GP did suggest a brain scan once and the Neph did ask if he'd had one done or wanted one done -- but nothing else and nothing since that initial visit. From the expansion of his waistline I suspect both kidneys and his liver are severely enlarged. The rest of his body is not that fat, though he does have edema in his extremeties. He weighed between 205 and 220 for many years; he currently weighs about 270. I suspect the cysts and excess fluid account for almost 50 pounds of the gain. Carrying around that much excess weight has to be tiring.
Have you ever had your liver, brain, heart, intestines checked? I would think the more organs involved the worse the symptoms would be, especially the fatigue.
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Ive given up saying Im tired. Last time I saw the doctor (not my usual one), he didnt even acknowledge it when I said Ive been really tired :-\
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My condition was first diagnosed from the enlargement in my liver. My gynecologist thought I had liver cancer and sent me for an ultra sound. When they found a LOT of liver cysts they said I needed to be checked for kidney cysts--and I ended up at the nephrologist.
I am carrying at least that much extra weight and the wt alone is somewhat of a handicapping condition! Bad for balance, too.
My school is a state agency and I am an "associate teacher" so I am not as valued as you probably are Katharine. (My professional career was in human services and I essentially gave it up to care for my son who became sick in the 7th grade. Still worked but needed no more than 40 hour weeks and knew I'd have absences so I had to get out of situations where I was virtually indispensable. Now if I'm out they can get someone to sub or in some cases actually do without me for a while. My work is not happy about working with me at all and I feel pretty insecure. We do have a teacher at our school who has had a transplant and they are really good to him. He is very valued because it is hard to get deaf ed/special ed teachers as you know.) It's a new year and we'll see how it goes!!
I'm really glad your school it doing what they should for you. Hopefully your educator's association backs you, too.
Sounds like they aren't teaching you restraint and all that, the way they did me. I went through the training but I was honest and said it will have to be a truly grave emergency and no other options of any kind before I try to use this stuff at this point in my life. Incidentally the transplanted teacher and a teacher on chemo were in my class...Not too realistic?
Wishing you the best with getting the NX stage. I believe that once dialysis is started things will look up, Mr and Mrs Black. I certainly hope so!
Hoping your year goes well. I'd value a job and employer who worked with me that way, too, Katharine. Work is a good medicine when it is going well...
Mom 3 (My computer just must have moods too. Spell ck is working again.)
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I have been tired all my life... first from Cystic Fibrosis, then diabetes, and now kidney failure. I was feeling really bummed out when I read in my Health Magazine that on average Americans feel "awake" only 17 days a year. That made me feel a lot better... maybe I am not so abnormal... I feel awake at least 17. :)
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I have been tired all my life... first from Cystic Fibrosis, then diabetes, and now kidney failure. I was feeling really bummed out when I read in my Health Magazine that on average Americans feel "awake" only 17 days a year. That made me feel a lot better... maybe I am not so abnormal... I feel awake at least 17. :)
Wow only 17 days? And that is the Average Americans? Wow!
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So, since I am not an average American I must not be awake those seventeen days. LOL Just great! Here I am thinking I am awake and at work and I am actually sleeping in. I simply must notify someone about this lack of awakening! ;D ;D ;D
I have another friend in the same school district who is on dialysis and the district is acting like they want to get rid of her. She is a teacher's aide and has been with the district since she started working at 18 years of age. She is 43 now. Christ! You would think they would help a long term employee out. I am helping her get through the mess.
Yes I am a valued employee, since no one else would take my job! ;D They have been trying to hire an RSP teacher for our site for two years now. Almost impossible to get people with any experience at all.
Katherine
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... Does your husband have PLD and an extremely enlarged liver also? I think that this liver weight is more of a problem than the nephrologists give credit to. After all the liver part is not really their area, right?
Hope it goes well for your spouse on the Nx Stage machine and he will be able to do more and that Angie and Katharine do well on their jobs! Working when you have a chronic disease is truly hard.
Mom3 (I re-read but that spell ck has gone out on me still again!!)
Thanks for the good wishes! Were holding our breath and hoping that getting the NxStage is not difficult. I'll be calling the clinic in Atlanta again on Tues or Wed to confirm that he is still a go. I'm waiting until after his next Neph appointment on Tues, when we get results of his 24 hour urine collection and last blood draw so they can update his file in Atlanta.
As far as his liver, we don't know. He may have all of the PKD effects - brain aneurysm, liver cysts, damaged heart valves and diverticulitis -- since we don't have insurance we're waiting until Medicare will pay for all of the testing. You're right about the Nephs not being that interested in the other disorders. His GP did suggest a brain scan once and the Neph did ask if he'd had one done or wanted one done -- but nothing else and nothing since that initial visit. From the expansion of his waistline I suspect both kidneys and his liver are severely enlarged. The rest of his body is not that fat, though he does have edema in his extremeties. He weighed between 205 and 220 for many years; he currently weighs about 270. I suspect the cysts and excess fluid account for almost 50 pounds of the gain. Carrying around that much excess weight has to be tiring.
Have you ever had your liver, brain, heart, intestines checked? I would think the more organs involved the worse the symptoms would be, especially the fatigue.
Your neph should be able to order the scans and tests. I definitely would be getting them done asap. While nephs specialise in kidneys, they do have a general knowledge of other areas, some more than others. If they suspect something is wrong they can get these tests done and refer you to the appropriate specialist. That is how it works here.
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I had the brain scan after a concussion--no aneurysms.
The specialist I was referred to for my liver, an elderly gastro enterologist, didn't know what PKD WAS and I had to explain it to him...! Basically I was told over and over that my 40 lbs of liver was no big deal since it was still functioning and I shouldn't worry about it.
Pain, balance problems, pressure on the spleen that put me in the hospital for a week, a gall stone that would be very complicated to operate on (I take actigall and it works really well by the way!) but it's no big deal.
My research on the internet has said for those of us who have extreme encystation of the liver it CAN BE a big deal, a really big deal ending up in surgery or liver dialysis, but locally so far the doctors just look at the labs and ignore the liver. Perhaps you'll have better luck with your liver, Mr. Black. I do hope so...
