Energy Level?

[TynyOne]

Hi IHD Family!

How is each and everyone of you today?  I hope you all had a wonderful 4th of July.   I have question for those who can give me some advise if you have had experience with this problem.  I have noticed that my energy level is just gone "kapoot".   I want to sleep all the time and some mornings it takes all I have to get up in the mornings to get to work.  Please do not advise me to consider early medical retirement because at this time, that is NOT an option I want to choose.   So, has anyone, had experienced, the energy level going down to nearly nothing?  If so, please let me know what you did about or what did your doctors do about it?  Thank you in advance for your help.   

Tammy from Alabameeeeee

[okarol]

Hi Tammy,

Sorry to hear about the lack of energy, my daughter was so exhausted, she couldn't even do things she LOVED! Here's a similar thread: http://ihatedialysis.com/forum/index.php?topic=466.0

[keefer51]

Tammy, I have no energy at all. The only day of the week i feel good is Sunday. I think i get some kind of iron shot once in a while. But to tell you the truth i never notice it. I guess allot of mine is mental. I do sleep allot but i never get tired before 2am. I don't know how i did it when i was on dialysis before. I asked the doctor about it and he said it was because i am older now. The thought of dialysis gets me tired. Dialysis gets me tired. I know before i still peed. Now i don't at all. Maybe it's all the toxins left in my body. Anyway i think they can give you a iron shot while you are on the machine.

[livecam]

I don't know much about your situation so could you tell us if you are on dialysis?  Most kidney patients will experience very low energy levels due to a lower than normal red blood cell count.  

This is anemia caused by the kidneys making less than the normal amount of a hormone that is requred for red blood cell production.  Without the right amount of red blood cells not enough oxygen gets to the cells throughout your body making you feel weak, listless, and sleepy.

Your doctor can do a blood test to make sure you have the proper amount of red blood cells and if you don't there is a medication that can be given to fix that.  

If you are anemic getting that red blood cell count up to where it should be should make you feel much better.

[skyedogrocks]

Rob has definitely seen a decline in his energy level.  Kidney disease and dialysis take a lot out of you.  As livecam said, when you are anemic, you feel even more wiped out.  Rob was feeling really tired lately and his last test results showed him anemic again.  His neph upped his Epogen dose and he is feeling much much better.  Even when he is feeling good, it's never the same as before his kidney failure.  He too works a full time job and around 2:00 is when he feels the grogginess. 

I would talk to your Neph about this. 

[LightLizard]

i know that feeling too well. the advice given is good. i would only add my experience of my hemoglobin levels dropping to a dangerously low level almost killing me, so yes, a blood test is certainly recommended!

[KICKSTART]

My energy is like a bleedin yo-yo up and down all the time ( i know i need iron , but cant have any) Even when in the past i had it , i found my energy came in cycles with no real change in routine. Best to rest/sleep if you feel like this , not much point in fighting it. My mum always made the observation ; Watch a dog , if he is feeling off he will sleep himself better!

[stauffenberg]

The real plight of renal disease is that EPO cannot be safely given in the amount required to bring the red blood cell levels up to normal, so everyone has to remain anemic and exhausted.

[TynyOne]

Thanks so much to everyone's reply about my question about energy level!!!   One person asked I was on dialysis and yes I am on dialysis; however, I have only been on it 7 months.  I did notice that alot of replies talked about being anemic but I was just told about a month ago by the head nurse that my red blood cells were at a normal level now and said, "huh?" and she said, "oh, that means you are no longer anemic which is a good thing."   I said, "Oh, OK"  LOL  Anyways, this is just making conversation when I say this.......... not really a question, but of course feel free to tell me if any of you experience the following.  I know you all probably sit in a recliner as we do at my treatment center and sometimes I recline all the way back and go to sleep and sometimes I don't; however, it seems the last 2 times I have reclined back and went to sleep, I will wake up a few minutes before my time is up and I will ask the techs/nurses to raise me back up and the minute they do, my blood pressure drops and I get that horrible, horrible faint feeling (I am sure you all know what that is like) and also I feel flushed and start dry heaving due to feeling like I am going to throw up.  They of course, come over there once I tell them I don't feel good and squeeze the saline bag to rush the fluid back into me as well as cutting my "goal" down and also cut the machine's part of pulling the fluid off and sometimes give me a Gatorade.  Like I said, I was just sharing that experience, have any of you experienced that as well?   Well, again, thanks for everyone's responses to my last question.  This is really a great group of people, one of the most family friendly like groups I have ever been on!  You all have a happy little day!

