I'm struggling a bit

[MooseMom]

For a while now, I've been noticeably more fatigued.  My egfr has been at around 15 - 16 for about a year, but it just feels like recently I've felt more tired.  All of my blood values are just a hint below "normal range", and have been for a long time, so I can't say that I'm anemic, certainly not to the point that I need Procrit or something.  All of my other values are pretty much as they have been for a while, but these days I can barely pull myself out of bed.  I sleep pretty well, so I don't think it is poor quality of sleep.

I'm sure I am just like the rest of you pre-D people in experiencing this fatigue.  I will do housework for an hour or so, but then I have to sit down and rest (that's when I jump onto IHD).  If I've been really active...like, if I have taken my usual long walk...I might fall asleep in my chair for an hour or so.

Is there anything that y'all do to give yourselves a boost of energy?  Or do you just sorta go with the flow and rest when you need to?  I've never had to marshall my energy, so this is all rather depressing, but there you go.   Any suggestions?  Thanks!

[justme15]

welcome to my world!! except I think my world is a little worse. i'm still working, and on my way home today I fell asleep at the stoplight!!
I don't have a good answer, but what works best for me is to stay busy/active. once I sit down, it takes and act of God to pull me up from the sofa. I find that once I finally do get up, and stay up, doing various things, cleaning, etc, I'm able to do it without needing a break. With my job, once I'm out the door and working, i'm usually ok. but once I get home and relax, i'm done for the evening.
so I guess I don't have any real advice except you just have to push yourself.  I never really feel energized, unfortunately :-(.

[MaryD]

I was always tired, Tired, TIRED before I started PD.  But unlike justme I "went with the flow".  I am retired, so it was easy to schedule a short snooze in the afternoon.  It was energising to a certain extent. 

I could only work in short bursts.  When I got home from shopping I was too pooped to put away anything other than the chilled/frozen stuff - time to sit down for a bit.  30 minutes in the garden - best to sit down and attempt today's sudoku.  Load the dishwasher and wipe the benches - time for a row or two of knitting.

Since starting PD I am far more alert.  Now when I get home from shopping, not only does it get put away, but it's followed by 15 minutes in the garden.

I always felt that my pre-D tiredness was a slightly confused, thinking through the fog, lack of energy sort of tiredness.  It was definitely different to a low Hg tiredness, which always felt more like utter exhaustion

[monrein]

Hi MM...I've been off busy with holiday stuff for the past two weeks or more but wanted to hop in and say that there really was nothing I could do to jump start myself...just rest and do things in short bursts.  I used to garden sitting on the ground and all cooking prep was done sitting as well.  Even cooking at the stove sometimes I'd sit on a tall stool. 
Thinking of you and wishing that I actually had some "magic" to dispense.   

[MooseMom]

Hi MM...I've been off busy with holiday stuff for the past two weeks or more but wanted to hop in and say that there really was nothing I could do to jump start myself...just rest and do things in short bursts.  I used to garden sitting on the ground and all cooking prep was done sitting as well.  Even cooking at the stove sometimes I'd sit on a tall stool. 
Thinking of you and wishing that I actually had some "magic" to dispense.   

What, you didn't get any extra magic for Christmas that you can send my way?

Yeah, I do the gardening sitting on the ground, and yeah, I have a tall stool upon which I sit to do my chopping and stirring. 

I can't really complain.  I don't work outside of the home (ie, I'm "just a housewife" ), so I have the luxury of being able to do things in my own time.  In a way, I am grateful for having a very good reason to take things slowly and to stay in bed for longer if I need to.  I was just wondering if anyone had any tricks up their sleeve.

I am assuming that once I start D, I'll have more energy like some of you have experienced, but I'm not ready to make that leap just yet.  MaryD, yeah, I feel foggy.

[Rerun]

How often do you get your labs done?

[Deanne]

I'm always tired, too. I haven't found any answers, other than to do things in short bursts and nap a lot on weekends (I work full-time). I've mostly given up "optional" things, like hobbies, painting (haven't finished painting my closet doors & trim), cooking. I make myself go walking with friends on weekends, about three miles each day, because I know I'll only feel worse if I don't do it. It's all short burst though. Get up, shower, dress, have breakfast, sit on the floor to throw a ball for the dog. Vacuum, then lay down and watch TV and nap. Get groceries, then back to the couch. I tried going to the mall a couple of times recently, just to get out for a while, but it was exhausting and not much fun. I'm not sure how I'll handle yard/garden work when spring comes around. I'm a single homeowner. I was thinking about hiring someone to help with it, but I might try to force myself through it because I think the exercise and activity is still good for me.

[MooseMom]

How often do you get your labs done?

