How patients generally feel after a while on dialysis

[rfranzi]

Maybe there is no "general" answer to this question, but - I am curious about this. In a paragraph or less (can be more if you want), can you describe how you felt after 1, 3, 6, 12 months of dialysis? Do you get "stabilzed" once they figure out your dry weight, etc......? Or is it still more like a roller coaster, up and down?

How much better would you say dialysis made you feel? (I know how bad I felt right before dialysis, too bad to even talk about, I guess I felt like I was dying - I had to do it on an emergency basis....after two months, I would have called the difference a minor miracle, I literally felt brought back to life, yet I was still a semblance of my old self. I am sure some of it is just aging (turning 53), but is there anybody who ever felt 100% like their healthy selves?

My suspicion is that it might be 60-85% or something like that, but I am not sure I will ever be like my old self. My energy levels, the recurring nausea, even mild, sure makes it hard to try to plan anything, not knowing if you'll be up for it.

Anyways, just wondered what other's general experience has been. Thanks much and all the best to all of you. May technology progress so that our lives can really improve!

[MommyChick]

Hello Rfranzi, 

I'll try & keep it short & sweet...
In 2005 when my transplanted kidney started to fail, I was still feeling good. I didn't realize it was failing other then getting the monthly blood work done. The doctors tried everything to save it & it seemed like the more they tried the sicker I got. My BP got so high one night that before I could let my parents know something wasn't right ( was living at home then) I went into seizures. Due to the seizures the doctors had to put me into a medicated coma for 10 days to control how my body was reacting to everything. Later that month they removed my transplanted kidney & I had to start dialysis right away. So I didn't have a choice to ease into things. For the first few months I lost so much weight. I was down to about 100 lbs & no matter how much I wanted to eat nothing stayed in me. I did feel like I was dying at that time. I figured my body was still going into shock
from it all.
August will be 7 yrs now that I'm on dialysis awaiting a kidney. Over the years my body has grown used to it & stabilized.. so I think. I may be tired some days but I still have energy to live a normal life for the most part. The only thing that has really changed is my diet/fluid intake & having to do dialysis 3 times a week. I still have off days at times, but I personally have been dealing ok with dialysis, everyone is different though.
I am sure if I finally get another kidney I will then realize how crappy I actually felt on dialysis , but I have been on dialysis so long I kind of forget how I felt when I was healthy.. I do notice if I'm not feeling well dialysis will always makes me feel better!

~ Marna

[jbeany]

The first month or two was pretty miserable.  I was sick and miserable.  It stabilized after that, and for the most part, it got pretty routine, so it wasn't so hard either physically or emotionally.  After a year, I switched to home hemo on NxStage and that was a huge improvement for me.  D stopped being a horrible appointment I had to attend or else, and started being a rather boring chore I had to do at home, like laundry.  I also felt MUCH better on the NxStage, with more energy and more freedom to eat the stuff I wanted.

As for feeling 100% - nope, never.  Even a transplant hasn't done that.  I'd put in-center hemo at about a 65%, NxStage at 75%, and my transplant, once I got through my complications - about 90%.  (The complications were about a 25% for a long time, but that's another story!)

But then again - my last 100% was nearly two decades ago, so maybe the 10% drop with my transplant is partly from getting older.   

[MaryD]

I'm on PD and I feel that I'm probably 75% of my former self.  However, I am also almost 70 and had lymphoma three years ago, so I can't figure how much of my downgrade is due to old age and post chemo.  I do feel much better on dialysis than off it.

[amanda100wilson]

I have Had ESRD for  23 years so I habsolutely no idea what normal feels like anyway. Even when I had a functioning transplant I know that I didn't have the same energy levels as  other people my age, but I felt 'normal'.  After the transplant failed, I felt 'normal' but obviously not 100%.  When my residual function disappeared, Imostcertainly didn't feel 'normal'.  I felt that I was about twenty years old, than my then 49 year old self.  I have been on NxStage since last October and now feel much better but still recognise that I am more limited in what I can do, compared to other people my age.  So although I have found a new 'normal', I know that I am not when it comes to energy levels.  So I don't think that it is particularly helpful to try and describe it in percentage terms, unless like yourself, you have been relatively recently diagnosed, and for some people they also don't have the emergency aspect of it when starting dialysis, so it is less of an abrupt change once they are on dialysis.  Furthermore, everyone is different.  So who knows, even in the absence of ESRD maybe I wouldbe a person with low energy levels anyway.