My job is a glorified aide, Katharine. I am highly qualified under NCLB and ought to be valued, but I'm less valued than a certified teacher. The experience one has with trying to work and how one is treated on the job has a lot to do with what job one holds. And how you are accommodated--IF you are accommodated at all--can have everything to do with how exhausted you are and whether you can cope with holding the job. I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible! :-[
Mom 3
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I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible! :-[
Mom 3
Ya I could not have kept my old 12-hr shift job that I had for 9 years. I also could not have kept my Hot Deli 8hr shift job at the store I am still at. I am just glad they finally transferred me to a new department. I hope I can keep up. Just 5hr shifts 3 days a week. But I have been out of work for a year. I hope it doesn't tire me out. I still don't know my new position job description though.
When any of you are teaching how many hours do you work in a day?
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I am at school from 7a.m. till 2p.m. when I am teaching. Sometimes on TTh I am there until 3p.m.
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I am at school from 7a.m. till 2p.m. when I am teaching. Sometimes on TTh I am there until 3p.m.
wow that is an 8 hr day! That would tire me out :P
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Sure enough!
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I had the brain scan after a concussion--no aneurysms.
The specialist I was referred to for my liver, an elderly gastro enterologist, didn't know what PKD WAS and I had to explain it to him...! Basically I was told over and over that my 40 lbs of liver was no big deal since it was still functioning and I shouldn't worry about it.
Pain, balance problems, pressure on the spleen that put me in the hospital for a week, a gall stone that would be very complicated to operate on (I take actigall and it works really well by the way!) but it's no big deal.
My research on the internet has said for those of us who have extreme encystation of the liver it CAN BE a big deal, a really big deal ending up in surgery or liver dialysis, but locally so far the doctors just look at the labs and ignore the liver. Perhaps you'll have better luck with your liver, Mr. Black. I do hope so...
My job is a glorified aide, Katharine. I am highly qualified under NCLB and ought to be valued, but I'm less valued than a certified teacher. The experience one has with trying to work and how one is treated on the job has a lot to do with what job one holds. And how you are accommodated--IF you are accommodated at all--can have everything to do with how exhausted you are and whether you can cope with holding the job. I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible! :-[
Mom 3
OMG how can a liver that enlarged not be a problem!!! What are your LFTs like?
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Angie,I leave at 7:00 arrive by 7:45 and get off at 3:15, unless I have bus duty, when I work until 4:30. My drive home is 45 minutes. Last year I tutored after school two evenings a week, not getting home until 7:00 pm. It is the understatement to say it was all too much! >:( Just thinking about the school schedule alone makes me tired!
What are LTFs exactly? I assume its related to liver function? Mine functions remarkably well to be mostly cysts. (Five cysts the size of grapefruits and innumerable smaller cysts according to CAT scans. As one surgeon exclaimed after studying my CAT scan--"Your liver function is a miracle! There nothing left to function, but it does!") But according to other doctors "It's really no big deal."
Katharine, I'm glad you have a good schedule and they work with you. Of course I know you take a lot home. All teachers do! Can you work on IEPs while on dialysis? The paperwork for teaching has become overwhelming.
Mom 3
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LFT=Liver function tests. I guess if yours are good then they arent real worried about it. The liver is an amazing organ!
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I DO NOT take any work home with me. I never work on it when I am home, so why drag it with me and back and forth. I know this sounds strange, but it works for me. I do all of the paperwork and IEPs at school. I just make the time and do them as needed. There were maybe five days I brought papers home last year and that was for the writing celebration judging.
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WOW! If you get tired of teaching just write books or do inservices on organization. Teachers NEED YOU to teach them as much or more than your students need you, Kitzkatz. That is truly amazing.
Mom 3
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Doing work at home is a bit difficult for me as well. The only thing I bring home would be multiple choice tests which my daughter can help me correct. I do some of my work on dialysis, though.
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My mother actually had the nerve to ask: Why are you so tired this week?
I almost lost my mind over her. DIALYSIS! WORK! TEACHING ALL DAY!
If I were not tired I would be worried..
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Yep, in case anyone was wondering, I am still tired over here. Stressed out and trying hard not to take it out of people I care about. I get on line and have to remind myself not to be such a smart ass when I am answering some of the threads. Just because I am tired and get smart assy because of it, does not mean everyone wants a piece of it!
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We feel ya Kit, we understand... Well, i know i do. You have gone through so much, i am amazed and i admire you for your strength, yess, you have strength, if you didnt you wouldnt've made it this far, Keep on Keepin' on girlfriend, we are here for you :grouphug;
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Normally I'm fine, but now and then I do get tired with work and dialysis. Getting tired from time to time just means you are still human. Are your blood results as good as they can be. What is your haemoglobin level at?
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I am tired all the time.
Go to bed tired, get up tired, stay tired.
Struggle to keep blood count up with shots and iron iv.
don't think I'd even feel sick if I weren't so tired.
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I think it's great that even though we can all agree that we are pooped most of the time, but we still find the time and energy to come and visit here on this website. We must really care about each other! I think that is just fantastic!
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whew - ok - I'm not crazy! When people ask me lately how I feel, I say "I'm tired of being tired" I'm also on sleeping meds and I thought it was odd since I'm so tired. If I'm so tired, why can't I sleep!!! One day this week I did slept 22 out of 24 hours for no reason though. Felt a little better the next day, but still no energy. At this point, if I did have some energy, I'm not sure what I would do with it ... wait, yes I do! I would make the space in my house for all the PD supplies that the dialysis fairy will be delievering soon.
Good to know I'm not alone ....
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Hey, wait a gosh darn pickin' minute here, you get a fairy delivering your supplies, that is no fair, i get this big muscular, clean shaven, good smellin', polite and friendly gentleman deliver mine, life is just not fair now is it ::)
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It is strange how I can go to bed so tired and then not
sleep well. Last night I read for a while, fell asleep about midnight, was wide
awake by 2, still awake after 4, dozed off until around 5 was pretty much awake then til I got up.
It must be a cycle that doesn't end. always seems that way. seems like when we are tired
we would sleep better, or are we tired because we don't sleep well?
