Physical exhaustion

[Sunny]

How do you deal with the physical exhaustion resulting from kidney disease?
I deal with it by limiting my activity. That works, but sometimes you've got to clean the house, Right? And make long car trips, right?
Well that's where I am right now. Yesterday I had to drive my son to San Francisco, 1 1/2 hours each way. Today, after putting it off for 3 weeks, I
cleaned the house. Now I am paying for it with the total and complete physical exhaustion that never existed pre-ESRD. Every muscle fiber, every
joint, every brain synapse is in total colapse. I should have known better. I should have relegated myself to the simple pleasures of reading a
good book today after my trip to San Francisco yesterday. How many times will I be making this mistake till I finally learn. And it's Friday. My husband is going to want to play this week-end after his long work week. Not to mention the First Communion I'm supposed to attend on Sunday. I should have let the house continue to get dirty.
What's your secret regarding issues like this?







EDITED:Moved to general dialysis discussion-kitkatz,moderator

[BigSky]

Exercise is the secret.

The more you do not do anything the more it will wear you out when you do start doing something as you lose all endurance that you had.

[st789]

Pace yourself.  Keep things simple.

[monrein]

I'm at the moment unable to do much of anything due to nausea and exhaustion but I'm hoping that will improve once I start dialysis.  My friends help me with some chores and my husband is very undemanding about anything.  However he doesn't think that many of the things I consider necessary for home maintenance are at all important so I pay people to help with things I can't do right now.  Cleaning lady every 2 weeks ,
gardening help for heavy jobs, someone to clean windows outside.  My husband does all grocery shopping and cooking, not his usual role but no choice for right now.  Most importantly I try not to stress out about stuff.  At first I worried about the money to pay for a bit of help now and then but I'm spending way less than when I was healthy and running around so it balances out.
I also agree with the exercise suggestion but easy does it.  Don't overextend and seek to conserve so you'll have energy for the next day but you know that already.
I think you're pre-dialysis too right?

[paris]

Sunny, I am right there with you.  If I had the energy to walk, let alone exercise,  then I could clean, cook, and do all the "normal" things I use to do.  It is overpowering--like you just can't put one foot in front of the other.  It takes too much energy just to lift your arm.  And no amount of sleep or rest makes it better.  It seems like the fatigue doesn't hit everyone. Fatigue and vomiting are two of my biggest symptoms.   How do I deal?  Well, I have lowered my standards on how clean my house is. Crockpots are my best friend. And I don't worry about what people think anymore.  Give yourself permission to rest whenever you can.  Some days are better than others. On a good day, get a couple of things done.  On the other days, rest!   I do think it is different for women, because we are the caretakers of the home and are very use to doing everything for everyone.  My husband says not to worry, but I do still care about my home.  Well, now I am just rambling!!    I do hope it gets better for you

[jbeany]

Remember that the only one expecting you to do things like you used to is you.  When I was still dragging myself with every step, I learned to do things in small doses.  Clean one room one day, another room the next.  Schedule your rest time so that you always rest the day before and the day after any major activity, like long car trips, etc.  Anything that can be broken down into small, managable doses should be done that way, not all at once.

Also, make sure that your doctor is checking your iron levels and hemoglobin levels.  I was on epo for 10 years before my kidneys failed enough to need dialysis.  I also started getting iron tranfusions long before dialysis as well.  There's no reason not to treat the anemia, even if you aren't going to a dialysis clinic yet.

[kidney4traci]

I know pre dialysis I couldn't even go upstairs it would tire me out.  I understand and feel your sorrow.  It is not you, just your toxins and iron.  Can you take epo?  I know it really helps me.  When I get really tired too quickly I can tell my hematocrit must be down.  Just know that your family wants you around, not the clean house.  Let it go or hire someone to help you. 

[stauffenberg]

Although there are many factors which contribute to the exhaustion of renal patients, the overwhelming cause is anemia, which can be safely corrected by EPO injections only to a limited extent.  While healthy people normally have a hemoglobin level of around 120 for women and 140 for men, renal patients, because of the limitations on the safe use of EPO, are generally kept at a level of around 100 to 110, which counts as severe anemia by ordinary standards. 

There is not much that can be done about this, beyond making sure that your nephrologist is keeping your hemoglobin levels at as high a level as can safely be achieved.  EPO dosing involves a risk/benefit assessment, and if you are willing to accept a higher level of risk of a stroke from the EPO dose being too high, you can ask the nephrologist to put your hemoglobin level up into the 120 to 130 range.  That is what I did when I was on dialysis, since for me the exhaustion of anemia made the risk of higher hemoglobin well worth it.

