Post-Dialysis Fatigue Question (from the perspective of a student)

[OTstudent]

Hi Everyone!!

First off, thank you for accepting my request to be apart of this discussion board. I am a graduate occupational therapy student at a university in the Midwest. As part of a program development class, my group and I decided to look into support, programs, and what else is out there for individuals that undergo dialysis treatment (we found a lack of support groups in our surrounding area). We know that dialysis can be extremely exhausting and has the potential to really prevent participation in every day life. We are in hopes to develop a program that can make things a little easier or help out with any problems that you guys feel might need some consideration. I have a couple questions, if you can kindly answer them to help us out:


1. What is a typical day like after dialysis treatment? What is a day like the day after dialysis?
2. Do you experience any difficulties in daily tasks? Specifically, cooking and preparing meals?
3. What tasks are the hardest to complete after treatment?
4. What do you typically do (strategies) to conserve your energy?
5. What are your biggest concerns with undergoing dialysis treatment?


We would really really appreciate your time and efforts to help us learn more about you all.
Thank you very much.


-OTstudent

[cdwbrooklyn]

PLEASE KEEP IN MIND THAT EVERY CASE IS DIFFERENT.  WHAT WORKS FOR ONE PATIENT MAY NOT WORK FOR THE NEXT PATIENT. 

1. What is a typical day like after dialysis treatment? What is a day like the day after dialysis?
Well, I do my treatments at home on NxStage Pure Flow System.  I work from 9am to 6pm and get home anywhere from 7:30pm to 8:00pm.  I take my time and do things around my house and anywhere from 9:00pm to 9:30pm I start up the machine.  Anywhere from 10:30pm to 11:30pm I’m hooking myself to the machine.  I dialysis for two hours and forty-five minutes to three hours and when I’m done, I unhook myself from the machine anywhere from 1:30am to 3:00am and clean up my area then I go to bed for two to three hours and get up for work at 5:30am.  Yes it’s hard but determination beats it all. 

Well, the next day, I feel very normal.  No problems whatsoever.  I feel really great that it does not feel like I’m on dialysis.
Moving forward, I fight with myself to get up at 5:30am in the morning; I’ll jump in the shower than get myself ready to go to work.  Depending on how tired I am, I will sleep on the train as I am going to work however not all the time but sometimes. 

2. Do you experience any difficulties in daily tasks? Specifically, cooking and preparing meals?
Absolutely not, cooking is not a problem or preparing meals.  It’s what I like to do however because I’m working most of the day and have little time at home before hooking up to the machine, cooking and preparing meals are not my priority.  Nevertheless, I do cook some days when I feel like eating a good home cooked meal.  Most of the time, I’m eating salads and outside foods.   

3. What tasks are the hardest to complete after treatment?
Well, cleaning up the house is one of my hardest tasks when I decide to dialysis early in the morning.  It’s like my body wants to rest for a while before I am able to do anything because I usually dialysis at night and go directly to sleep afterwards.  As of other tasks, no at all, I can do anything a person not on dialysis can do probably better. 

4. What do you typically do (strategies) to conserve your energy?
Well, I take women’s day vitamins and iron pills.  I am always active by going places and doing things.  I do not sit home and do nothing on my days off from work unless I’m extremely tired, which I do have those days once in a while.

5. What are your biggest concerns with undergoing dialysis treatment?
I don’t really have any concerns because I know that I am under God’s umbrella.  While I am grateful that dialysis is keeping me very healthy, there are some days I wish I did not have to hook up to the machine.  However, I am happy that I am alive and enjoying life one day at a time. 

[MooseMom]

OTstudent, I'm not in a position to be able to answer your questions (but I hope that LOTS of people respond), but may I ask how you found this site?

Thank you!