I am not working now because of my broken hand but I do seem to have more get up and
go when I have to get up and get to work or somewhere else. My broken hand has really
drained my energy right now as everything is more difficult and takes longer. I'm reading and
trying to relax but it doesn't help the tiredness it seems. I see posts on this site during all
hours so everyone else must not sleep well either.
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I've been going through the same cycles of sleep and restlessness. Weird for me, as I've never had a problem sleeping. My time in the chair is also getting more difficult, and I'm finding myself getting anxious.
Today I woke up exhausted, and can't figure out why. Dialysis last night wasn't anything unusual....
I've only been doing this 7 months or so. Those who have been burdened for years must be close to sainthood by now. ;)
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...As far as his liver, we don't know. He may have all of the PKD effects - brain aneurysm, liver cysts, damaged heart valves and diverticulitis -- since we don't have insurance we're waiting until Medicare will pay for all of the testing. You're right about the Nephs not being that interested in the other disorders. His GP did suggest a brain scan once and the Neph did ask if he'd had one done or wanted one done -- but nothing else and nothing since that initial visit. From the expansion of his waistline I suspect both kidneys and his liver are severely enlarged. The rest of his body is not that fat, though he does have edema in his extremeties. He weighed between 205 and 220 for many years; he currently weighs about 270. I suspect the cysts and excess fluid account for almost 50 pounds of the gain. Carrying around that much excess weight has to be tiring.
Have you ever had your liver, brain, heart, intestines checked? I would think the more organs involved the worse the symptoms would be, especially the fatigue.
Your neph should be able to order the scans and tests. I definitely would be getting them done asap. While nephs specialise in kidneys, they do have a general knowledge of other areas, some more than others. If they suspect something is wrong they can get these tests done and refer you to the appropriate specialist. That is how it works here.
[Don't know how I missed this. ???] Yes, I agree, Amber. He should have the tests as soon as possible -- BUT, with no insurance we have to wait until he is covered by Medicare.
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I'm tired too and fortunately not on dialysis, but suffer depression (who doesn't?) and caregiver to my dad who just recently stopped dialysis. Is there a connection here? LOL? Yes, TIRED more often than not and this has been going on for years; not days/weeks.........ugh..........................................
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I'm tired too and fortunately not on dialysis, but suffer depression (who doesn't?) and caregiver to my dad who just recently stopped dialysis. Is there a connection here? LOL? Yes, TIRED more often than not and this has been going on for years; not days/weeks.........ugh..........................................
I'm so sorry. Let Hospice do as much of the work as possible and enjoy the time you have with your dad. :cuddle;
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Wow! I started something here!
I go out to go shopping and I used to be able to do the entire mall, have lunch, then come home and do things around the house. Not anymore. I barely do half of the mall here before I have to sit down and rest!
I am going thrift storing (wjere you poke through the thrift stores looking for more junk to take home to add to your junk you have already) today. Lunch first at Wendys then off to the stores. My mother, sister and a friend are going, too. Should be fun. I slept in this monring and feel a little less tired than usual.
You are right when someone said I am tired of being tired, that summed it up perfectly.
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The correct spelling in the UK is Knackered not neckered. It originated from a place they used to send old working horses to when the were too old and no longer useful. It was call the 'Knackers Yard'. It also has a dual meaning as it is sometimes used as slang for testicles ie. 'Knackers'
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Since I've broke my hand I was having even more trouble sleeping with
the uncomfortable itching cast, my hand and arm being so constricted and all and I
finally asked for a sleeping aid. I cannot believe the difference. I wake up
actually feeling rested and relaxed instead of dragging myself out of bed more
tired then when I went to bed. It feels good to get some rest. Tho I am
not working with broken hand so that makes a difference too in the tiredness.
dreading when my pills run out... probably will get some tylenol pm or something.
I've also noticed that when I switched from the capd to ccpd that I'm not getting the
nighttime leg cramps like I used to so that helps also.
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Since I've broke my hand I was having even more trouble sleeping with
the uncomfortable itching cast, my hand and arm being so constricted and all and I
finally asked for a sleeping aid. I cannot believe the difference. I wake up
actually feeling rested and relaxed instead of dragging myself out of bed more
tired then when I went to bed. It feels good to get some rest. Tho I am
not working with broken hand so that makes a difference too in the tiredness.
dreading when my pills run out... probably will get some tylenol pm or something.
I've also noticed that when I switched from the capd to ccpd that I'm not getting the
nighttime leg cramps like I used to so that helps also.
O.B, may i ask what they gave you to help you sleep?? I NEED HELP!!! :-\
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I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible!
Mom 3
....That's because Davita does not want you to lose your insurance and go on Medicare. They LOVE HIPPER patients, they make more money from them. I don't think they care about you at all...work yourself so you drop in order for Davita to make more money.
EDITED: Fixed quote tag error - Bajanne, Moderator
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reno2360,
Welcome to IHD, please go back and read the Introduction thread containing the site rules, and then post an introduction in the introduce yourself section, so we can get to know you better.
Thank You
Sluff / Administrator
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I am always tired, and have a hard time falling/staying asleep too. I hate it. Just now my coworkers laughed at me,
told me to drink more caffeine! I have my daily allotment and once i have that, no more for me. Darn it. Nice thing
about weekends...you can take naps. I take tylenol pm. It's not working well, so I'm gonna ask my doctor for
something. I NEED it!!!!
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Right now I am tired all of the time. Once I get my phosphorus under control after this surgery coming up, I shouldn't be tired anymore. Low phosphorus causes Respitory Failure, so, it makes ya short of breath, tired, weak.. all of that.
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I am too tired to answer this sort of questions.... :lol;
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Me too...too tired...zzzzzzzz.
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I am tired of being tired.
And I shouldn't complain, given what kidney patients go through.