[migaguiar]

I agree, pace yourself. I walk so slow!!!!!! Old people pass me up on walks. But i dont care i feel good afterwards and i got to take advantage of me feeling well that day.
Also, as far as doing stuff never put off something you could do today because youll never know when youll have another good day.
Epo makes a BIG difference for me as well. HUGE.

[Hemodoc]

Funny, that you mention exhaustion today since the last couple of days I have been more tired than usual.  Yes, Stauffenberg is correct that anemia is one of the causes of fatigue.  Further, the more you do less, the less you will do.  Pacing and exercise have likewise also been mentioned.  Interestingly, exercise is one of those factors that has an immediate survival benefit that also lasts.  You can reduce your chance of dying by 10-15% with exercise 3-5 times/week.  

Lastly, Europe uses much less Epo than the US and one of the manners in which they do this is with iron supplementaton.  I have IgA nephropathy and I have gone without Epo since the black box warnings came out on it over a year ago.  My Hb is over 13 with exercise and iron supplementaton alone.  Certain disease states such as PKD likewise are known for low use of Epo.  Epo increases the risk of graft clotting from a baseline of 2% to 7%.  It also increases the risk of heart attack, DVT and stroke.  It further can accelerate an underlying malignancy since we have learned this from the use of Epo with oncology patients.

Epo is truly a two edged sword.  I would highly recommend discussing with your physician the use of exercise if you are able to participate as well as optimizing your iron levels.  Without iron, i had drifted down to 10.9, and with iron and exercise and NO Epo, I have been in the 13s for several months.

Lastly, don't forget the diet which needs to have fruits and vegetables coupled with stress reduction and appropriate rest.  Further, make sure that you are recieving good dialysis.  You should know what your online clearance levels are which are measured with a sodium clearance test by your dialysis machine.  The government standard is 1.2, Fresenius has a standard of 1.4 which is just the minimum levels.  If your clearance is low or just over 1.2, don't settle for that.  When Baxter recalled the heparin, my clearances started to go down.  I have a wonderful nurse who suggested that we look at the amount of clotting in my artificial kidney and sure enough, we found that with the switch of heparin products, I needed to increase the heparin.  We further increased the size of the kidney and increased the blood flow rate to 450 and I started getting clearances in the 1.6 range.  I have gone back to 400 because my arterial and venous pressures were getting a little too high.

So, exercise, eat correctly including your fruits and vegetables with the appropriate care to avoid the high K and high phosphorus foods, avoid stress, get your rest, know your daily clearance test and discuss with your doctor and nurse if it is not optimized, look at your artificial kidney for blood streaks at the end of every session to make sure you have optimized your heparin dose.  

There is not one simple solution to avoiding fatigue, it is a multifactorial solution.

Finally, switch to a daily home dialysis, short or nocturnal and you should likewise have a significant improvement of your fatigue, or do as Stauffenberg has  done and get a renal transplant which is also an excellent method of improving your fatigue levels.

Peter

[kidney4traci]

I agree with hemodoc, drugs are not my first choice, I do not like the side effects.  I do like to try and juice beets often as they are a great natural source of iron.  I do feel the positive boost when I get enough epo, and wish my diet alone would support me not having to take it.  I have tried many times, and it lasts for a while, but then I find it hard to maintain.  The epo only works when there is enough iron in your blood anyway from what I understand.  I thankfully do not have to have any heparin products for over three years.  My goal is to stay as dug free as possible, and feel that helps my overall health too.  That is another reason I have had some trepidation about getting a transplant as well due to the drugs you are to take for  the life of the new kidney.  I pray that I will be a part of the new non-steroid therapies they are looking at at my hospital.  They say I am a good candidate for that new protocol.

[paris]

Arenesp and iron infusions get my number to 11 or 12. Without, I go down to 8 very fast. It does not matter how much food I eat with iron, exercise, etc.  So, I think we have to acknowledge that, again, we are all different and hopefully work with a neph that finds what works the best for us.   Three years ago, 13 was the number my neph was working toward, then with the new warnings, 12 is the goal.  I can tell a huge difference between 11 and 13. When it drops to 10, I really feel it.   I am glad there is something to help stimulate the production of red blood cells, or I would be in a much worse condition.      I think those of us at pre-dialysis stage(I'm at 15%) deal daily with the fatigue.  I am hoping when dialysis starts, the fatigue will get better.  Any one's thoughts on that? 

[jbeany]

I am hoping when dialysis starts, the fatigue will get better. Any one's thoughts on that?