[mcclane]

I was on home hemo for about 9 months.  The first thing I noticed after the first few rounds of hemo was my puffiness went down considerably, so did my weight.

I felt pretty decent, my appetite was almost restored (but still sucks that you have to remain on a somewhat restricted diet), and I had a decent amount of energy - unfortunately being hooked up on the machine for hours sapped most of that energy away, meaning that instead of doing other things I was constantly playing catchup on my home duties.

I also noticed that before starting home hemo, I never sweat at all, regardless of how hot the temps became.  But I sure got the chills easily.  Once I started home hemo, I began to sweat a little more. 

I also noticed that I virtually stopped peeing on hemo too.

[gotmoose]

Having been reading this forum off and on for the last few years. It's nice to see something posative said here. Yes I know this is a place to rant about dialysis, and the majority of what I've read here is negative. I understand each person handles dialysis differently. Im currently facing that in the near future . I'm stage 3 with my last GFR being 30. Seeing people post here that they are doing ok on dialysis and some actualy feel pretty good gives me some hope for my future on dialysis.

[ChrisEtc]

I've found the dry weight thing to be completely bogus for several reasons.  My weight fluctuates up and down depending on what I eat, how much I exercise, the kinds of foods I eat, how much I sweat,  how much fluid I drink and how many days I have between treatments and what types of clothes or shoes I wear.  I always make t he choice how much fluid we take off in treatment because I'm the only one that knows all of those things bout myself from day to day.  Nobody else could possibly know so that decision always stays with me.  I think you'll find the more you become involved with the decisions surrounding your care the better it will go.  Only you know how your body feels and how it responds to treatment.

[bleija]

my whole hemo experience was miserable. they never could figure out my dry weight, in  the same session my bp would sky rocket and bottom out. i dealt with pleurisy virtually the whole <after going to the ER about 4 time within 2 months, i felt like some kind of addict to keep going there so i went to my primary and he gave me an NSAID, since the prednisone wouldnt work, i weaned myself off of that bc my nurses freaked about it, but it was the only thing that gave me any relief other than pain killers i had from leftover from surgeries, so i just accepted the pain> it was weird bc i would cramp up like they were pulling too much off. i never let them take more than 1 k  bc i wouldnt be able to stand afterward. i had unexplained fevers too. they did cultures and everything nothing turned up. my labs were all crap, nothing was where it needed to be. oh and far as appetite, mine was nonexistent. i would eat absolutely nothing all day, then usually by about 9 or 10 at night i would force, and yes i say force myself to eat something. but the thought of food made nauseous. at first i was really depressed about being on hemo. i would leave with 10 mins extra bc i would cry the whole way there. i am not an emotional person, but i was sooooo emotional on hemo. 10 mins was to pull myself together before i walked in.
based on my experience with hemo, i will NEVER do in center hemo again. I am 22 years old, and if that means i die, thats how bad it was for me.

[Whamo]

I actually felt really good after a couple of months on dialysis compared to how I felt before I started hemo.  Then the fistula surgeries started, and those threw a wrench into everything.  Just as I'd adapted to my catheter they cut up my arm.  Recovering from surgery set me back.  Then the fistula failed after a couple of months.  And now I've had two more surgeries for a new fistula, and I have a scar that stretches from my elbow to my armpit.  My surgeon says we'll try it in two weeks.  But that third surgery messed up my prostrate somehow, and now I have a catheter on my penis.  It's disgusting.  It leaks sometimes.  It gets looses and tugs on my penis.  It hurts when it does that.  It makes it harder to exercise.  They gave me a drug, Jalyn, and one of the side effects is painful erections.  I haven't had that yet, but no way do I want one with a catheter on me.  I haven't been on dialysis for a full year yet, and I fully get it when I read someone wants to just stop and die.  I hang on, though, because the good days make it worthwhile. 