Tammy from Alabameeeeee

[okarol]

Anyways, this is just making conversation when I say this.......... not really a question, but of course feel free to tell me if any of you experience the following.  I know you all probably sit in a recliner as we do at my treatment center and sometimes I recline all the way back and go to sleep and sometimes I don't; however, it seems the last 2 times I have reclined back and went to sleep, I will wake up a few minutes before my time is up and I will ask the techs/nurses to raise me back up and the minute they do, my blood pressure drops and I get that horrible, horrible faint feeling (I am sure you all know what that is like) and also I feel flushed and start dry heaving due to feeling like I am going to throw up.  They of course, come over there once I tell them I don't feel good and squeeze the saline bag to rush the fluid back into me as well as cutting my "goal" down and also cut the machine's part of pulling the fluid off and sometimes give me a Gatorade.  Like I said, I was just sharing that experience, have any of you experienced that as well?   
Tammy from Alabameeeeee

Tammy, Are you still urinating? I ask this because it can really affect the dry weight calculation, but they never seem to mention this to patients. Jenna kept having big drops in BP and would leave the dialysis center feeling wiped out. It would affect her for the next 12 hours. On her dialysis days, at weigh-in, she would be at her dry weight, or just over, and I would have to absolutely insist that they not remove any fluid. Sometimes they would take off fluid anyway, then have to add saline to bring her weight back up. Since she was still urinating a lot, she was not retaining fluids, the default on the machine had to be manually over-ridden (which practically took an act of Congress.) It appears that she would gain a little weight (not fluid, just from normal eating and mild fluctuations, which is normal for a 118 lb. 21 year old female) and the machine just could not cope with it. The best we could do was insist on no fluid removal, then load her up with Gatorade immediately following dialysis, as that would help with her BP and electrolights. I don't know what we would have done long term, as it was a fight everytime to keep them on top of her dry weight, and to re-evaluate that number each session!
Hope this makes sense!

[Krowbar]

I think there is more at play than just a low red blood cell count that causes ESRD patients to be low on energy. When I first started dialysis my haemoglobin was 13.2 and yet I was out of energy all the time. I would sleep 12 hours and feel like sleeping 12 more!  The biggest drop in energy that I felt happened when I started taking BP medication when I was first diagnosed with kidney disease and had to lower my BP. On days that I felt great and full of energy, my BP would be on the higher side. 

After a year of dialysis, I definitely have a lot more energy now with BP in control and a haemoglobin value of 11-ish.  I think other factors like blood urea, creatnine and other toxins in our blood might be contributing to this effect as well. 

[Zach]

I think other factors like blood urea, creatnine and other toxins in our blood might be contributing to this effect as well. 

While of course everyone is different, you are absolutely correct Krowbar--quality of the dialysis treatment and the resulting blood chemistries is vital to feeling more energized.

Also, having something on the day's schedule helps motivate when fatigue tries to pull you back under the covers.      that fatigue!

 

[jbeany]

You really need to start getting copies of your labs, and learn what all the numbers mean.  It's the only way to really keep track of what's going on and the only way to really figure out the cause of your fatigue.  I was still perpetually tired even with a decent hemoglobin level until they started giving me iron.  Check to see what your ferritin levels are - if your stored iron is non-existant, it may contribute to the fatigue (mine was 6 when it's supposed to be about 60 or higher).  If you are crashing every time on dialysis, that adds to the fatigue.  If I crash, I'm usually even more tired after dialysis than usual.  Another thing that helps with that is setting your own dry weight and telling the nurse/tech how much you want off.  It's your body, and there's no one better at judging how much of the weight gain from session to session is actually fluid.  All kinds of things can change your actual dry weight - how much you ate, how often you went to the bathroom, what clothes you are wearing, and for women, what time of the month it is.

