when will I get energy

[Beachgirl32]

I have been so tired I have to push myself to do things . I know probably cause I don’t get much sleep doing dialysis but I thought it was suppose to give me energy I know I’m kind of new but been on the Machince at least a month . When did any if you start getting more energy in pd diaylis ? I heard differnt thing a few months six months ect .

[horsie63]

Are your labs good…protein, hemoglobin, red blood cells.

Of course not getting enough sleep doesn’t help.

Are you taking a beta blocker? They can make it hard to do stuff.

[Beachgirl32 in reply to horsie63]

so are you having more energy now? Yes my red blood cells and hemoglobin are low I am getting iron infusion for that but I think I can just get it twice a month .Are you sleeping through the night on the machine? Yeah my two to three hour a sleep I don’t think is enough.

[horsie63 in reply to Beachgirl32]

First thing in the morning, no I'm basically a zombie. Most nights yes I sleep but I had a bout of constipation and had some drain pain the night before last. With the cat I worry about tube messing as there's 50 miles of the crap. How is it they can get so tangled?

I've had one iron infusion and two shots of the EPO stuff. I have been trying to eat more protein but some days I have no appetite. That can cause no energy too so you have to eat.

[Beachgirl32 in reply to horsie63]

yeah I’m trying to eat better. Yeah I bet your cat wil have a field day with those tubes . I pretty lucky with the tubes I untangle them at the beginning and I never have a problem with tangling them . What is the epo stuff? I don’t know if I had that .

[horsie63 in reply to Beachgirl32]

It's something called Mircera which is supposed to stimulate bone marrow to produce more red blood cells which the kidneys are supposed to do. It's a hormone that's normally produced by healthy kidneys. I can never remember it's name.

Of course there's all sorts of reasons for tiredness. Lack of sleep is a factor to be sure. Have your B12 levels and folate checked. I know in my case since I'm not eating right I'm probably lacking in some vitamins and minerals. It could be a medication you are taking.

Your PD nurse sounds like a great person to work with and your nephrologist to get some answers.

[bumblebee_tuna]

Have you done an adequacy test yet? Usually tiredness is a sign of not getting enough dialysis. But if you are only getting 3 hours of sleep, that doesn't help.

[Beachgirl32 in reply to bumblebee_tuna]

yes I had one it was 2.2 having another one next week . I’m also caretaker for my husband do some days I know I’m doing to much today was one of those days even though I had help taking him to the doctor And my neice took him to the store so he could get out and for me to have a break . But I had to put all the groceries up. I had to carry groceries to my back door cause they are working on my porch out front . After seeing me walk back the third time the worker working on my porch said let me put them on the front step instead of you keep walking back. Then he was so sweet he said let me bring them in. My niece got the big things in. But I had to put them up. Then I had to run my husband urine culture to the lab of course I couldn’t drop it off . The doctor forgot to put his first name on lab sheet so I had to go back to doctor I knew they would just add his name if I had a pen on me I would have did it. The doctor office couldn’t believe they just wouldn’t add the name . I had to sit at the lab to wait to register him. Did that . I had to pick up his meds oh one not done yet so walk around 15 minutes got that. I had to come home use the food sealer to vacuum the chicken breast we got earlier . I just set up my dialysis at 5 cause I have no energy this is like a typical day for me on two to three hour sleep . The third and fourth drain always wake me up even if I dose off. And the fill been hurting my back I know my doctor going to tell me I need some sleep but I wish I didn’t feel everything the machince does . I might start going it right after supper so it will be done like at two right now. Have to be up early cause of my contractor us here like 8 and I have to open the door for him so he can use his extension cord cause I have no outside outlet . Ok I’m sorry I’m rambling I do that when I’m tired.

[bumblebee_tuna in reply to Beachgirl32]

I think you need to get into a routine that makes sense, maybe you can take a power-nap during the day? at least until things get better. One month is not a lot of time, you should probably give it some more time - it does get easier. I would also say this - you need to advocate for yourself and let your team know if things are not working. I think dialysis centers tend to assume that most people want to be on the cycler over night and don't necessarily offer other modalities. You could go back to CAPD like I did, there is home-hemo as an option, etc. Maybe you can go to a single exchange at night if you are low, or low-average transport?

