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Author Topic: Do You Sleep More Now?  (Read 3233 times)
Marilee
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Hubby's a PD Person - I'm 'support'

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« on: May 05, 2018, 12:28:19 PM »

When my hubby's kidneys started to decline, we found that he slept more and more through the day, and that was one big clue that it was time to start dialysis. But even now, after doing PD for a year, there are days where he sleeps most of the day. I'm not talking naps - I mean deep sleep.

Is that fairly typical?
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Aaisha.Dar
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« Reply #1 on: May 05, 2018, 12:52:32 PM »

Pd and hemo, from my personal experience really drain you out. I did pd at night and sometimes work up tired. But hemo it seems like a diff story. I will come back around 11 am ( 3 hours 30 min) and eat a good breakfast then knock out until 7 PM. Yes I know I am not happy about these habits but it's nearly impossible to stay up. Then I'll wake up eat dinner and then go to sleep again around 12 or 1 am. This started happening about a few months ago where I am unable to stay up and I just knock out. But what's weird is I am unable to sleep at dialysis now. It really sucks. I'm there at 6 am wide awake. If someone had tips on how to make me fall asleep at dialysis I would really appreciate it. Looking at screens or moving my eyes during dialysis make my head hurt a lot.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #2 on: May 05, 2018, 01:05:21 PM »

Well yesterday I got back from dialysis at about 7:30pm, fell asleep in the chair almost instantly. Woke at 8am this morning, and just sat there listening to talk radio for a couple of hours. Eventually got the energy to do a bit of work on the computer, some tidying up, then about 1:30pm had to take another hour's sleep, probably would have been longer if I had not been woken by a 'phone call.

That was a bad day, normally I need about ten hours sleep. But sometime more than the 12.5 hours (plus one hour nap) I got last night.

As to it being deep sleep, sometimes it is, sometimes not.
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Paul
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« Reply #3 on: May 05, 2018, 01:06:09 PM »

Should have pointed out in my last post that this was HD.
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PrimeTimer
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« Reply #4 on: May 05, 2018, 03:07:20 PM »

My husband use to never take naps until he started hemodialysis. But now here it is, nearly 5 years into it and he's about to turn 60 and he doesn't nap very often. And now that his Hemoglobin is back up to 11.4 he seems to have an endless supply of energy. Having low Hemoglobin (anemia) obviously requires one to nap. But now if he naps it not every day and for only about an hour. Sometimes he sneaks a brief one while I am cooking dinner but that's after he's been working all day.   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
iolaire
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« Reply #5 on: May 05, 2018, 03:45:33 PM »

But hemo it seems like a diff story. I will come back around 11 am ( 3 hours 30 min) and eat a good breakfast then knock out until 7 PM. Yes I know I am not happy about these habits but it's nearly impossible to stay up. Then I'll wake up eat dinner and then go to sleep again around 12 or 1 am.

Have you considered an afternoon treatment?  I was washed out after my 3-6:30 treatments when I arrived home at about 7:30. But that allowed me to go to sleep after dinner and have a fairly normal night of sleep.

I completely understand how an early am treatment could ruin the day.  Usually when I did those it was on trips and I kept going slowly because there was fun stuff to do. The days I did it and went to work I was not very productive.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Marilee
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« Reply #6 on: May 05, 2018, 05:57:10 PM »

This is very interesting! PrimeTimer, you've brought up a point that makes me think... they've been gradually upping the shot dosage for the erythrpoeitin (sp) to improve hubby's anemia (right now, it's once a month at 60 mcg - I think). It could be that he needs to do every other week or even more. We did blood work yesterday and clinic is next week, so this will definitely be a topic for then.

I always suspected that HD would take it out of a person (literally and figuratively), but I had no idea it costs so much 'down time' after the treatments. Ugh.

Thanks everyone for the feedback and help!
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
PrimeTimer
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« Reply #7 on: May 05, 2018, 06:27:34 PM »

This is very interesting! PrimeTimer, you've brought up a point that makes me think... they've been gradually upping the shot dosage for the erythrpoeitin (sp) to improve hubby's anemia (right now, it's once a month at 60 mcg - I think). It could be that he needs to do every other week or even more. We did blood work yesterday and clinic is next week, so this will definitely be a topic for then.

I always suspected that HD would take it out of a person (literally and figuratively), but I had no idea it costs so much 'down time' after the treatments. Ugh.

Thanks everyone for the feedback and help!