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My partner, Sandra, goes to bed at about 9.30pm (asleep by 9.36). I go to bed at about 2am, she wakes and says "good night hun" and it's back to sleep, she wakes up at about 4am, sits up looks at me, sitting there in a daze, lies back down and off to sleep in about 3 minutes. She's up at 6am, goes to toilet for a pee (the flood gates open!) back to bed and instant sleep. At 7.20am her alarm goes off, she wake, sits up looks at me and says "I had an awful night's sleep last night, I hardly slept a wink. :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead; :banghead;
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tired?? who me?? no way!!!! I'm exhausted...can't even keep my eyes open...hehehe but other than sleeping you will find me most of the time in the chat room i enjoy chatting with people it gives me the feeling of not being alone in this world, you see i have friends all over the world thanks to Bill's dream..Amanda from Oz. from Australia, Billoggblog from Scotland and i can go on and on, so who's tired? not me!!!! lol
come to chat and spend a minute or two chatting...you'll get to love it
peace people,
Rolando
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;D Bill, loved your rendition of Sandra's restless night... Keep sharing! (as long as she is not standing over your shoulder or hasn't a sense of humor) JK ::)
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I just can't get to sleep. Nor can I STAY asleep. I've tried several OTC meds, I'm gonna ask my doctor next Monday (clinic)
for a scrip. I hate this. I hate the fatigue, I hate the dopiness, I hate it all! And of course people say "Well, I have no problem
falling asleep." Well, no you don't. I do. Shut up about it already!. :banghead;
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I am tired of being tired.
Me too. zzzzzzzz :P
I go to bed tired, toss and turn, roll myself up in my PD cath, throw my legs around like a dying fish..... then wake up tired! :urcrazy;
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I go to bed and can sleep 8-10 hours, and wake up and feel like i haven't slept at all. Hopefully this surgery i just had changes that... cause being tired when you shouldn't be SUCKS majorally.
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I use to be tired a lot when I didn't do any sport, every since I started doing sport (kickboxing, Bmx, Soccer (football) and other things) I have been less tired. I sleep from 01:00am to 06:00am and I am full of energy.
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Sick, man sick. Slow down, take it easy! Hehehehe!
Enough teasing. I am proud you have an exercise routine. That is great! I need one.
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Sick, man sick. Slow down, take it easy! Hehehehe!
Enough teasing. I am proud you have an exercise routine. That is great! I need one.
Kit, I can see you take up kickboxing!
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I use to be tired a lot when I didn't do any sport, every since I started doing sport (kickboxing, Bmx, Soccer (football) and other things) I have been less tired. I sleep from 01:00am to 06:00am and I am full of energy.
That's great to hear!
We all need to take on some regular exercise routine ... walking or biking or swimming or weight resistance. It does help. But too many folks are afraid to try. :'(
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I use to be tired a lot when I didn't do any sport, every since I started doing sport (kickboxing, Bmx, Soccer (football) and other things) I have been less tired. I sleep from 01:00am to 06:00am and I am full of energy.
That's great to hear!
We all need to take on some regular exercise routine ... walking or biking or swimming or weight resistance. It does help. But too many folks are afraid to try. :'(
The last week I have been biking to work and back. The first couple of nights I was really tired and had a really deep sleep. I do feel more awake during the day when I do this. It might just be mental, but I do feel stronger.
I gained a lot more energy when I changed from using my permcath at a pump speed of 300 to my fistula at 450. The difference in clearance really makes a difference.
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I use to be tired a lot when I didn't do any sport, every since I started doing sport (kickboxing, Bmx, Soccer (football) and other things) I have been less tired. I sleep from 01:00am to 06:00am and I am full of energy.
That's great to hear!
We all need to take on some regular exercise routine ... walking or biking or swimming or weight resistance. It does help. But too many folks are afraid to try. :'(
The last week I have been biking to work and back. The first couple of nights I was really tired and had a really deep sleep. I do feel more awake during the day when I do this. It might just be mental, but I do feel stronger.
I gained a lot more energy when I changed from using my permcath at a pump speed of 300 to my fistula at 450. The difference in clearance really makes a difference.
A healty life starts in a persons head remember that. I'm happy to hear that u have more energy °
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Bumping the thread :bump;!
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I started on CPAP about a week ago, and am surprised to find I fall asleep quickly now (10-15 min. as opposed to 2-3 hours after going to bed), even though I have a mask over my face and a machine blowing air up my nose! The more I use the machine, the more I wonder how many of my energy-related symptoms were simply a matter of not getting sleep!
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I was reading this thread again and it made me think about how much sleep Jenna needed on dialysis, which was a lot. Her sleep patterns are still kinda all over the place, but she seems to be sleeping better since the transplant. This wasn't immediate though, and sometimes I worried because she seemed almost as tired after her transplant as before. But I guess some of it had to do with recovering from surgery and also the new kidney needing to grow bigger.
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I started hemo June 26 and seemed so energized at first. Now 6 mos later I am dog tired all the time. All my numbers are very good and clearance is too. On days I do dialysis I come out hungry and tired. All I want is to sleep
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I am dog-tired no matter what time I go to bed. 5:45 a.m. is a bear to get up at in the mornings. School starts at 7:30 a.m. My 6th graders are barely awake first period. Research shows adolescents do better in the late mornings on school work, so what do we do? We drag them to school at the butt crack of dawn! If anyone has a secret formula for getting rid of dialysis exhaustion let me know!
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Tired, sleepy, low in-energy and too damn tired to raise my voice.
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Kitz, I'm right there with ya. I have to get up at 4:45 some mornings in order to have my son on the school bus at 6:45. I wish someone would tell me WHY he gets on the bus an hour before school starts for a ride that's less than five miles!
As for the magic bullet, I wish I knew, I'd be rich! :banghead;
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Guess my kids are lucky. They get on the school bus at 7:45 and school starts at 8:00.
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:bump; :bump;
:urcrazy; It's driving me crazy.... I am so exhausted all the time!
I am sick of this rollercoaster... STOP the ride I want to get OFF!! :banghead; :banghead;
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:cuddle; :cuddle; Awww Wattle, I am sorry you're feeling bad. It must be tough, wanting to do stuff with you kids and being so tired.
Hang in there my friend. Rest when you can and try to use the energy you have for good times. Love you :-*
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Even after kidney transplant, I feel better in term of energy but still some days....
Probably bc my scar liver is the reason.
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I feel guilty about being tired all the time and everyone thinks because I go to dialysis I should be full of energy.
Now that I stay home, everyone thinks I should have plenty of energy.
It doesn't work that way. :rant;
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I am right there with ya Twirl and the rest of you!