[Beachgirl32 in reply to bumblebee_tuna]

I have no idea what type of transport I am , I know Horsie said they did a pet test on her I never had one. Dialysis wasn’t so bad last night I did it earlier but the cramps in my legs and feet were . I don’t know if I need more water through the day I was so busy yesterday I only drank one bottle of water. I know my potassium is low the dietician told me to eat more potassium maybe I’m still not eating enough I have a cantaloupe I’m going to cut up this morning . They have me on two 80 mg lasix a day I think that delete so much out of me I’m also taking a potassium pill .

I ask before it I had to do dialysis every day and they said yes . I did feel better when I did it for six hours you wouldn’t think the one more hour would make a differnt maybe they will let me go back to 5 and do a manual that something to ask.

[bumblebee_tuna in reply to Beachgirl32]

are you cramping on 1.5% or 2.5%, seems like you could use a lower concentration.

[Beachgirl32 in reply to bumblebee_tuna]

it 2.5 I’m going to try 1.5 tonight I think

[horsie63 in reply to Beachgirl32]

Yeah after all of that I would be exhausted.

[bumblebee_tuna]

Also, you might want to ask your team if you can get a day off once a week.

[Hidden]

Hi Beachgirl! I was on PD dialysis for a couple of months before I felt better (versus lying on the sofa most of the day before starting PD!). I was on either iron supplements or infusions. I never really got a great sleep while on PD. I would get leg cramps, which could be quite painful and annoying. So, make sure you are getting adequate water and your electrolytes are within range. Also, play with the settings on your machine, such as the volume of the alarm and screen lighting if your sensitive to sound and light. The factory settings were a bit too much for me. It's been almost 8 months since I had a kidney transplant and it seems that sleep remains a hit or miss prospect, although I do think I get about 4-5 hours of rest overall. I do find that melatonin sometimes helps. Best of luck findingyour happy medium!!!

[Beachgirl32 in reply to Hidden]

the setting are set by dialysis center I can only do so much

Praying I will be like you get a transplant soon .

[Hidden in reply to Beachgirl32]

I hope you do, too! Yes, most of the settings are established by the dialysis team, which shouldn't be played with. But, you can play with the screen brightness and volume of the alarms. Sorry if I caused any confusion!

[RhenDutchess123]

Check your Magnesium level...I take a supplement about 1 hour before bed...sure helps with leg cramps and sleep very well. .

Dialysis does not work immediately...it took years for our kidney function to decline and it will take a bit for your body to remove the toxins built up...

I know you are tired , but a little exercise will help move toxins out of your body...Evan if its only a short walk a day around your house...increasing your walk each day.....it all helps

[weetziegrl]

It took me about 3 months of PD on the machine before I started feeling like myself again. My protein intake needs work because I have a terrible time with nausea and vomiting, but I'm working on it. I just got new sneakers for walking and took a walk yesterday, and that helped a lot with both energy and lifting my mood. I have many days where I am just exhausted but I tell myself that my body is doing its best, and think back to how I felt right before I started dialysis. You will start to adjust, as will your body. You got some great advice from the others here. Try to go easy on yourself and reach out anytime you need to.

[Beachgirl32 in reply to weetziegrl]

thank you before I started dialysis I actually felt great . It good to hear other people are exhausted cause everyone keep telling me you should have so much energy now since you are on dialysis these are friends who think they know about dialysis

I hope my body will adjust hood luck with your walking

[Frankie24]

I had energy right from the start !I felt great for the two and a half years I was on it. Was able to work , exercise do all my errands etc. Near the end of pd when it stopped working and I was no longer getting clearance I felt horrible. Couldn’t get out of bed or out of my own way . I slept while on the cycler. Check with your PD nurse in regards to what is going on. I hope you feel better soon. I am back on hemodialysis and hating every moment of it. Give it time Be patient. It is much better than in center hemodialysis. If you have someone who could be your partner which I don’t my understanding is that home hemodialysis is a good option.

[Beachgirl32 in reply to Frankie24]

good you have

Some energy sorry it stop working for you.

WhAt we’re your signs that you it stop working?