Due to blood lost after they pull his dialysis needles and brief fistula bleeds and then illness, he became very anemic. They upped his Epogen injections to 3x a week at treatment until he finally got over 11. Now they will give him Epo once a week. Everybody is different but his Neph (and another) both agreed that he needs to be over 11. Now he finally feels good again. Another to consider is that maybe it depends on what type or brand of Epo is used. Hubby didn't respond well to the Micera (sp) that Fresenius had switched to so his Neph wrote orders for them to use Epogen. Good luck. Hope for the best. 
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
GA_DAWG
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« Reply #8 on: May 05, 2018, 07:01:48 PM »

Marilee, I have said oon ere before that I was told by a doctor that the effect on the body of a dialysis treatment is roughly the same as running a marathon, though because the patient is sitting still, it does not register.Think how much you would have to exercise to lose two pounds of fluid or more. I get home around 4 pm from a four hour run, eat, and take maybe a three hour nap. After that, I am up until 2 or 3 am. Get eight hours of sleep with maybe a short nap the next day which is usually pretty busy. Then I am up until 2-3 am again, which lets me sleep an hour or two at the next session. Aaisha, normally I listen to music until I wake up, then skim the Washington Post and play games until time to go, but still listen to music doing so.
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Aaisha.Dar
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« Reply #9 on: May 05, 2018, 08:15:56 PM »

Thanks for the suggestion, also good explanation on how dialysis is like marathon.
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Marilee
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« Reply #10 on: May 06, 2018, 10:57:51 AM »

Does anyone practice meditation during Hemo-Dialysis (or is it too bright/clinical a setting for that)? I was thinking about Aisha, and just about every time I try to do meditation, I fall asleep instead :D
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Aaisha.Dar
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« Reply #11 on: May 06, 2018, 03:17:17 PM »

Light is way to bright and I'm extremely cold. My seat for moved I'm under a vent and also they want to keep me cold so my bp gets higher. I'm gonna wear extra layers
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cassandra
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« Reply #12 on: May 06, 2018, 10:26:41 PM »


Does anyone practice meditation during Hemo-Dialysis (or is it too bright/clinical a setting for that)? I was thinking about Aisha, and just about every time I try to do meditation, I fall asleep instead :D

After a session I do sit up straight (on a good day), make some smily faces, inhale and blow out deeply for a few minutes, while imagening I am blowing a peace pipe. Apparently it reduces cortisol and BP  :angel;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Marilee
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« Reply #13 on: May 07, 2018, 06:42:34 AM »

So I charted my hubby's bloodwork... his hemoglobin hovered around 11 for about 7 months of dialysis and then it dropped rather abruptly in December into the 9.5 area and hasn't been above that since, despite the shots. Of course, the shots are given right after the bloodwork, so I don't know what it's like right after the shots, but it's apparent that this needs more attention.
I looked up guidelines online about target numbers for dialysis patients and found that 'mortality increases below 9', and they recommend targeting between 11 - 12 (even though that's still below normal).
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Marilee
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« Reply #14 on: May 07, 2018, 06:44:46 AM »

Cassandra - my hubby's PTSD training at the VA has him do similar breathing when he finds himself in a stressful moment. It does help with BP for sure. I'm so glad it helps you too  :thumbup;
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
PrimeTimer
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« Reply #15 on: May 07, 2018, 02:42:40 PM »

So I charted my hubby's bloodwork... his hemoglobin hovered around 11 for about 7 months of dialysis and then it dropped rather abruptly in December into the 9.5 area and hasn't been above that since, despite the shots. Of course, the shots are given right after the bloodwork, so I don't know what it's like right after the shots, but it's apparent that this needs more attention.
I looked up guidelines online about target numbers for dialysis patients and found that 'mortality increases below 9', and they recommend targeting between 11 - 12 (even though that's still below normal).

My husband says he can "feel it" when he's below 10 and really feels lousy below a 9. I don't remember why they want him above 11 but they do. When a Neph first said that he wanted him above 11, the nurse interrupted, saying it was not Fresenius' policy to have a patient over 11 but the Neph was quick to say "This man needs to be above 11". And so from there on out they try to keep him above 11. Maybe your husband will be in the same category. Or at least above a 9. Hopefully they can back-track and pinpoint when or how his Hemoglobin dropped (illness, surgery, infection, blood loss?)
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Aaisha.Dar
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« Reply #16 on: May 07, 2018, 09:27:56 PM »

I remember for so long my hemoglobin stayed low at 8 or 9 that eventually I just got used to feeling lousy. Finally I was put on epogen and it was such a difference on how I started feeling. I also got color to my face and had an appetite.
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PrimeTimer
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« Reply #17 on: May 07, 2018, 09:55:37 PM »

I remember for so long my hemoglobin stayed low at 8 or 9 that eventually I just got used to feeling lousy. Finally I was put on epogen and it was such a difference on how I started feeling. I also got color to my face and had an appetite.