Also, don't have the nurse set you back upright until the session is completely done, and you have all your blood returned to you.  They can also check your blood pressure while you are still in that position, and give you a small dose of saline if it's low.  Preventing the crashes is a big help in avoiding the fatigue.  If you can tell when your bp is just starting to drop, you can also have them stop the fluid removal for the rest of the session or at least lower your goal.  Don't wait until it's so low that you are puking - call for them to check it as soon as you start feeling the least bit off.  You may have to stomp and yell a bit to gain control of your sessions, but don't let that stop you.  It's worth the effort to be the one in charge.

[TynyOne]

First of all, thanks for the response and yeah, I do agree, I do need to start keeping my lab reports because I have not been keeping them because the dietitian does sit down with me and tells me what is what and so far, ALL my labs have come back great!  I guess I do need to learn what the numbers mean but I am also on other meds that I failed to tell yall about that may also be contributing to my fatigue and more so, than not, it seems I am fatigued during the weekends (no treatments on the weekends) than during the week when I have treatments, kinda weird but the more I thought about this weekend, it might have a "little"  to do with me staying up later during the weekends, like for instance, Saturday nite, I stayed up until 1:00 a.m. watching movies and then slept until 3:30 p.m. the next day.  DOH!   About my BP, I am not on any BP meds anymore, I was, but not now; however, last Friday nite when I talk to the nurse, we talked about my BP dropping so low she said, we were going to watch it and I may be put back on 1 more (I was on 2) and we will see how that does.  Also, during my treatment center they keep the BP cuff on me the whole time, (you said something about having them check it) and the machine will let them know when it drops.  Also, I do let them know the minute I am sick because it is a horrible, horrible, you all know I am sure and also the nurse told me to NEVER to try and "tough it out" because she would hate to have to climb on top of me and smash my chest in over and over to get me to come back to reality, she said has had to do that before to patients and she does not like to have to do that.  (I wouldn't either)  The only complaint really that I have about my treatment center is the techs can sometimes get loud when patients are trying to sleep.     Also, I finally said something to one of them one night when they woke me up, slamming cabinet doors.    LOL  However, she and I pick on each other so I was not a "smartie" about it.     Anyways, again, I thank everyone for the replies.  Have a happy little afternoon!

Tammy

[stauffenberg]

The only use for iron in dialysis patients is to provide raw material for making the red blood cells, so if your red blood cell count is all right, then you can forget about worrying over the iron level, since the iron, in that case, has by definition done its job as well as it can.

Of the many non-hemoglobin related causes of exhaustion in dialysis patients there is 1) low blood pressure from having had too much fluid taken off and the dry weight having been underestimated; 2) the action of accumulated blood toxins on the nervous system, which damages the nerves and thus makes all your actions more difficult to perform; 3) the damage to the nervous system which makes normal, refreshing, continuous sleep impossible, so that while you may spend more time than normal in bed, you do not get the quality rest that someone with a healthy nervous sytem would get.  Since hemodialysis only provides 10 to 12% of normal renal function, the only way out of these problems is with a transplant.  Right after my transplant, even though I was just coming out of four hours of surgery and anesthesia, I felt fully alert, awake, and energetic for the first time since starting dialysis.

[kitkatz]

My hemoglobin has dropped to 9.8 this month. The iron sats are good and the ferritin results are good. They are giving me 8000 of Epogen now and I can taste it when i get it.   I called my neph and talked to his nurse.  She sounded like no big deal. I want to hear it from the doctor himself.  I hope he calls me back soon.

[angela515]

You don't have to be anemic to feel fatigued. Your labs could be great and you can still feel fatigued all the time. When I was on PD I felt fatigued all the time, but then again I didn't work... so, the lack of doing things just made me tired from boredem. I had a transplant, and got all my energy back, yet most days I could sleep all day if I didn't have my son here with me... and it's most likely due to me not working and being able to go anywhere and do things... I just sit around and watch tv and get on the computer and do stuff with my son... so I don't have much stimlation to even make me wanna be awake... lol.... so boring and lazy is my life these past few months.