[Frankie24 in reply to Beachgirl32]

I became very pale, extremely tired. Unable to get out of bed or function. Could not eat. Everything made me sick. They had increased the number of bags and strengths to the most it could be and I just wasn’t getting any clearance. It was pretty awful I ended up in the hospital for an extended time. The worst part was having to go back on hemodialysis !! I hope everything works out well for you. I need to reply to one of your comments. Like you, I still felt fine before I first started dialysis. Now I am tired all the time. People tell me the same, that I should feel better being on dialysis. The dialysis nurse where I go has been doing it for 18 years. She said most patients complain of fatigue and not feeling well even on their off days. No one else is in our bodies. They don’t know how we feel. As someone else mentioned, go easy on yourself. What you are going through is hard enough.

[Beachgirl32 in reply to Frankie24]

Frankie sorry what you went through.How long were you on pd dialysis?Sorry you had to go back on hemo dialysis sometimes I wonder if it would be easier but reading post like your doesn’t sound like it easier .I hope you will start feeling some better soon . Yes dialysis isn’t no picnic my sister doesn’t understand how I’m so tired all the time and why I can’t do the things I use to it like you said no body else is walking in our bodies so it is hard for them . When I had 8 and 9 percent kidney function I was still walking two miles a day did all my own housework . Did my yard work. Went shopping not being tired. Now any of that I’m whipped no way I can walk two miles .

Are you on the transplant list?

[horsie63]

check with your team about your sodium levels…when I did ultra runs I heard of people cramping bad due to low sodium..they would sweat it out and took something called S-caps. Basically salt tabs or the old standby- pickle juice.. But definitely check first.

[Beachgirl32 in reply to horsie63]

thanks last night I change my solution to One yellow one green instead of two green . I also took some pedialite so I don’t know which one that help but I slept some I slept through last drain that has never happen so I must be low in my electrolytes

My blood pressure was low so it was ok for me to go to one yellow bag. But I know my nurse will tell me two green bags I need to Pass my accuracy test but I will try the two green tonight and the pedalite my doctor before said I could take that at certain times not all the times

[horsie63 in reply to Beachgirl32]

Glad that worked for last night. I think there might be another drink sort of like pedialyte, I'll see if I can find it. Another thing ultra's have is especially on cold nights is Ramen as it's warm, filling, has liquid and has salt. I hate pickle juice but did love when they had Ramen. Ultrarun aid stations are nothing but a buffet for runners. Be careful though you don't want too much salt. I find that when I get cramps in my feet I eat a few potato chips and that works for me.

[Beachgirl32 in reply to horsie63]

thank you . As people with ckd we are always told to watch our salt. But I never thought of dialysis could take so much away to ( differnt electrolytes) but I guess it all a learning game. May have to keep a salty snack in my night stand😜

[horsie63 in reply to Beachgirl32]

Yep I know. Same thing with potassium and protein. After watching them like a hawk for so long it's weird now to eat those things. But I do watch me labs to, when I can get them.

Hey have you heard from Ron?

[Beachgirl32 in reply to horsie63]

no I have not heard from Ron I hope him and his dad are ok .

[Imaanforever]

Hi, before dialysis, I felt like crap. My bones and muscle hurt and ache so bad that any little movement is totrue. Going up the stairs, coming down, getting in and out of bed is torture. I couldn’t go in my regular walk as that was extra torture. I started dialysis last year July and I only started feeling better in December/January. Now I’m back to my old self and started going in walks again.

However, on some random days, I just feel extra tired, when this happens, I spend a lot of time sleeping ensure I take my vitamins prescribed by my PD unit and eat well. Then I’m back to my bubbly self.

You will be fine soon, take it a day at a time. All the best.

[Beachgirl32 in reply to Imaanforever]

thank you glad you are doing well. Well I hope I start feeling better like you did. I didn’t feel bad until I started dialysis so that why this is so hard for me. Hopefully it will just take some more months for by body to handle it I’m a true believer that god is in control so I just need to go on this journey he has plan for me .

[Imaanforever in reply to Beachgirl32]

I’m happy you believe in God even at this challenging times. God is definitely in control, I don’t know how I would have still been here without God.

He sees you and knows your struggles, He’s got you xoxo