I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: loopywinks on August 22, 2010, 09:50:26 PM
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I have been on PD now for over 5 1/2 months and I just can't shake fatigue every day. I think I take off just enough fluid (I usually stay at a good weight) so I don't think I am dehydrated. I work in the schools.. so have had much of the summer off (although not the most relaxing summer). I am working on requesting a leave because my home and family responsibilities are really enough right now.
My hemoglobin is 12.7 (needs to be under about 11.5 for the "epo like shot").. my iron is at 96 (goal is 200-500).. Protein is a little low so I try to eat more protein.
Is this just what PD is like for some folks or am I just lazy and lame :)
I hope all of you are feeling well.
Take care!
Tracy (aka Loopywinks)
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This is what kidney failure is like for some (most) people. Fatigue is a fact of life for us.
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Yeah sorry to say it ..but :welcomesign; to the world of kidney failure and dialysis :(
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I know :) Sorry to rant about one of the most obvious symptoms of kidney failure.. It is a fact of life. Sometimes it is just so frustrating to not have the energy to enjoy life the way that so many others do. I had hoped that when I started PD that it would change (the nausea and fatigue). I have to say that the nausea has improved somewhat. It is just the fatigue.. and not being able to keep up. I feel guilty and weird because others look at me and tell me how good I look (my coloring.. and dropped fluid weight). I just got back from a start of school retreat that was a half day, and I know I could sleep for a few hours now. People look at me and think I am "normal" and I get irritated that I can't live up to it.
Anyhow... I appreciate this site because people here "get it" and it helps to know this.
Have a great day..
Tracy
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Have you had any ests done to determine what your clearance is? If you aren't getting adequate dialysis you will be tired. PD does not do a good job in some people.
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Tracy:
I highly doubt you are lazy and lame. :boxing;
When I was on pd and fatigued, I worked on a solution.
I met with my kidney doctor and my nurse. It was important to me
to determine the cause and then see IF it could be solved.
One piece of evidence is your low iron level. This can cause constant fatigue.
They gave me iron supplements.
Jeff :bump;
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Amen sista.....tired all the time. I am there! And I've been on PD almost 2 years. My thing is I don't sleep well at night.
It's always something.
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Another one here, 5 years on PD and still tired. I do work full time and am still trying to convince myself not to feel guilty when there is a sink full of dishes and laundry that needs doing and I just want to take a nap. You are not lame or lazy, unfortunately this is just how it is on PD. But maybe it would help to get an iron i.v., I've done it a few times when mine gets too low and it does help some. Good luck and get some rest!
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Yep. I have tomato plants with "special needs" (containers on a patio, hot weather) and I feel bad when I get home from dialysis and see them drooping and wilted, but I don't have the energy to even water them. :(
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I've always been inherently lazy even before I had kidney failure. Don't get me wrong I get things done that I need to and want to, but I've always had difficulty motivating myself to even make a start on anything which reqirers some effort on my part.
My problem is that I get sleepy very easily when I'm not doing something that actually interests me. Once I have finally motivated myself out of a state of lethargy I find I have lots of energy as long as I don't get bored of what I am doing. So I really don't know whether I get tired through kidney failure or lack of motivation.
I believe many able bodied teenagers have this problem but I am 62 for God's sake!
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My dad drilled into me that it's a wasted day unless you've done something productive. That worked until I got sick, and then it took a long time to feel okay with not doing anything worthwhile all day. I used to get motivated to do something, start it, really get into it, and keep working until I realize I hadn't eaten anything all day. Now it's hard just to get started; when I do, I can do it for a while but then I hit a brick wall and suddenly just want to finish and rest.
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how is your BP? Are you a little too dry? I find when I am dehydrated I feel super lethargic. A glass of water later (though sometimes 2) and I'm ready to run a marathon!
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Thank you for the thoughtful responses!! I love this site!
My BP has been close to normal. My BP meds keep it fairly steady and usually not too low. When I am low, I do feel it, however!! It does help to drink some water and/or iced tea :) I have tried to cut out any soda. My PD nurse tries to tell me not to drink too much. Since I still produce urine, I don't listen too closely LOL I am wiped out all day when too dry.. I usually make it for much of the morning, then hit my wall at about 2:00 and I have to lie down. I am pretty worthless if I don't. I know exactly what you mean, Restorer!! I REALLY do!! My tomato plants hate me :rofl;
Ken.... I think that part of being tired or "lethargic" is sometimes the overwhelming emotional toll that this disease takes on people. I love it when I find a distraction that makes me forget about it. I think we sometimes make an effort to "be strong" and "resilient" and act like we are really fine.. but the reality is, this can be a devastating and scary disease. Exhausting.
Tabby- 5 years!! You are AMAZING! I hope you are able to get your rest..
BrightSky- Does the dialysis keep you up at night? I tend to be a night owl.. and sleepy in the afternoon.. I typically sleep ok when I get to bed.. I think..
Jeff- My doctor is always so thrilled with my "numbers" and is so happy that I am adjusting so well to PD. When I mention my fatigue, she kind of ignores me. Did you figure something out that helps?
Del- I do my quarterly check for adequacy next month.. I guess I will know more then..
My experience with most nephs has been that they don't see this condition as a huge deal when considering quality of life. I know that they work with all of us and the approach is "clinical"... ultimately necessary of course. Mine almost does not believe that fatigue can severely impact a life... and that it is the least of my worries :) Maybe it is. I guess everyone deals with it differently.