And about the kids going to school at these ungodly hours! There's no sense in it. You're right, they are not awake until 10 or 11 am. Asking them to perform at 7:30 is abuse. I home school my kid and that's one of the reasons.
-Devon
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I feel for ya too! Just because I don't look sick and I'm not at the point of needing dialysis yet, people don't believe me when I say I'm tired all the time. It's annoying! My kidneys are only functioning at 20%, I still have some toxins building up. just because you can't see them, doesn't mean I feel spectaculor like you! I sleep about 12-14 hours a day! I hate it! :banghead; :banghead; :banghead;
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Even after my transplant, I still have days when I am fatigued. My new kidney just can't put out enough hormones to get my body to produce enough red blood cells, so I get a shot of Aranesp once a month to bring my hemoglobin up. Of course, the fact that I am getting over a virus doesn't help...then of course there's the pms...!
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When I have my labs done this Monday (tmr) I am going to be calling the doctor that day for the results because I am tired ALL the time. I do have a cold and the flu right now so that's making me more tired, but even well I still can sleep all day long. I don't know if it's because I cannot go anywhere andd am stuck in this house 24/7 or if it's my Anemia. I need to find out because at this rate, I don't see myself being able to work.
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Yes, I get tired easily. My nephrologist tells me that with my kidneys only fucntioning at 20% I should always remind myself I have about 20% of the energy of a normal person.
I keep telling myself that and try to limit myself accordingly, but sometimes it's so hard.
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I miss being able to shop the mall all the way through. Today I got halfway through it and the body just said quit. I sat down and read my book and waited for my friend to finish her shopping. I have only been halfway through our small mall every time I have been there the past year. "Sigh"
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I miss being able to shop the mall all the way through. Today I got halfway through it and the body just said quit. I sat down and read my book and waited for my friend to finish her shopping. I have only been halfway through our small mall every time I have been there the past year. "Sigh"
next time try starting at the other end. you'll eventually meet yourself in the middle.
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We went to a water park and I climbed so many freakin stairs! We went back again this morning and I was so wided. I only did one slide and stopped. Oh well, I had fun yesterday! But it wore my *** out!!!!! :sir ken;
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My family doesn't understand when I either sit on the couch or go lie down in the bed even when it is daylight. I tell them I am tired and the responsee is "from what?"!!!!! I count my blessings that I am still predialysis, but I only have 11-13% function. Sometimes I want to say, "No, I am not really tired, just really really lazy!" :banghead; Sometimes I wish they knew how I felt, but then I don't really want them to have to live with this like I do. Boy, do I sound pitiful.
I should not complain because last summer a kidney infection sidelined me before it was diagnosed. My creatinine was almost 7, and I walked around for several months either with a cane or on a walker. I actualy broke down to go check on disability, but then I learned that I would have to be out of work for at least six months. Like I can afford that. My creatine went back down to below 4, so I stop my complaining now. :thx; for letting me gripe for a moment!
NolaGail
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I steam cleaned part of my carpeting Saturday morning and I spent the afternoon on the couch to recover. I really, really want a bookcase because I haven't been able to unpack my books since I moved in last October, so I managed to drag myself out to buy one late in the day. I didn't leave the couch until late yesterday afternoon again. I think that morning with the steam cleaner wiped me out for the whole weekend. The bookcase is still in the garage, waiting for me to sand, stain, and assemble it. Maybe next weekend.
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We had a fun weekend with the kids and on Saturday I ran all over the water park with the kids. I like to play with them and act like I am :sluff;free from kidney disease. Then Sunday we went back, and
I walked up the 5 flights of stairs again and realized there was no way I could keep up a second day. When we got home, I did dialysis and went to bed. Again today, I took a nap during dialysis.
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My post posted before I was done - hard to type one handed while we have dialysis!!!.... Again today, I took a nap during dialysis. My husband does not seem to understand... he can't understand why I sometimes feel great and other so tired. I too feel lazy. Or I say I don't feel well like I am ill. But I am not ill, just tired!!! Sick and tired of being tired.
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Amen, girls. I drove to Indy to see my sister and my son, we went shopping, at Marshalls and at a bookstore, and I was pooped out, and had to drive back to my house. OH man. Sunday was nothing but a day of rest. I got up to clean out the potty box for the kittahs and made some mashed taters, and that was about it.
Most of my family understand it. I just hate having to miss things, because I can only do ONE event
a day, not two or more, as I used to.
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I'm not tired all the time but I do tire easily. I went thru a 6 week stretch where I was doing both dialysis and radiation treatments. The combination really wiped me out and I'm still struggling to recover my strength and stamina.
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Oh I hear you! My GFR went up and bit in December and I had a good few months, but for the past week I've been back in zombieland. This afternoon I looked after my five year old pal while her mom went to town. She's a great kid and we always have lots of fun, but after she left I just dropped in my tracks. My hat is off to all you parents. :bow; :bow; How does anyone manage to be a full time mom or dad with kidney disease?
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As for being a full time Mom with kidney disease: My daughter was nine and my son eleven when I first contracted kidney disease. Thank God they weren't any younger, but even that was hard work. I had to ask many friends and family to pitch-in to get me through it. I think my kids are better people because of it. They are very tolerant.
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today I feel horrible
I wanted and planned to do a list of chores, some of them I enjoy doing
but no,
I have been in bed almost all day asleep and feeling worthless
I made school lunches for tomorrow and packed a snack for dialysis
I made a roast, gravy, rice and cut fresh carrots to have with ranch dressing
one time my husband said, "I never let sickness get me down." and my son replied, "but dad you have two working kidneys"
I feel like I was mooned :sir ken;, hit in the head :Kit n Stik; and was :puke; on. I think I'll try eating a :bandance;
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In British English 'knacker' refers to what a butcher does to a cow before it appears in the grocery store. So when a person says he feels 'knackered,' he means that he feels as though he has been processed by a butcher -- i.e., he feels completely taken apart.
The causes for exhaustion are three-fold. First, neurological damage due to the accumulation of toxins the kidneys should remove can prevent patients from sleeping normally, so lack of sleep at night causes daytime tiredness.