Glad you are feeling better. When my husband's Hemoglobin got down to 7 he had no appetite. Once they increased his Epo and got his color and energy back his appetite returned. He had lost so much weight that now he's hungrier and wants to eat, eat, eat. lol So I am glad when he is hungry but worry if he isn't.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Whamo
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« Reply #18 on: May 08, 2018, 07:42:44 AM »

If you exercise sleep seems to come easier.  I hope this helps you. :thumbup;
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Marilee
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« Reply #19 on: May 08, 2018, 11:34:36 AM »

OK, we just got back from clinic - hubby's asleep. Today they doubled his EPO dose and taught him how to administer the shot himself to do at home. I know he felt better last month for about 10 days after the shot, so I hope that this bump will get the job done for him.

Meanwhile (and off-topic), his phosphorus numbers continue to be excellent, but now his potassium is a little too LOW. Yup, limiting many of the high phos foods (like dairy, potatoes, corn and beans) went a little too far, potassium-wise, so my next diet adjustment will be to sort this out. At first blush, I'm thinking that this time of year we'll enjoy more strawberries, cantaloupe and watermelon (instead of apples and grapes) and perhaps boost portions or frequency of beans, tomatoes, & corn on the cob.

Always more to learn.

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As my hubby would say, "Don't let what you can't do get in the way of what you can."
kickingandscreaming
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« Reply #20 on: May 08, 2018, 12:11:32 PM »

PD washes out a lot of potassium, so, unlike HD, if you do PD you need to eat potassium foods.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
GA_DAWG
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« Reply #21 on: May 08, 2018, 01:33:36 PM »

Keep in mind moderation. A slice or two of tomato is one thing, a whole tomato is another story. While I love cantelope, the difference between it and watermelon is enough to keep me eating watermelon instead. I try to keep potassium and phosporus low, but not too low, eating more of the mid-level fruits and vegetables. When I first started, I had a nurse who gave me lists that had numerical values for fruits ad vegetables in phosphorus and potassium. They were much more helpful that just this is high and this is low. I had numbers I could compare.
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Paul
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« Reply #22 on: May 08, 2018, 01:51:39 PM »

Keep in mind moderation. A slice or two of tomato is one thing, a whole tomato is another story.

When the dietitian told me I was too good at sticking to the diet, my potassium and phosphorus were getting dangerously low, so I should loosen up and eat more "bad" foods, one of the first things I bought was a bag of tomatoes, and ate a whole tomato at once. It was delicious.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Marilee
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« Reply #23 on: May 08, 2018, 02:24:22 PM »

Luckily, many good sources of potassium are in the fruits, veggies and beans world (I spent the afternoon staring at numbers in the USDA database), so I think I can boost potassium without severely impacting phosphorus.
Kickingandscreaming: You're right: The nurse today said that phosphorus is a bigger molecule, so PD doesn't do as good a job filtering it, while potassium it has no problem. That's a big difference, diet-wise between PD and HD.
Paul: Sometimes abstinence makes the heart grow fonder, eh?
GA_Dawg: You're so right about moderation and using numbers. I have to do things by the numbers or I lose confidence. I came up with my fruits, veggies and beans list by comparing potassium mg to phosphorus mg - Many beans are like a 10-to-1 more potassium to phosphorus, so boosting bean portions is actually a good idea for us. Yea, we can have 1/2 a cup instead of 1/3 cup (moderation).
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
PrimeTimer
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« Reply #24 on: May 09, 2018, 09:08:29 AM »

OK, we just got back from clinic - hubby's asleep. Today they doubled his EPO dose and taught him how to administer the shot himself to do at home. I know he felt better last month for about 10 days after the shot, so I hope that this bump will get the job done for him.

Meanwhile (and off-topic), his phosphorus numbers continue to be excellent, but now his potassium is a little too LOW. Yup, limiting many of the high phos foods (like dairy, potatoes, corn and beans) went a little too far, potassium-wise, so my next diet adjustment will be to sort this out. At first blush, I'm thinking that this time of year we'll enjoy more strawberries, cantaloupe and watermelon (instead of apples and grapes) and perhaps boost portions or frequency of beans, tomatoes, & corn on the cob.

Always more to learn.

Altho your husband's fluid intake isn't too restricted on PD keep in mind that anything that melts to liquid at room temp counts towards fluid intake. Also, be careful with watermelon or any of the "melons" because of their water content.

Glad they are upping his Epo. That ought to help his energy level. Just as an fyi, Epo always plays with my husband's blood pressure for a day or two after he's had an injection. Nothing major, just thought I should pass this on.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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