After I got thru the first month, I did feel a better - at least on the off dialysis days.  NxStage makes me feel better even on dialysis days.  Switching to home hemo has doubled my energy levels - I can do a lot more now than I've been able to for years.

[paris]

Thanks jbeany,  that is encouraging!  That is exactly what I wanted to hear.

[jbeany]

Thanks jbeany, that is encouraging! That is exactly what I wanted to hear.

The running joke around here is that "nothing" has changed.  Meaning - when I used to say I did "nothing" all day, I meant I was too tired or sick to even get out of bed, and if I was lucky, I made it down the hall to get some food before I staggered back to bed.  Now, when I say I did "nothing", it means "nothing special" - just did the dishes, a couple loads of laundry, read a book, got in a light 20 minute workout, took a shower and made dinner. 

[migaguiar]

ok, now before i go ask my nurse and get a biased answer, what is a low dose of EPO?
i take the red tiny vial that has the 10 on it.
I take 6000 x1 a week.

I too will drop quickly without EPO.
They have given that thick black iron supplement through a needle but only when my HB gets low.
I think i should start taking iron pills daily , which i used to, and work my way to taking myself of EPO if at all possible.

[BigSky]

Iron tablets are poorly adsorbed, especially in the dialysis population.

IV iron should be given when necessary as per a person iron levels in the blood.


As to the black box warning on epo, aranesp.  That only tends to be a problem when dosing is not done according to manufacturer directions.  The study that showed the clotting was done on healthy individuals who already had a hb of 13 or higher.  Relatively few dialysis patients are even close to that range without epo or aranesp and dosing should be reduced once they hit 12.

[stauffenberg]

That's the problem: anemia for males begins at values below 140 (1.4), so the entire male dialysis population is kept at a hemoglobin level which should make them exhausted. This is only going to get worse now that the panic in the medical community about the dangers of bringing hemoglobin values too close to normal in the dialysis population has been intensified by recent studies, by the FDA, and by the US Congress, which wants to reduce the dialysis costs of Medicare so as to save taxes on the rich.

You cannot make red blood cells with iron alone.  Erythropoeitin is also needed, so just taking iron supplements or eating foods high in iron content won't solve the problem.

[paris]

You have to seperate the two --- your iron stores, which is the iron level they check with you routine labs and your hemoglobin, which is your red blood count.   Red blood cells need iron and they need the hormone Epo replaces to stimulate red bloodcell production.    That is why some of us need iron infusions and Epo and others just need Epo.    Hmmmm--did I get all of that right?     Women, for most of our lives, need a higher level of hemoglobin than men for obvious reasons.  We are always losing blood and needing it replaced.

[KICKSTART]

Not all tiredness or lethargy is due to Anemia , i have this past week started on yet another b.p. tablet and am having all the symptoms you would think were anemia related ..tiredness ..weary ..short of breath , but all these things are being caused by my b.p.tablets , how do i know ? Well i can tolerate the smallest dose of a b.p. tablet but as soon as they increase it , i manifest all these symptoms , stop the higher dose and within a day or two i feel normal , well more energetic , no shortness of breath or the need to rest all the time.So it might be worth checking out medications before you presume its always anemia !

[thegrammalady]

the dishes will be there tomorrow. and the couch is a very comfy place to nap. don't sweat the small stuff. in fact redefine the small stuff. what used to be important just might not be that big a deal any longer.

[Sunny]

Good advice, all!
Pace myself. That is the #1 solution.
This week I will pay closer attention to my blood work stats to see if there is an issue there. The idea of regular excersice to build stamina is good.
The effects of blood pressure medicine are also very significant, as I have run into this before. Being pre-dialysis, I think I'm operating
on low reserves in general.

[okarol]

My husband went to a month at the pain clinic at Mayo a few years ago. They said when you're tired or in pain, try to stay close to your family and pets, even if you're too tired to do anything. They suggested watching movies with the kids or relaxing on a blanket under a tree, rather than isolating yourself away in bed. And try not to do more than one thing a day, to minimize fatigue. So maybe go to the doctor on Monday, get a haircut on Tuesday, water plants on Wed., go get labs on Thursday, marketing on Friday. Break things up so it doesn't get too overwhelming. It really helps if your family and friends are understanding about your limitations, but that's not always a given.

[migaguiar]

I also do short burst.........like 30min chore........30min relax.......but real relax. Not the half way stuff.

[Steve-0]

People just don't get it when I tell them I'm tired.

When I'm tired, I'm tired in a way that most people will never know!

~Steve