Second, while normal kidneys remove just the right amount of fluid from the body at all times, dialysis does this only clumsily, and patients with insufficient fluid levels will feel exhausted.
Finally, almost all renal patients suffer severe anemia all the time, and this makes people more tired than anything else. The great tragedy of modern nephrology is that EPO cannot be given safely in the amounts required to bring patients up out of anemia (i.e., to a level of 140 for men and 120 for women), so the anemia of dialysis patients is incurable.
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I am not tired or lazy
I am Knackered :clap;
love the word and :waving;
spell check does not know the word :rofl; :rofl;
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As for being a parent, my kids were 5, 7 and 11 when I was diagnosed. My oldest daughter really matured that year. She is truly amazing. I love her so much. I would not have made it through without her watching the kids and helping out. I was diagnosed the very week we opened our own clinic, so my husband had to work round the clock to keep us above ground as I couldn't work anymore at the time. My oldest is still very mature and at 15 she is all that I could have ever wanted and more in a daughter. OK... can't type ... too many tears. Sorry, I went to a funeral today of a young friend that died of cancer and am really feeling mushy.
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I am tired after hemo and the day after hemo. Then the second day I feel ok and then its time for more hemo.
:Kit n Stik;
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I have been in stage 5 twice since my son was born. Just before his third birthday I was told to start getting potential donors ready; then again when he was 7-9. When he was younger, of course he had no idea what was going on - I was doing hemo very early in the morning, then going to work from there, so his routine didn't change much. Plus I was still married to his dad, my mother-in-law was living with us, and we had lots of friends in and out of the house who helped out when they could.
I started showing symptoms again in probably January 2006 this time around and wound up on dialysis in October of that year, and he and I were living on our own at the time. My parents were close by, and my now-husband came over every couple of days, so I had some help, but I still thank goodness I had such a small place to take care of. Even being as tired and worn out as I always was and getting sick daily, I was able to work full-time and keep the place pretty well picked up. The hardest times were when my son decided to throw a fit about bedtime and I just didn't have the energy to deal with that when all I wanted to do was crawl into bed.
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I know this is selfish, but oh well ..... I am sick and tired of being on the list and never getting THE call. I am sick and tired of having potential donaors not match. Oik there... :rant;
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Yes I feel tired all the time (sleepy tired that is), no matter how much I sleep and usually get between 6 to 8 hours a night and I usually sleep more at the weekends. It might sound daft but the only time I don't feel sleepy tired is when I'm doing my running training, although I would be lying if said it didn't make me phisically tired, but for me all the effort is worth it and keeps feeling alive, I've always loved running and will take more than organ failure to stop me doing it, even though I'm a good bit slower at the moment. Probably sounds like I'm a bit mad, but it stops me from feeling sorry for myself.
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The first few months after I started dialysis, I felt a lot better. I noticed I had more energy. I've been on dialysis for over 5 months now and I am back to being tired. :'( When I get home from dialysis I am soooooooo tired! For most of the next day I am still tired and then usually around 5 or so I get a little energy. The next day I am usually "Okay". Not full of energy but not bone tired either.
So - Sometimes I end up missing dialysis because I have abdominal problems. I try to make it up if I feel okay the next day. One time I ended up having dialysis 2 days in a row. The next day, I felt so good! I was able to do more in that one day than I have been able to do for ages. I thought it was just a fluke but now after reading more, I am thinking it was probably because I had the 2 days in a row of dailysis cleaning the toxins out of me. If that's the case, I may ask about home hemo even though the thought of the needles scares the beejeebers out of me! :o
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By no means am I turning cart wheels but my energy is much better on daily home hemo versus in-center 3x /week. After 3 years of being out of work, I recently started working part time from home. I don't feel like getting out of the house much but at least I'm not sleeping all day any more.
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Tired of tired of being tired! I have notice that on the check sheet the social worker gives me to fill out on my life on dialysis, I am no longer on the far right of the answers. That meant everything was hunky dory great. Now I fall in the middle of the grid with my answers. I talked long with the dietician today and she says she is going to find a doc that will hear my complaint and get my BP meds changed. I am now not taking them at all MWF so I walk around all day with a BP headache three days a week. Sucks rocks!
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I hear ya KK - sometimes I wonder if part of the feeling bad is just being a victim of the MD getting the right mix of meds to control effects of dialysis. I do agree with Russ too, I feel much better doing dialysis at home than only the three times a week in center. Hands down. And the fear of needles is easily overcome once you actually do it. I felt so empowered by learning all that you do in the classes and then doing it on my own. I haven't met anyone who has done (Nxstage) it say they wanted to go back. If so, maybe they will chime in here.
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Then let me be the first person you've heard of you did home hemodialysis and gave it up! I did not have a NxStage machine, since they were not available in Canada, but I did have an ordinary model, but I found having to perform my own treatment too burdensome and stressful for the advantages gained.
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Lately, I've been tired so often, that I sleep a good 11 hours a day, yet still feel tired. Well, all weekend I've been working every waking hour on a website I'm doing for a client. By 6:00 this evening, I still had not done 3 designs I needed to do for an ad for class, that's due tomorrow. I made the mistake of mentioning to my husband that I can't fall back to sleep after he leaves in the morning because I have to get my homework done. He then tells me that there are ways to stay awake and I should work on them so I don't sleep so much and get more work done! WTF?!! Excuse me? I got angry and told him that I should find ways to have normal functioning kidneys! He didn't appreciate that comment. But then again, I didn't appreciate his. :Kit n Stik; :banghead; :banghead;
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Lately, I've been tired so often, that I sleep a good 11 hours a day, yet still feel tired. Well, all weekend I've been working every waking hour on a website I'm doing for a client. By 6:00 this evening, I still had not done 3 designs I needed to do for an ad for class, that's due tomorrow. I made the mistake of mentioning to my husband that I can't fall back to sleep after he leaves in the morning because I have to get my homework done. He then tells me that there are ways to stay awake and I should work on them so I don't sleep so much and get more work done! WTF?!! Excuse me? I got angry and told him that I should find ways to have normal functioning kidneys! He didn't appreciate that comment. But then again, I didn't appreciate his. :Kit n Stik; :banghead; :banghead;
I think he needs a reality check! :Kit n Stik;
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Then let me be the first person you've heard of you did home hemodialysis and gave it up! I did not have a NxStage machine, since they were not available in Canada, but I did have an ordinary model, but I found having to perform my own treatment too burdensome and stressful for the advantages gained.