[Sugarlump]

Hi I am a long term dialysis patient in the UK
1) I have dialysis Monday Wednesday Friday mornings. We leave the house at 7am and get home about 1.30pm.
    I usually fall asleep when I get home and take my post dialysis 2 hour nap.
    I never feel very lively and not up to cooking or preparing a meal. (My Partner/carer will do that)
    Tuesdays, Thursdays and Saturdays are great. I have so much more energy and my jeans fit better!
    Sundays I start to flag a bit, like a clockwork toy running down...
2) Difficulties in daily tasks? I personally need quite a lot of help.
    I can only manage very light housework and my partner/carer does all the heavy stuff and a lot of the cooking.
    I can no longer walk my dog on a regular basis.
    I no longer drive as can't concentrate.
    I have my groceries delivered because shopping drains my energy.
3)The hardest thing after treatment is to stay awake!
    I hate having to go straight out somewhere directly from dialysis.
4)My strategy for conserving energy?
  My other half taught me the spoon theory.(if you have 12 spoons in your drawer that equals your energy/ you use each spoon wisely)
  I prioritize what I have to do, factor in things I would like to do and admit defeat when I can't!
  I have learnt if you do too much in one day (you are borrowing spoons from tomorrow) and can't manage.
5)My biggest concerns?
  Needling (if it will be successful or not?)
  Stopping bleeding (which can be a nuisance when it wont stop)
  I am aware of how much time i am "wasting" on dialysis/travelling to and fro/hospital appointments.
   

[Hemodoc]

If this is for educational purposes, I would hope that as students you will ask a more important question, what causes post-dialysis fatigue? The answer to this question in many ways would obviate the need for the rest of the survey.

http://www.researchgate.net/profile/Adrian_Covic/publication/257206735_Dialysis-induced_segmental_wall_motion_abnormalities_post-dialysis_fatigue_and_cardiovascular_mortality_the_new_Bermuda_triangle/file/e0b4952cbdd62cab3a.pdf

[estonb]

I am only one of thousands (millions?) of dialysis patients and I know that every dialysis patient's experiences after dialysis are unique to their own physical condition as well as their dialysis modality. So don't consider my answers to your questions to be the same as any other dialysis patient. Here are my own specific answers to your questions:

FYI: I dialyze in-center, 3 x week, 4 hours each session. My schedule is M,W, F from 3p - 7p).

1. What is a typical day like after dialysis treatment? What is a day like the day after dialysis?

I dialyze on the last shift of the day, so I don't have much "free" time before I go to bed on the day that I dialyze. After my dialysis tx for the day, the rest of the day (or evening, in my case) really depends on how close I get to my "dry weight" (I put that in quotes because who REALLY knows what a person't true dry weight it is?). If I am a bit over my dry weight, I feel perfectly fine. I don't get that rush of feeling really good like I have heard others mention, but I don't feel bad either. I feel just the way I like to feel. If I get very close to my dry weight (within a kl or two, either above or below), I feel a little bit light headed but nothing to write home to mommy about. If I get significantly under my dry weight (more than a few kl under), I feel very tired - my muscles feel like my entire body just had a really hard workout. I also fell dizzy if I stand up too fast and sometimes have to lean on something before the dizzy spell passes in fear of falling over or tripping over something.

The day AFTER dialysis is pretty much the same - it depends on how close I got to my dry weight the previous evening when I left dialysis. Just above my dry weight and I feel pretty much like myself except I can feel the bit of extra fluid I am carrying around. Pretty close to my dry weight - I feel fine except for a few light headed moments throughout the day. Somewhat below my dry weight and normally, that feeling of being really tired that I had the night before has gone, but I tend to get several dizzy spells throughout the day when I stand up or start walking. When I get these spells, I just have to stop moving and lean on something for a minute or so until the spell passes. On rare occasions where I really pushed  myself to get below my dw the night before, my muscles still feel really tired for most of the day. Not tired enough to not do anything, but just irritatingly tired. I just have to push through it unless I want to lay in bed all day - which I don't.

2. Do you experience any difficulties in daily tasks? Specifically, cooking and preparing meals?

No, I don't experience and difficulty in daily tasks. The only time it gets close to being difficult is when I have pushed  myself the night before to get below my dw. I am still able to perform my daily tasks, but my muscles sometimes just feel really tired, and I often have to pause and lean on something to let a light-headed spell pass.

3. What tasks are the hardest to complete after treatment?

Nothing is hard after treatments unless I have pushed myself to go below my dw. If that happens, the hardest thing to do it to stand for any significant length of time. I typically have to sit down after a minute or two of standing.

4. What do you typically do (strategies) to conserve your energy?

Sit down.