I get a full work up every other month (or every three months if I can't get an appt on time), but I get a basic metabolic panel done every month.  I have to get a sample drawn for the Gift of Hope histocompatibility thingy, and to avoid the $40 draw fee, my neph has provided me with a standing order for a BMP, and the lab will do the GOH draw for free.  So, I get monthly checks of things like potassium and calcium.

[MooseMom]

I'm not sure how I'll handle yard/garden work when spring comes around. I'm a single homeowner. I was thinking about hiring someone to help with it, but I might try to force myself through it because I think the exercise and activity is still good for me.

In anticipation of a downturn in my energy levels, I have replaced the front lawn with mulch, paving and perennials that require little care.  I knew I didn't want the hassle of keeping up a lawn.  So now, all I really have to do is put down mulch each spring, hand weed and do fall chores like cutting back the paeonies, etc.  My back garden is north facing and is quite wooded; grass is very difficult to grow in such shade, so I don't bother with it.  Over the years, I've allowed the leaves to fall where they may, and it has created more of a "forest floor" type environment than a cultivated yard.

We have a local charity that tries to provide housing and employment opportunities for developmentally disabled adults, and recently they started a program where they will come to your home and do light gardening.  I thought we could help each other, but after they came and assessed my needs, they declined.  I was really shocked.  All I wanted was for them to maybe do some raking in the autumn (we have a LOT of trees!), so I am not really sure why they turned me down.  Anyway, that might be something you could think about.  But I do get your point about wanting to stay physically active.  That's why I refuse to own a snowblower.  I do all of the snow shovelling around here!   Oh, and those leafblowers!  IF I CAN USE A RAKE, YOU CAN, TOO, SO SHUT THAT BLOODY THING OFF!

[JustDee]

I am so glad I'm not the only one that has to "rest" after doing the laundry and dishes.  Those of you that are still doing gardening get my bewildered admiration.  I work full time (sort of) and when I'm home I am almost useless.  Hubby does all the cooking and what little cleaning gets done in very very extremely short bursts.  We are trying to buy a new home, our current home is 1700 square feet on 8 acres, to downsize to something more manageable.  I know that when I get on PD it's gonna take a lot of room for the supplies but we really don't need this big house with 3 bedrooms just for the two of us and our two dogs.  Plus the land is ALL hilly, almost no level ground, so because of my years of gout I don't walk at home much..I really think walking more would help my energy level.  If I knew for sure that dialysis would make me feel better I might ask the Doc to get me started in that direction.  I'm at "13%" with a creatine level of 3.2 so dialysis is probably just around the corner anyway.  I think the Foggy feeling is even worse then the fatigue...I feel like I'm lost my mind...and I miss it!!!!

[Jean]

Well, MM, my numbers are somewhat better than yours, but then again, I am 72 now. My idea of housework goes like this, work for 10 minutes, sit for 15 minutes. If I keep at it I can accomplish a lot in one day, however, I never did get out in the yard much this summer, and boy does it look bad. A year or so ago, I would have dropped dead rather than have my yard or my porch look the way they do. Now, I just walk on by. I am enrolled in a clinical trial for a drug like Procrit and I have been so hoping for some help in the energy direction, but so far, no good, at least in the way I feel. I will find out what my numbers are tomorrow.

[kristina]

Are you eating enough?

I went through such a phase when I was being too careful about my daily portions
and I think I depleted myself a bit of nutrients...
I now eat a little more and I feel much more energy...

Good luck from Kristina.

[Mr. B 123]

M M,

I have the same lack of energy, about 3-4 in the afternoon if I sit down for more than 5 minutes I will fall asleep.  Usually my wife and boys just let me nap for a while.  Then about 10:00 p.m. I can't stay awake thru the TV news and fall asleep again and then wake up at 1:00 a.m. and will be awake until about 4:00.  I have had crazy sleep patterns for about a year.  My eGFR is at about 25.  I just nap when I need to, problem solved. 

Hang in there!

[lmunchkin]

J. seems to be more energetic during the summer months than winter.  He does seem to sleep alot during the colder months.  Not that thay is what you are talking about, but it could be a contributor! Heck, Im not all that energetic during winter either, Lol.

lmunchkin
 

[willowtreewren]

MM, before Carl started dialysis he would come home from work, sit down, and zzzzzzzzz.

It didn't matter what he tried to do to stay awake. I would go ahead and fix dinner and wake him up to eat. Then after dinner he would read, which was code for holding a book in his hands with his chin resting on his chest. Around 8:00 PM he would rouse himself long enough to look at e-mail or whatever for about an hour and then head to bed.

He wasn't "feeling bad" but he certainly wasn't much company! 