I couldn't do home hemo without my wife's help. She is a saint. :bow;
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so sorry Paddlebear
my husband said he never let sickness get him down------ what, the flu?
I am so tired of being tired, even sleeping does not help.
sometimes I am in bed not asleep and not awake either, like in between
I am going to have that parathyroid operation soon and am worried because when I'm gone by cat, Slugger, disappears.
So, I think I will board her at the vet's. She only weights about 9 lbs, she is about 14 years old. That's another argument.
I know how tired you feel and it sucks.
I would love to get up and feel full of energy........ain't going to happen today...
It is 4:30 am and I need to get ready for by MWF "beauty treatments".
I DO NOT WANT TO GO....sorry about the out cry...... :'(
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Ah stauffenberg I remember you saying you did not like it. However, I still think the majority would rule in this situation. Home hemo wins over clinic.
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It seems there is more and more evidence that daily dialysis makes people feel better.
I wonder how long it will take before it is routine. ???
Or maybe something better is coming - something that hasn't even been discovered yet.
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I hear ya KK - sometimes I wonder if part of the feeling bad is just being a victim of the MD getting the right mix of meds to control effects of dialysis. I do agree with Russ too, I feel much better doing dialysis at home than only the three times a week in center. Hands down. And the fear of needles is easily overcome once you actually do it. I felt so empowered by learning all that you do in the classes and then doing it on my own. I haven't met anyone who has done (Nxstage) it say they wanted to go back. If so, maybe they will chime in here.
Marvin has been doing home hemo for 14 months (NxStage) -- before that he was on in-center hemo (12 1/2 years). We both would fight tooth and nail to stay on home hemo as opposed to going back in-center. With all of the time, space, effort, and responsibility that is needed for home hemo, we have found that -- FOR US -- there is no comparison for the "better" health he has on home hemo (6 x week). Additionally, his "tiredness" greatly, greatly diminished once he started home hemo. He's a busy, active, on-the-go man, and sometimes I have trouble keeping up with him (and I'm the "healthy" one!!).
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When you're chronically ill, you may be having difficulty sleeping not from the illness, but from depression and obsessing over your illness. If you're like me, you lie awake in bed thinking about it and thinking about it and thinking about it.
At one point, my physician prescribed a medication called Seroquel (quetiapine). In small doses, that med is real magic: Cures depression. Cures obsessions. And oh yes, if you take it at bedtime, it works like a sleeping pill too. In a few months, you'll actually stop obsessing over the problems in your life.
It also treats post-traumatic stress disorder, restless legs syndrome, autism, alcoholism, schizophrenia, etc. Good for what ails ya.
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:thx; This thread really put things in perspective for me. My 14 year old (dialysis 14 months) has been having sleep problems for the past several years. I took her to a sleep study, a sleep doctor, nothing worked. The sleep doctor said, "do not let her sleep during dialysis"....poor baby, that was killing her. I would do whatever I could to keep her awake during dialysis and then she would just fall asleep in the car on the hour drive home. We would get home at 7:30pm and she would continue to sleep until 10pm and then up until 3am (UGH!). I changed her school schedule so she doesn't have to be there until 9am, which is much easier than the 7:15am we were shooting for previously. I know that the dialysis wipes her out 3 times per week so it is very difficult to have a "normal" schedule. I think that it would be perfect if Jaclyn could do dialysis from 7pm-11pm then she would be exhausted and sleep through the night. She can't do PD, because no one tosses and turns more than she does during the night. Does anyone know if your sleep schedule usually returns to normal after a kidney transplant??? :thx; Any input is greatly appreciated.
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My husband had a huge problem with insomnia for about 5-6 months after his transplant. He is now 9 months with the new kidney and sleeps just fine. I wonder if it is associated with the prendnisone. He has been tapering off and is now down to 7.5 mg/day. Insomnia seems to be a fairly common problem judging by the comments of others here at IHD (lots of night birds). I also have the impression that the transplant centers write a lot of scrips for Ambien.
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I am so tired --- I feel like it is my attitude --- my neph doc -- says it is my kidneys
I look forward to going to bed ---- unfortunately - to sleep
I know this is not for children to read but when my husband wants to do it --- the pay off is --- ok, tonight - but for the next two nights I get to sleep
I am a horrible wife -
kidney failure makes you a different person - it just happens -- slowly
no, I do not want to go to the zoo when we have spring break --- all the people and walking -- NO -- but he can go with the family---
please go..... I want him to ....
I may change my name to Tired Twirler -- then people know what they are getting
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I know """exactly"""how you feel....I think we all do unfortunately.
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I told my General Practitioner yesterday how tired I was all the time now that my kidney function is down to 15% function. She says,"Are you sure you're not just depressed?" Yeah, I'm depressed, I have kidney failure! That's depressing alright. But trying to explain to her that depression feels different from just plain exhaustion and tiredness is very difficult. It's not the same feeling at all. Twirl, I know what you mean about the husband. I let him know that if he expects "Action" then maybe he should make dinner so I have the energy.
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I am so tired --- I feel like it is my attitude --- my neph doc -- says it is my kidneys
I look forward to going to bed ---- unfortunately - to sleep
I know this is not for children to read but when my husband wants to do it --- the pay off is --- ok, tonight - but for the next two nights I get to sleep
I am a horrible wife -
kidney failure makes you a different person - it just happens -- slowly
no, I do not want to go to the zoo when we have spring break --- all the people and walking -- NO -- but he can go with the family---
please go..... I want him to ....
I may change my name to Tired Twirler -- then people know what they are getting
Baby i know how you feel. Even on nocturnal I have my "No i am not going anywhere" days. I let hubby do whatever he wants to do. Sometimes I go sometimes I just lay in bed. Stress at work is going to kill us all soon.
