I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Marilee 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?
-
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.
-
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.
-
Should have pointed out in my last post that this was HD.
-
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.
-
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.
-
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!
-
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.
-
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.
-
Thanks for the suggestion, also good explanation on how dialysis is like marathon.
-
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
-
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
-
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;
-
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).
-
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;
-
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?)
-
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.
-
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.
-
If you exercise sleep seems to come easier. I hope this helps you. :thumbup;
-
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.
-
PD washes out a lot of potassium, so, unlike HD, if you do PD you need to eat potassium foods.
-
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.
-
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.
-
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).
-
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.
-
I don't remember why they want him above 11 but they do.
Increased risk of adverse thrombolytic events when you use ESAs like EPO to boost HGB.
-
I, too feel better at 10 or 11 but it is really dangerous for me to push for 10.5 or higher. I did not believe this when told but after a stroke at 10.5 and another at 10.8 I decided that the doctors might be correct about limits. My solution was to stop bending the doctors' ears with my insistence for higher values. That decision was over 2 years ago and it has worked out well. I was lucky that the strokes have so far been only warnings from my Higher Power. After some lengthy physical therapy in a really nice facility my vision and physicality are in pretty good shape. I can even drive again. :thumbup;
-
Well, that certainly explains the cautious way the Dr. has been administering EPOs - a little bit, a little more, now 2x a month. Hubby's BP goes high at the slightest provocation. It's a tight-rope walk then, between too little red blood and a stroke. Yikes.
I've learned a lot in this thread, thanks so much for the info and advice!
-
My husband has somewhat of a physical job and is fairly active. He's not overweight, limits his fluid intake, doesn't drink or smoke. Labs look good. He's also on aspirin therapy along with a BP med. Maybe this is why they take more of a risk with keeping his Hemoglobin at 11+. Once he gets over 11 they back off the EPO to just once a week. Even his Hematologist agreed with this regime.
-
PrimeTimer, I'm so glad that your hubby can take the EPO and have it well tolerated (yea!). So he take a shot once a week? We're up to twice a month, but I can imagine better results at lower doses 4x a month: Less of a rollercoaster.
Lulu836, I read recently that several big Pharma companies have developed a pill to replace the EPOs - allegedly without the same risks. I read that Switzerland already has it, that it's in the hands of the US FDA for approval. I also read that it's planned to launch in the US when the patents all expire on the EPOs. I think it was called a HIB stabilizer. It's possible this new pill will help you, eh?
-
HD knocks me out. Within two hours after I get home from dialysis, I am in the bed. Sometimes less than that. Going to bed that early messes up my sleep pattern. I am in and out of the bed every 45 minutes on so. I wake up the next morning totally wasted. It takes until about 5-6pm for my body to recover. Then it is back to dialysis the next day and the pattern repeats itself.
-
Hi coldhoist what's your pumpspeed at? And your UF rate?
Love, Cas
-
Lulu836, I read recently that several big Pharma companies have developed a pill to replace the EPOs - allegedly without the same risks. I read that Switzerland already has it, that it's in the hands of the US FDA for approval. I also read that it's planned to launch in the US when the patents all expire on the EPOs. I think it was called a HIB stabilizer. It's possible this new pill will help you, eh?
My clinic stopped EPO several months ago and went to another one (don't remember the name) which they say gives better results. To my chagrin I don't question the nurses very often about what they are putting in my line. I trust them but that's not a good reason not to question them.
-
HD knocks me out. Within two hours after I get home from dialysis, I am in the bed. Sometimes less than that. Going to bed that early messes up my sleep pattern. I am in and out of the bed every 45 minutes on so. I wake up the next morning totally wasted. It takes until about 5-6pm for my body to recover. Then it is back to dialysis the next day and the pattern repeats itself.
Hello coldhoist,
Wouldn't it be a good idea for you to have your dialysis-sessions during the late evening shift and when you finish dialysis and arrive at home you slowly get ready for bed? Perhaps that could help you to achieve a less disturbed sleep-pattern?
Best wishes and good luck from Kristina. :grouphug;
-
Hubby's BP goes high at the slightest provocation. It's a tight-rope walk then, between too little red blood and a stroke. Yikes.
@Marilee.........after getting my dry weight situated I was still having episodes of extremely high BP. The sodium part of the HD treatment was removed totally and the BP has been reasonable and appropriate every time since. Sodium is used to combat cramping and since I have a low dry weight and never exceed 1.5L of fluid on board I am not likely to cramp anyhow. Lust a thought............
-
The sodium part of the HD treatment was removed totally and the BP has been reasonable and appropriate every time since. Sodium is used to combat cramping and since I have a low dry weight and never exceed 1.5L of fluid on board I am not likely to cramp anyhow. Lust a thought............
Wow! I never knew that sodium was added to HD treatments. I'll have to check to see if there's any in the PD dialysate. Hubby's blood pressure has been high with wild swings for years (that's what damaged the kidneys): He's on 5 different daily meds to keep it under control, but it still swings now that he's on dialysis (or now that his kidneys have failed... not sure which).
Thanks for the tip about sodium in the treatment - I'll check it out.
-
I never kn ew about high BP causing kidney failure, and never knew I had high BP to begin with. When I finally went to the doctor, she asked me who was treating my high blood pressure. Told her no one, I did not have high blood pressure. She told me it was 230/160 and asked what I called that. She gave me medication and sent me for blood work, which I refused for another week. By the time I had the blood work done, the lab called the doctor, did not even wait to send the results. Doctor called my wife and told her to get me to the emergency room as quickly as possible and read her the numbers to give the ER. ER was full, but they sent me straight to the back, did not even complete registration. Later that night, I got the news about ESRD. I think most people have no idea about the danger of high blood pressure.
-
I think most people have no idea about the danger of high blood pressure.
Silent but deadly!
-
I think most people have no idea about the danger of high blood pressure.
Wow, that's a horror story, GA_DAWG, and I think you're right: Folks hear the vague "silent killer" phrase and think about heart attack and stroke, but kidney failure? Not at all.
My hubby didn't go to doctors - ever - until he had a heart attack from a blockage, got a stent implanted and started taking statins. Then they looked at his bp: 220/120 (a lot like yours!) but no damage to kidneys at that point (20 years ago). They started messing around with drugs to lower the bp but it took about 10 years to get a combo that worked well enough and in those years his poor kidneys just scarred over. They stabilized at about 20% functionality for several years but then hubby got dehydrated and the kidneys took another, final hit. We didn't know that as people get older they lose their sense of thirst so neither of us was watching out for dehydration - it's not like he was crossing the Sahara or anything, just wasn't thirsty, just didn't notice.
-
Now, I have a lot of trouble sleeping. I cannot get comfortable in bed. I toss and turn. I am in and out of the bed all night long. It is very frustrating to want to sleep but you cannot. On dialysis days, I get home and I am in the bed early, like about an hour after I get home. I am up at eleven o'clock and then thought out the night, I wake every 20 minutes and start pacing the floor.
I have never had a problem like this until I started dialysis.
-
I would guess the waking is psychological rather than physical (worrying about dialysis), and will go away when you get used to dialysis, unless you get into the habit of believing it is part of dialysis, then you will be stuck with it. In other words, convince yourself that this problem will go away, and it will (but also speak to a doctor incase I am, wrong about it being psychological).
-
My slleping habits changed. After coming home from a treatment in the mid to later afternoon, I have something to eat, then take a pretty long nap. That makes it impossible, on most days, to go to bed and sleep early. Now I normally am up until I start to feel sleepy rather than going to bed and just laying there, which always seems to just make things worse.