 

Aleta

[MooseMom]

I know this is going to sound odd even though I've mentioned it once before, but out of all of the meds I've taken over the past 7 years, the only one to give me any gyp is the renvela.  When I started this thread yesterday, I was feeling decidedly worse than usual, and then I remembered that I had taken my binders at lunch instead of at dinner as I usually do.  At the moment, I am to take 2 binders with either lunch or dinner.  Yesterday, I judged that what I was going to have for lunch would be more phosphoric than what I was going to have for dinner, so I took them at lunch, and boy, did that make me feel awful.  When I have them at dinner, I suppose I sleep through the ill effects.  I just don't understand why binders, of all things, would make me feel so rotten.

@Kristina, yes, I do think I eat enough, although I have found that I tend to eat less at meal times but need a snack around 4 or 5 in the afternoon.  We rarely eat dinner much before 7:30, and if I get hungry, well, actually I will feel nauseous before I feel hungry, so I'll eat a little something and will feel better.

@lmunchkin, yes, the colder weather does make me want to hibernate, although up here we have not really had much cold weather late, which is odd.  I love the dark, dreary days because it makes me want to stay all cuddly in bed longer, and I will often indulge that whim.

@Mr B123, I have a crazy sleep schedule, too, but I do so more for psychological reasons, I think.  I will read until maybe 2AM, and then I will sleep quite well but not awaken for good until maybe 10AM.  I know that makes me sound like a lazy toad, but I get my eight hours, and there's no one around to really care when those 8 hours being and end.  I have made the miserable discovery that if I sleep really late, it gives me fewer daylight hours that I am alone in this house before my husband comes home from work.  Fewer hours in which to stew and worry about my crap kidneys...

@ Jean, that's interesting about the clinical trial.  I'd love to know more about that.  Did you find out your numbers?  Don't you just love getting lab results?   God, I really hate that.  I get into such a tiswas about 2 days before my neph appt.  I hope things are at least not any worse for you.

[Hemodoc]

My worst days are when I have too much phosphorus or sodium. Fortunately, I have not had to take any binders so I can't comment on that aspect but it doesn't sound like a lot of fun. I find that the longer I go on dialysis and CKD, the more I have to pay attention to my diet. One thing I found is the hidden phosphorus in so many of our processed foods that don't agree with me at all anymore.

I have gone to a very generic, home cooked diet and avoid most of the processed foods that I used to tolerate just a couple of years ago. Reevaluating your diet for some of these elements might be useful.

Many medicines also have a side effect of fatigue and there are common causes of fatigue such as sleep apnea, hypothyroidism and other ailments that you should discuss with your doctor. Sleep apnea is a higher risk in dialysis patients and ESRD patients.

Unfortunately, fatigue is a constant companion of CKD and ESRD which will improve with good dialysis that raises your GFR back to 30 with nocturnal home hemodialysis. Even though your numbers are less than what current levels recommended for starting dialysis, it may simply be that after fighting this battle for so many years, you are actually approaching the time when renal replacement therapy will become a reality. In many ways, the few weeks prior to starting dialysis were the worst as far as how I felt and did improve when I started dialysis. However, even today, fatigue is a constant companion. Uremia takes a lot out of our bodies especially for those that have enjoyed truly active lifestyles in the past.

Exercise is important as you have noted, but I do believe it is worth discussing with your doctor to check for ordinary causes as well most of which are noted by simply looking at your symptoms, physical exam and some fairly simple blood tests. Just because we have renal disease, we should remember that there are other correctable causes of fatigue that a doctor should always consider as well. Wouldn't hurt to run this symptom past your medical team to get their input.

Be good and keep learning and reading. You are way ahead of the game already.

God bless,

Peter

[MooseMom]

Thanks for that, Hemodoc.

I do not eat a lot of processed foods at all, but when I do, I am an avid label reader and am very mindful of inorganic phosphates.  I like to think that I am successfully adhering to my diet, but I will examine it more closely.  I have been following a pre-renal diet for 7 years now, but perhaps I have become lazy and less vigilant, so yours is a good suggestion. 

I have had my thyroid checked, and it's OK.  I have thought about sleep apnea, but I have no evidence that that is a problem for me.  Do you have any idea why exactly sleep apnea is so common in renal patients?  What's the connection?  I've always thought that was odd.

I do understand that fatigue is a "constant companion" of this disease, and some days are better than others.  Today was better than yesterday simply because I made sure to take my binders in the evening.  I find that my mood in an important factor in this equation; if I am less stressed, I have more energy.  If I have something to look forward to, again, I feel more energetic.  If I have a dreaded neph appt where I will hear yet another set of lab results, well, I don't feel so great.

And you are absolutely right to remind me that CKD can't be the cause of every single ailment or symptom I may experience. 