5. What are your biggest concerns with undergoing dialysis treatment?

It really depends on how one interprets the word "concerns". My biggest concern is my ability (or lack thereof) to control my fluid intake. I NEVER intake only the recommended amount between txs. I am normally about 1 kl over what they want your amount to be between treatments. On weekends (my 2 day gap between txs), I tend to put on quite a bit of extra fluid. Luckily, by the end of the week after I have received 3 txs, my weight is back down to where it should be so I'm good to go over the weekend where I again put on more fluid than I should.

One of the side effects of my having extra fluid in my body is that all of the fluid collects in the tissue in my upper body (chest, neck, and face). It seems that most people (not all - again, everyone is different) tend to collect their extra fluid around their ankles. The effect of the extra fluid collecting in my upper body is that my neck and face get really swollen. Due to my own personal vanity, I don't like the way this makes me looks. (I feel like I look like "A Fat F***K"!) I don't like it, but there is nothing I can do about it. Like I said, it is really all about my own personal vanity...

Hope this info helps!

[Sammiegrl]

Hi OT,

I have been  a Peritoneal Dialysis (PD) patient for just over a year now.  It seems as if this questionnaire may be geared more toward Hemo parients, but I thought I'd give my perspective on PD.

I do CCPD (continuous cycling peritoneal dialysis) using a Baxter Home Choice cycler every night for 8 hours.  I do 3  cycles (fill, dwell, drain) and a last fill that dwells in my abdomen all day until I hook up to my machine again that night.

1. What is a typical day like after dialysis treatment? What is a day like the day after dialysis?

Overall, I feel pretty good after dialysis.  The best part is that I do it at home, while I sleep, so I get a full night of uninterrupted sleep (uninterrupted by dislysis, anyway) and can then get up and carry on exactly the same wasy I did before dialysis.  Sometimes,  I feel a little sluggish in the morning, so it takes me a bit longer to get ready for work, but once, I get going, my energy increases.   Occasionally, I  feel a bit dehydrated from too much  fluid being removed, but that's an easy fix.  I love  that CCPD has almost no effect on being able to live my life the way I did before dialysis.

2. Do you experience any difficulties in daily tasks? Specifically, cooking and preparing meals?

None whatsoever.

 3. What tasks are the hardest to complete after treatment?

I have no difficulties with any tasks after treatment.

4. What do you typically do (strategies) to conserve your energy?

If I start to feel tired, I sit down and rest for a little while. 

5. What are your biggest concerns with undergoing dialysis treatment?

My biggest concerns are:

Is my treatment effective?  I have a monthly appointment at my dialysis center to monitor my treatment effectiveness.  So far, so good.

Will I be able to stay on PD until I can get a kidney transplant?  I know that, as with any medical treatment, there is potential for complications.  I've had such a positive experience with my current treatment, and I don't want to have to switch to Hemo.

   

[Sugarlump]

If this is for educational purposes, I would hope that as students you will ask a more important question, what causes post-dialysis fatigue? The answer to this question in many ways would obviate the need for the rest of the survey.

http://www.researchgate.net/profile/Adrian_Covic/publication/257206735_Dialysis-induced_segmental_wall_motion_abnormalities_post-dialysis_fatigue_and_cardiovascular_mortality_the_new_Bermuda_triangle/file/e0b4952cbdd62cab3a.pdf

Your link looked a bit complicated but I would like to know if there is a medical reason (in simple terms) for post dialysis fatigue.
I nearly always sleep for 2-4 hours post dialysis, I don't feel ill as such just very very sleepy.

[Hemodoc]

If this is for educational purposes, I would hope that as students you will ask a more important question, what causes post-dialysis fatigue? The answer to this question in many ways would obviate the need for the rest of the survey.

http://www.researchgate.net/profile/Adrian_Covic/publication/257206735_Dialysis-induced_segmental_wall_motion_abnormalities_post-dialysis_fatigue_and_cardiovascular_mortality_the_new_Bermuda_triangle/file/e0b4952cbdd62cab3a.pdf

Your link looked a bit complicated but I would like to know if there is a medical reason (in simple terms) for post dialysis fatigue.
I nearly always sleep for 2-4 hours post dialysis, I don't feel ill as such just very very sleepy.

Yes, high ultrafiltration rates common in American dialysis centers leads to low blood flow to the heart which causes damage with each session. In other words, dialysis causes a small amount of heart tissue to die with each session because of the excessive fluid removal and that is tied directly to post dialysis fatigue. That is in a nutshell what the article is talking about.