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Don't feel too bad ladies. My husband hasn't had the privilege in several months! :(
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I don't know if anyone but kidney patients understand the incredible fatigue. When I am making my bed, all I can think of is "when can I go back to bed?" I have helped my daughter with her move to her new house this week. Just helping set up the kitchen, kids rooms, etc but I am now so tired, I can't focus. I am taking the day "off" but with her wedding next week, there is still more to do. I could sleep around the clock and still be exhausted. I feel like I am walking in quick sand.
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Before I started dialysis, it was the exhaustion that got me. The worse my kidneys got, the worse it got. Now it's not so much exhaustion, but I'm just tired a lot. I sleep for hours after dialysis. The worst thing about it is that my sleep schedule is all messed up. I may sleep all day after dialysis, but I have trouble sleeping at night, so I end up sleeping for a while the next day too. And the vicious cycle repeats itself.
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i have to agree with you guys about everything. I am tired all the time at work, there are days i just want to put my head down on my desk and fall asleep. I go to my truck sometimes for lunch and take a nap. i know that not eating is not the right thing to do but, it just seems that sleeping is much more important. Everything takes so much more time to do. I feel like I am in slow motion most of the time... I uesd to be great even after 4-5 hour of sleep a night now I need atleast 8 or more it drives me crazy.
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Paris...I so agree...this is almost funny...I got myself a Fleece Sheet Set and now when I fix my bed, I fondle the sheets and generally crawl back in for just a few more minutes..today is my 2nd day of no sleep the night before and I feel wired...hmmm Ambien or Wine???? and bed....yes I know well the quicksand feeling....Paris..don't worry...what doesn't get done, just doesn't. Saul and I drove to NC from ND the week before graft surgery for dialysis for my youngest son's wedding..the only way the neph let me come was feet up on the dash all the way and lots of rest...he didn't need to tell me that part and I just sat all day the day of the wedding...Saul and my oldest son did all the decorations for the gazebo and everything and then took me to the reception and I sat some more...everything turned out fine anyway...the next morning we drove back to ND and had my graft surgery. I think my best memory of the day was Saul and Ron making net bows and hanging all the net...too cute.. 2 big guys with pick net and lace. :rofl;
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My 14 year old daughter has been on dialysis for 14 months and could not get out of bed without a "Red Bull" or other energy drink. Thank goodness she doesn't have a fluid restriction, because it takes her several of these to just get through the day. I know that dialysis causes her to be extremely lethargic, but it had gotten much worse over the winter months. I had been extremely lethargic in winter months due to vitamin D deficiency so after much begging, I finally convinced her neph to run vitamin deficiency blood tests and found that she was extremely deficient in Vitamin D. She is now taking 4000 I.U. of Vitamin D and I am hoping that it helps with the extreme fatigue. There are energy shots now that give an extreme boost with only 1oz fluid. Has anyone here tried those? Any info on adverse effects of energy drinks for dialysis patients?
Thanks in advance for your input and thanks for your support. :grouphug;
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Did you know that Red Bull is not safe for kidney patients on dialysis? The taurine does not get sufficiently dialyized out of the body and it builds up to toxic levels over time. Here is a study that was done - http://ndt.oxfordjournals.org/cgi/content/full/17/3/528.
It can also interact with prescription medications and causes high blood pressure. You should definitely read the section on cardiovascular effects here - http://www.u2.com/stream/article/display/id/4610 - and talk with her doctor about this!
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OMG! Thank you Paddbear! My teenager won't like it, but no more energy drinks for her!! I don't understand why the nephrologists provide misinformation! They specifically told me that the energy drinks were safe in moderation, 1-2/day, but she would have to refrain from all energy drinks after kidney tranplant. Hopefully, the Vitamin D begins to kick in. Has anyone heard if vitamin D builds up in your body due to CKF and creates any type of toxic condition? :stressed; I m going crazy trying to help my baby girl.....don't know how I will get her out of bed for school tomorrow. ???
Thank you again, Paddbear.....The info and support I have found here is invaluable. :cuddle;
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No problem! That's what we are here for! As far as the vitamin D, I doubt it builds up as a lot of kidney patients take it because the kidneys can no longer synthesize it. I'm sure they will do regular labs to check her vit. D levels until they become normalized. They may need to play around with her dose until they find a perfect "fit." Is she taking a pill or getting it through her lines at dialysis? Also, how are her hemoglobin and hematocrit levels? Has she had her iron and ferratin levels checked too? Is she getting enough epo? These can all play a part in how she feels. Have you guys investigated doing home hemo? By doing it at home, she can do it more days a week (for shorter sessions) which more closely mimics working kidney's function. Everyone swears that they feel so much better and have more energy than when doing in-center hemo. She should also try getting some exercise. That helps as well.
Like I said, I sleep a lot since starting dialysis almost a month ago (except at night, which is erratic). I just had my labs drawn for the first time today (except for the ones on the first day), so I will find out Saturday if any of the things I mentioned above are off. I'm considering doing home hemo and joining a gym as well.
:cuddle;
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HI it is good to read that I am not the only one that is tired. I don't have a problem sleeping I have a problem with waking up. for example the other day I was on day off from work ( which by the way I do 84 hours a fortnight) I went to "Hook up" having slept from 10 pm through to six am , crawled into the chair covered myself with my blanket and promptly went back to sleep and stayed that way for the whole four hours. I then rallied a bit and went home, by the time I got home I was exhausted and fell onto the bed and slept through till 09 am the next day from 3 pm in the afternoon. I could sleep all day every day... Just one other thing is it a common practice for our joints to hurt. My hips are real bad ????
Keep smiling Purple
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As I just started dialysis, I haven't experienced anything joint related. The only joint pain I have had is in my fingers, and I've had that for years. Arthritis runs in my family. You sound like how I've felt the last 2 days. Especially today. I slept for 8 hours last night, got up at 7 this morning, struggled to keep my eyes open until 7:40 when my husband left for work, then promptly passed out cold again until 10. I let the dogs out for a few minutes, let them in, sat down on the couch to read the paper, and the next thing I knew, it was 12:30pm! And I'm shaking horribly today. I have no idea what that is about either. I've got to stay awake because I have to go get a chest xray for my transplant hospital today!!
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I'm sorry about the shaking you are experiencing and I dream about sleeping more than 2 to 3 hours.........or is that a nightmare???