always feeling tired

[skinnacat]

does anyone else feel tired all the time?? i know the docs say its because of anemia but i am
not anemic. i will have some energy in the morning but by late afternoon i don't feel like doin
a thing. and its not sleepy tired but more lazy tired....just dont have that energy i had before
i started dialysis. even in stage 5 renal failure i think i had more energy than i do now. it really
irritates me and carrying all this fluid around doesn't really help i don't think. just one of the many
things that drives me crazy about this new life of mine!!
 

[cassandra]

Hi skinnacat I have periods I feel like that (after D since '98) but I saw you're on D for a few months now so it's also poss that you're suffering a bit from PTSD and that you're a bit down? And the extra liquid can make you a bit 'uncomfortable' too, like everything is just so much harder to begin with?
Maybe just start with a few things a day that you really want to do?

Love, and luck, Cas

[skinnacat]

thanks Cas for responding and i know i have not been doing this for very long and
ya the 5 pounds in the tummy can make it hard to move around like i used too.
before this i had a very fast paced job that became very hard to do twards the end
because it was so physically challenging and there's no way i can do it now scince
i started the dialysis. just to much work and you are expected to move really fast which
i can no longer do and where would i get the energy. i remember you said that you have been
doing this a very long time and that gives me hope to know its possible that i have some more
of my life to live...just like Kristina said i get pretty down in the dumps too about all this
some days i question exactly what i am doing this for and then i remember my husband and boys
still need me even if i am a little sick.   oh and my stubborn cat too!! 

[cassandra]

   


I'm glad your feeling a bit better

       

[Charlie B53]

I've been so tired for so long that I don't remember what it is like to have enough energy to get anything done.

My team started me on an Iron supplement long ago.  I don't remember what labs indicated this, but it never really seemed to make any difference in how I felt.

About a year ago I was complaining of the constant exhaustion and my Neph and Nurse decided to try an Iron IV.  I was ready to try anything.  $ or 5 of those ittly bitty bottles of what looked like ink into a bag of IV fluid, a very slow drip for the first 15 minutes to make sure I didn't have a bad reaction, then opened it up a bit.  Took about 45 minutes and I went on my way.

Later that afternoon I noticed I was wore out and in bed for my daily nap.  Huh?  Same the next day.  And the next.  I was quite surprised,  I was getting up and about.  This lasted for a few weeks.  Then I was back to laying around, toast all the time.  I've repeatedly asked if I could have it again.  They refuse, saying my labs are fine and I do not need it.

[jeannea]

They're refusing because too much iron is dangerous also. They can test your ferritin and transferritin to see when you can have another infusion.

[Simon Dog]

They're refusing because too much iron is dangerous also. They can test your ferritin and transferritin to see when you can have another infusion.

Google for papers on the thrombolytic side effects of EPO, and the relation to HGB levels.

[kristina]

Hello Simon,
according to some medical papers published on google
the side-effects of Epo can be anything... just about anything...
... problem is: how could we possibly figure out,
that our symptoms could be one of the possible side-effects
and not something else...?
Thanks from Kristina.

[Simon Dog]

I was referring specifically to side effects like blood clots, heart attack and stroke when EPO is used to boost HGB above 12.    This is one of the reasons nephs don't try to get our HGB back to a "normal person normal", and also why athletes who use EPO for such purpose are playing Russian roulette with a needle.    The cost of EPO is of course another factor.

As to how you figure it out - ask your doc.  (S)he gets paid to figure this sort of thing out.

[kristina]

Thank you Simon for the helpful information.
I have asked the doctors and they are in the process to figure it out...
Thanks again from Kristina.

[kitkatz]

Unfortunately, get used to it.  I have been tired, and there was TIRED.  Dialysis will take it out of you.

Solution: Take care of yourself. Rest when and if you need it.  Do fun things.  Say no to people when you need to.
You know your limits.

[Riki]

I know how you're feeling.  For the last week or so, I haven't had the energy to get out of my own way.  I have a theory on why that is.  My bp has been really low for a few months now.  The nurses seem afraid to take fluid off me.  They think they are drying me out.  Since I haven't been having any of the symptoms that I normally do if they dry me out, I think it's just me being weird.  My bp tends to go in stages where it's extremely high and needs to be controlled, then suddenly it drops to a point where I think it's funny that I'm actually conscious.  I've done this for as long as I can remember.  I think that because of the low bp, the nurses kind of freak, and are refusing to take off the fluid that I want off, so I'm carrying extra.  I know that today, I've had no energy at all, and I've had a dry cough.  It has to be related.