What's "Normal" on Dialysis?

[renalpenguin]

I know nothing is really "normal" on dialysis, but what's typical for a dialysis patient? I've been on pd for three months now and I feel totally terrible- I'd say maybe 3 out of 10. I'm dialyzing (sp?) well, my labs are great, and I'm doing everything I'm told, but I feel very weak. For example, I feel fine sitting down, but walking around is tough. I'm just 18, but walking from my car to a store's door is tough... by the time I get to the door I'm in one of those drive-yourself-wheelchairs. I know dialysis is awful, but what's typical?  On a scale of 1 to 10, what's a typical day for you, 10 being someone who is "normally" healthy? Just curious!

[totosidney]

My normal day is:
1. Go to Work.
2. Get home and Aerobic Exercise and Strength Train
3. Eat dinner and Wash Dishes
4. Hook myself up to hemodialysis machine (6 days a week)
5. Go to bed
The key for these many years on dialysis has been the exercise. Without a vigorous strength and endurance program your body will spiral down. The physical failure can be reversed with effort. I am able to work and play at a level of about 6, or somewhat above average for a healthy man my age. If you need any sort of support or advice in starting an exercise program, just ask. It needs to be done carefully with your Doctor on board. sidney_46534@yahoo.com
best wishes...Sid

[monrein]

Are you getting enough protein by any chance?  From my experiences with D I think that your fatigue and weakness are NOT really within the norm, and even more so because of your age.

[KICKSTART]

Anything is normal ! Everyone is different ! You will have days you feel you can climb a mountain and days you can hardly climb the stairs. 

[Restorer]

I'm just 18, but walking from my car to a store's door is tough... by the time I get to the door I'm in one of those drive-yourself-wheelchairs. I know dialysis is awful, but what's typical?

I only felt like that on PD when I was really overloaded with fluid and not eating well. I'd get out of my car, walk across the parking lot to the store, rest at the door, walk halfway through the store (say, a big one like Target or Walmart), rest again, etc.

Do you have any swelling in your legs? Are you on a beta-blocker? (That did it to me also.)

[Rerun]

Can you check your blood pressure at home or when you are having a weak episode?  It sounds like they have you too dry.  Are you also on blood pressure medication?

You are describing someone suffering.  You should have some good days on dialysis.

[RightSide]

I know you said your labs are great,
but does that include your hemoglobin count?

Kidney failure does cause anemia--and anemia can make you tired and weak.  (My hemoglobin count had dropped to 7.4--roughly half of normal--and I felt like crap.  Barely able to walk a few blocks.)

[Tracy]

I have only been on dialysis for a month (hemo).  I felt horrible.  I couldn't go to to work for the next day after D.  I think I have finally figured out, they are taking me to dry.  At 56.6 I can't function.  At 56.7 I am fine.  It is a very fine line.  I hope you get to feeling better soon.  Hang in there.   

[looneytunes]

Oh penguin....as said ealier, everyone is different and there are so many variables.  My husband felt pretty good the first 3 months of PD with more good days than bad but then he started having more bad days than good days.  Like you, he couldn't hardly walk in a store and most often would wait outside while I did the shopping.  He could fall asleep mid-sentence almost.  He would wake up tired and was sleeping 13 to 16 hours a day.  After 2 yrs the neph said PD was no longer working for him and at that point, he was having 9 bad days to 1 good day.  His hemoglobin was down, his albumin was dangerously low and his clearances were less than adequate.  So, now we are on NxStage and it has been amazing to watch him bounce back.  After just 2 months, he is back to working every day and seems to have found all the energy he had lost. 

I hope you find some answers soon. 

[Quickfeet]

I'm in the same boat as you. I have been doing pd for about a week or two. I really hope things get better for both of us soon. 

[kitkatz]

I felt weak and crappy on three day a week dialysis, I changed to nocturnal hemodialysis and it helped a lot.

[peleroja]

Normal is pretty much what everyone mentioned or suggested.  When I'm feeling really good, I wash dishes, do laundry, tidy up, move things, etc. (like today).  When I feel like crap I nap and take it easy.  Every day is different.  Hope you find out soon what's keeping you down.

[renalpenguin]

Thanks everyone- I think I figured it out. My hemoglobin was good (12.6), didn't seem to be dry, blood pressure good (110/70 or so), albumin higher than it's ever been (4.6)... and the pd nurse said my potassium "wasn't high". When I asked her what it was, she said 2.2 ("oh yeah, that is a little low- you might want to do something about that" she said. I was kind of mad!    ) So I had some no-salt French fries and potato chips over the next couple days and I am now doing much better. Not great, but better!

[Tracy]

yea! That is great news.  Hang in there!!  Tracy