Do you really think my numbers are "less than what current levels recommend for starting dialysis"?  My neph's nurse told me that they don't really start thinking about initation dialysis in asymptomatic patients until egfr reaches 10 or so.  I get a very thorough checkup every other month, my fistula is ready to go and no one has yet started mentioning dialysis.  I am thinking that my neph may be of the mindset that early initiation isn't the best thing for me, thank goodness, but I do realize that when to start dialysis is the "billion dollar question" as posted on RFN!

Thanks so much for your encouragement.  It is very much appreciated.

[Hemodoc]

Not sure the exact connection of sleep apnea and CKD. Most patients it relates to obesity.

As far as starting dialysis, a paper last year showed early starts had worse outcomes. In the last couple of decades, the dialysis patient has started earlier and earlier. The prior starting point for many was 14-15, but with the study from last year, they are now looking more at 9-10 but that is dependent on clinical symptoms as well. I think that you will find when you do start, that you will feel much better early on with the added clearances of your residual GFR and dialysis combined. Preserving your remaining GFR once you start should be a big part of your survival routine first by avoiding any nephrotoxic meds, and secondly by getting good, slow and gentle dialysis.

Rapid ultrafiltration rates in some studies induced acute renal failure in the remaining kidney function and most folks are anephric, or unable to pee shortly after starting dialysis. There is an obvious aging decline that is going to occur, but much in my opinion is from the aggressive dialysis techniques. That is one reason that PD preserves renal function better than Hemodialysis. I know of one researcher looking into the daily dialysis to see if GFR is preserved by daily dialysis. That would be a huge plus to show since residual GFR correlates to survival.

[lmunchkin]

Excuse the intrusion to your post MM, but Hemodoc, is that also the reason they want people who are eligible for a transplant to try PD first, because it is much more gentle on what ever renal function they have? Hemo is more intrusive because it is systemic?

lmunchkin
 

[Hemodoc]

Excuse the intrusion to your post MM, but Hemodoc, is that also the reason they want people who are eligible for a transplant to try PD first, because it is much more gentle on what ever renal function they have? Hemo is more intrusive because it is systemic?

lmunchkin
 

There are different reasons to consider PD first which is advocated by some groups as the best first line RRT. They note that some studies show that there may be a survival benefit coupled with saving the dialysis access for a later date. For some, that has been a good option because it allows more independent living as well as slower loss of residual renal function.

However, I don't believe that I have seen any studies looking at PD compared to Home hemodialysis especially the nocturnal daily option and how survival and complications compare. In general, NHHD has mortality benefits equivalent to cadaveric transplant according to a study by Pauly et al in 2009.

For someone that has a donor lined up and needs a bridge to transplant, some have done very well using the PD option on  temporary basis. If your wait for transplant is going to be a long time, I believe that survival in most instances is probably better going the home hemo route with daily dialysis.

[lmunchkin]

Thanks Hemodoc.  This makes sense!

lmunch

[malaka]

This might well be my last post here in this particular "pre-dialysis" forum as I got the word from my nephrologist today that pending the results of today's blood work, I may be starting dialysis this week.  Hemodialysis at a center, pending this week's evaluation for PD. 

While I may still do home dialysis, the more I looked into PD, the better I liked the idea of being machine free (at least part time) so I wasn't trapped at home or in a center.  Sure, I could move about on home dialysis, but the thought of lugging the equipment around wasn't too appealing. 

Then I spoke with an acquaintance who was on PD and somehow regained sufficient kidney function to be free of all dialysis.  Apparently, there is some truth to the idea that PD retains kidney function fairly well. 

I'm not looking forward to having a tube sticking out of my belly, but I think 4+ exchanges per day at 1/2 hour each is better than having needles sticking into me 3 hours per day.
And, at age 59, my career as a male underwear model was over long ago so the tube/scar thing doesn't bother me.

On the brighter side, I got a Kindle so I can read with one hand while sitting at the hemodialysis center.  I hope it works!

[MooseMom]

Oh gosh, malaka, you sound so calm and composed!  I'd be sobbing in a corner somewhere dark and disturbing.

It's so hard to know which modality is best until you're actually using it.  Such a hard decision.  If PD sounds best to you, then I hope your evaluation will show that it will indeed be suitable for you.  I, too, have heard that it is good for retaining residual renal funtion, so that's definitely a plus.  I'm sure you've read the posts from all of the people here who love it.

Do tell us more when you find out, OK?  I'm very eager to follow your story.

How has this news hit you?  Do you feel pretty well prepared, or are you really freaking out?  Do you feel like the time has come for you to start?  What do YOU think?

[JustDee]

I'd do think I'll be in the corner with MM Crying and pulling my hair when the DAY comes.  Knowing that Dialysis is "somewhere" in my future is a far cry from "come in tomorrow and we'll set ya up".  I too am going to give PD a try......again, sometime in the distant future....so I'm eager to hear all the details of your experiences Malaka.  Be strong, be brave.....you are going where no one has wanted to go before.