Exhaustion

[Naynay99]

Hey. Just checking in to say hi and vent a little about how tired I feel lately.  I restarted work last week, but yesterday was my first actual day with kids.  It has been like 95 degrees out the second day in a row, and I am feeling like absolute shat.

I am so tired- I came home from work yesterday and took a 3+ hour nap in the AC.  Didn’t make dinner until 9 pm!    Being on my feet all day in the sweltering hot classroom is brutal, and I am wondering how the hell I am going to do this every day and actually have any sort of life if all I can handle is working and sleeping!!

I know the weather will cool down soon but I feel like crap.  I am trying to sit down more at work but it’s not very conducive to teaching- u are constantly up and helping kids.  And my brain is mush- I have been having word retreival brain farts and I don’t think I remember a single kids name yet.  Ugh.  So. Very. Tired. 

On another note, my coworker who offered to donate to me is out- she has a thyroid thing.  It was nice that she at least made the offer.  I know I shouldn’t take it personally but it’s kind of soul crushing when the ppl closest to u don’t offer.  I’m trying not to measure my self worth by how many kidney offers I get bc I know that’s irrational and yet I probably am.

Okay enough whining.   I need to suck it up and just keep showing up. I know things could be a lot worse.  I’m just frustrated at not being able to do all I used to without ending up exhausted.  I don’t want to bust my asss all week working just to waste the entire weekend recovering so I can do it all over again.  I am trying to check stuff off my bucket list, not waste my free time in bed.  Bleh.

[Naynay99]

Hey. So in hindsight I think perhaps my extreme tiredness this week was due more to being close to having heat stroke than to just having kidney disease.  Sitting in my AC has helped a lot.  I may have overreacted? 

Afterall my labs have all been stable and extreme tiredness is the only real side effect I’m experiencing at the moment.  My mood is even pretty good lately.  .

Plus- I have an early dismissal tomorrow bc of the heat!  Yah- It’s like the summer version of a snow day.  My job really is pretty great when it isn’t busy sucking- I actually get paid to blow stuff up and hang out with kids all day.

Anyways, hopefully it will cool off soon. Sorry for whining. Take it easy everybody. 

[cassandra]

Hi Naynay99 I'm glad to read you're feeling a bit better. Don't worry about the whining, it's part of the deal and why this site is here.


Nb I'll try and find you an article that explains why people with diminished or no kidney function have a problem with changing weather, extreme weather etc.


I'm sorry that your potential donor had a thyroid problem. I hope she's getting the help she needs.


Good luck, love and strength, Cas

[Charlie B53]

Sorry but I don't remember if you are on Dialysis already or hoping for a Tx before needing to start.

Long before beginning dialysis I started getting tired, exhausted more like it.  It was a serious chore just getting through my working day.  I pretty much always worked outside and the combination heat and humidity during these Missouri Summers almost kill me.  I went through a LOT of fluid, my legs would swell up like balloons but would shrink pretty much normal every night.  I still made lots of urine but labs show the quality was failing.

Fast forward a few years, my legs stopped going down at night and began leaking terribly every day, soaking my socks and shoes.  Repeated infections at the leak sites, a few times so bad a whole leg would turn red and high temp would land me in the hospital.

Kidneys still at 20% I asked my Neph if Dialysis would stop this leg swelling and resulting leaks/infections.  Dr said "yes".  I told him to sign me up and let's get started.  PD cath put in shortly after.  Within the first 2 weeks on PD my legs shrunk to normal size.  I lost 40 pounds of water.

And I wasn't exhausted any longer.  I was still somewhat 'tired', but no more of the Soul dragging exhaustion.

So I have to ask as I don't remember.

Are you already ON Dialysis or are you putting it off in hopes of a Tx?

Most all of us will tell you that how you feel is your best indicator in deciding when to start treatments.  Labs alone can vary among patients but feelings are individaul, just as we are all individuals.

If you 'feel' very poorly then perhaps it is getting time for treatment.  And if you ARE already on Dialysis then it may be time to see your Neph and discus the amount of treatment, increasing time, changing your 'script' somewhat to improve your condition.

Way too much said.

Take Care,

Charlie B53













Sp/edit Mod Cas

[Naynay99]

Hey Charlie and Cas. Thanx for replying
No I am not yet on dialysis.  I’m hoping for a preemptive transplant. My Last labs say gfr around 17% and holding steady.  I don’t think I am bad off enough to need to start dialysis yet. 

 I also have this irrational idea in my head that my D start date signifies a ticking time bomb with an expiration date and am not ready to start that clock yet.  Dumb I know as this site is evidence that ppl can live a lot longer than statistics would have you believe. I do think when I feel more bad than good I will know it’s time to start tho.  Or i think I will anyhow.

I know tiredness is an effect of loss of kidney function bc of not making enough hormones to stimulate RBC production.  I have been on Procrit for years now, but I’m not sure what else causes the exhaustion besides Anemia?
My nephrologist isn’t accounting my memory stuff to the kidney but who knows.

I am trying to not overstress with work stuff and just worry about doing satisfactory work not being teacher of the year, but it’s difficult to fight that urge to go above and beyond. 

The heat is supposed to break tomorrow so hopefully that helps me feel less tired.  My coworker friend asked if i considered going to admin to request a AC room for health reasons, but i don’t want to be that person.  And i don’t want to be moved to a non science lab room. 

Plus I haven’t even disclosed anything to my supervisor or principal or anything yet.  My hope was to say nothing until I am headed to the hospital for a transplant which is possibly.delusional. 

Anyway thanks for the feedback and alllowing me to whine a bit. 
Take it easy.
R

. 

[Charlie B53]

I started while at 20% function.

I wasn't  ''physically' sick as I didn't have neasea, vomiting, etc.  I was exhausted and my legs had been swelling and LEAKING so badly every day, and the resulting leg infections threatened to kill me a couple of times.

But I never considered myself 'sick'.

I do FEEL much better since starting treatments.

I don't consider Dialysis any type of 'ticking time bomb'.  I've no doubt I could easily do this another 40 years as long as I keep my diet and fluids as well managed as I am doing now.

But I do recommend you take your Principal and Administrator aside and let them know that you are hoping for a transplant and may well have to begin Dialysis.  If you got the call tomorrow it would sure place a strain on them to find a replacement virtually over-night, or less.  If you were in their position and one of YOUR employees were in your place, I am sure you would appreciate the heads up.

You are following a 'Renal Friendly' diet and fluid control already, correct?   This will ease the workload on your already burdened kidneys, and could help somewhat with your exhaustion.


Take Care,

Charlie B53

[Naynay99]

Hey. Yeah I’m following a renal diet. 

[Naynay99]

Hey.  Sry. Using my phone- Hit send by accident. 
Yeah I’m following a predialysis renal diet that my kidney dietician came up with.  Restricting amounts of protein, phosphorus, potassium, and sodium., etc.  My blood work has been pretty stable since I started the diet this past spring.   

And I feel like my transplanted kidney isnt done fighting yet.  I am at 17% and that’s with only 1 kidney at work.  Plus I’m working hard to get my kidney to at least reach it’s 30th anniversary, which is in July.   (I know it’s dumb but it feels important to get every last nephron worth out of this kidney-it has been mine a lot longer than it belonged to its original owner). 

I want to start working out at the pool at the Y.  I’m sure if I can somehow drag my tired asss to the gym it would give me more energy in the long run. 

Idk about disclosing at work yet, I fear it could blow up in my face.  Maybe I just don’t want to tell them bc that would make it feel too real. Idk.  Will have to think about it some more. 

Anyway, thanks for sharing your story.  Take it easy.