This is a great group!!! Thank you so much for taking the time to respond! I am going to try to be here more.. I think it helps to chat :flower;
Best Regards :grouphug;
Tracy- Loopywinks
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it's funny the way this disease affects us all differently. I very rarely feel nausea or that deathly tired that I just couldn't function much. In the first couple of months of D I was more that way until i got stable. These days I work full time, walk for exercise, etc etc and I guess I am a luckier one that in those terms I feel like I am doing OK (I am on hemo). Yet others struggle with the fatigue and other symptoms.
Just an observation. Sorry I have nothing useful to add! :(
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Tracy,
I've been doing CAPD for over 6yrs and have felt great for about 95% of those 6yrs so I DO not agree with the statement that "that's how it is on PD" although if you ask my brother on CCPD for about 7-8 months he'll tell you he still feels crappy.
The only times I do feel "run down" is when hemoglobin, B/P or sodium levels are low.
For some reason I cannot get my sodium levels to come to normal (yeah I guess I'm lucky I can eat as much sodium as I want, but my level is below range).
Take a look at your sodium levels as well as your thyroid, maybe that's what the problem is.
Take care!!
Marina
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Thank you, Marina! I will be going in this week and will ask about those numbers :)
Have a great week!
Tracy
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We live month to month waiting to see our lab reports so we can try to understand how we feel the way we feel.
You hemo #'s look god but the iron is low.
Without Iron you cannot produce red blood cells which in return give your body oxygen.
When the iron canot produce the red blood cells we get the tired washed out feeling.''I would suggest you ask your neph/nurse about an iron Infusion. To take iron in an IV takes between 2 & 3 Hours depending on the amount of iron. I have ehard this is the best way to get iron??? I have heard taking it oraly isnt as good but i have never tried it that way.
That is my :twocents;....
I have been doing PD for a year and my energy comes and goes. I sadly think i am just getting use to it........
Good luck
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Tracy,
I have been on PD for 6 months. I felt great the first month, but then after that I am tired all time. My numbers are great in all ways. I understand you feel lazy because you're used to doing everything you normally did, but can't now. No matter how hard you try. It feels like once you run out of steam, you're done until you can recharge again. And I know I used to think, "I'll just push through the tiredness and finish what I'm doing" but I realized I can't push through it. I have leared to let allot of things go and to ask for help, I can't doing things like keep my home as clean as I like, going food shopping, etc. I do my best, but ask for help when I need it. You're not lazy and lame, you have a chronic disease.
Also, when people tell me how great I look or when they say I don't look sick. I just smile and say, "It's a silent disease!" Then we laugh
Good Luck
Tracey
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In addition to ESRD, you may have low thyroid. Many of the symptoms of ESRD are the same as low thyroid. Ask for a TSH test along with your next lab work. That's how I found out I had low thyroid and got medication for it.
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Hi Tracy (aka Loopywinks)
I am on hemo, but I certainly have empathy - there are days when it seems everything seems to be an enormous effort,, and reading the other posts, it seems this is a common scenario. I guess what did help me was realising that I might not be able to continue at quite the same pace (I am a convinced workaholic, and spent most of my life BD either working or thinking about it!) Now I have expanded on the SLEEP part - many weekends are spent in bed......!
I guess one needs to give oneself that permission, as well as keeping an eye on the obvious things such as numbers, nutrition and the like.
I can say that it has got better - or perhaps I have just become accustomed to it.
Hope it does improve for you, and that you recover some of your previous energy!
Best regards, and be kind to yourself!
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Hi Tracy, I'm a bit like Henry, I usually feel great and I'm on home heamo. My guess is that you need to watch both your iron and your red blood cells because if you are anaemic you will feel tired. I'm 75 and I still get around. You can still have bad days though.
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it's funny the way this disease affects us all differently. I very rarely feel nausea or that deathly tired that I just couldn't function much. In the first couple of months of D I was more that way until i got stable. These days I work full time, walk for exercise, etc etc and I guess I am a luckier one that in those terms I feel like I am doing OK (I am on hemo). Yet others struggle with the fatigue and other symptoms.
I'm the same way.
After two years on hemodialysis and various meds prescribed by my neph and dietitian, I feel pretty good. I wish my hemoglobin count were a bit higher, but I definitely feel better than I felt in years.
I feel stronger, I have more pep, my bones don't ache like they used to--and I've resumed regular aerobic exercise like I used to do before I got sick.
The price I've had to pay is that I have to follow a rigidly planned routine. I have Microsoft Outlook set to remind me of all the different pills and capsules I have to take throughout the day: Some meds when I wake up. Some meds during meals. Some meds right after dialysis. Some meds at bedtime. And I prepare all my meals myself for the right nutrients and electrolytes. I haven't eaten at a restaurant or company cafeteria since I was diagnosed with ESRD. It's quite a lifestyle.
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Dear Tracy
You defintily need to work through all the variables with your Nephrologist.
I've been on PD for about 6 months. Starting PD made a significant change in my energy level.
My work day typically starts at 5 am and goes to 6 PM. After working those hours, I still have energy to deal with the kids when I get home.
My nurse monitors my Hemoglobin, Iron and thyroid function very closely. Maybe you can work the yours to do the same.
Never give up, neve surrender.
Regards,
Fred