[smokinbeaver]

My husband brokenpole has been doing in center hemodialysis since May 24th. He still has the chest catheter because its taking a long time for the fistula in his arm to mature and its been 2 or 3 months. He felt bad at first because his iron was so low. He had cellulitis develope in his legs and was sick from that as well. Finally they figured out what his dry weight in, gave him a couple blood transfusions, and blood during dialysis. He was on strong IV antibiotics in the hosp. and at dialysis, and its all working now. His protein and iron is in the normal range, the severe edema in his calves has gone down quite a bit, and he hasn't been on any antibiotics for a month. He is feeling much better now and his spirits are back up closer to normal. The Fresenius center he goes to seems to be a good one which helps a lot. And during all this he had a big work load at the Nuclear Plant where he works (normal outage and refueling) so lots of stress there. We are also going through trying to get custody of our grandson who has been in foster care in Mass. for over a yr. We had to go to parenting classes, home study, background checks and investigations and having to go to parent support groups all during the kidney failure and beginning of dialysis at the same time. We've been approved to be foster parents for our grandson here in Miss. even though Jon is on dialysis. It could be months before Mass. approves us as well and do send our grandson down here, but its looking a little better then it did before. We have our grandson's Mom living with us too and she has been having severe asthma attacks during all this as well. The stress level in this household is very high, but it is looking like my husband is improving with dialysis. The biggest help is he has been able to keep his job as a training and instructer at the Nuclear Plant so far. He can work his hrs around dialysis 3 times a week and still get his work done. We are feeling a bit more positive now.

Sharon

[KAF454]

It took about 5 months on PD before I started feeling good. We got the blood chemistry right with epo and Venofer and I forced myself to get back in the gym at least 3 times a week to get my weight under control. Honestly, a huge part of it involved me pulling my head out of my tail and accepting this process keeps me alive. It's not a burden... it's a miracle. I fought it in the beginning but now I go to sleep secure in the knowledge I will wake up in the morning - feeling great and about 4 pounds lighter. I'm 58 and have always been a morning person but now it's amazing how good I feel when I wake up with my system freshly cleaned of the toxins.

[raidym]

Month 1-3 was hell. I felt like crap and swore it was sucking the life and soul out of me and thats when I felt like giving up the most. 3-6 months It started to get slightly better at this stage as they had my dry weight sorted and my iron levels were stablising. I could see a little light at the end of the tunnel. Around the 9 month mark I changed clinics and the time went from early morning to late evening. And thats when the change happened and I started to feel normal now I do still feel the same afterward very tired cold and shakey. But now I can go home and sleep it off 'cause it's after midnight when I get home. The next day I can honest say I feel good and alot of the time like I did before it all started. I can actually see how good dialysis is for as much as I hate to admit it...

[Joe]

I'm with KAF454 in that I do PD, and after a year I feel pretty good finally. I'm a real fan of PD, love the freedom it gives me

[bleija]

i am a major fan of PD, when i learned about all my issues 3 years ago, i went with PD bc i worked in a hospital and the blood freaked me out honestly, and i felt i could hide it all better if i was home. plus it gave me my days. At the time i was working full time as a patient transporter, very physically demanding, and i was going to school full time. and i trransitioned onto pd very well it never slowed me down. eventually as things progresssed i talked to my boss about cutting my hours down from 40,to 32. i was just too exhausted to do anything when i was at home, my ppoor puppy suffered, bc i was so tired i would forget to take him out or forget to feed him, i was such a bad mommmy, but he got smart and would remind me, he would go to the door and bark one time if he had to go<we lived in an apartment and he is a big boy, so i discouraged barking and whining and such> or he would sit in front of the pantry door if i hadnt fed him. in a way i think he knew something was up but he was always there at my feet to give me kisses.
the time when i went on hemo, i wanted to go back to work i wanted to be able to do things, but i couldnt i woke up most days with some new excrutiating pain. i felt like the drs were thinking i was an addict trying to score. i remember one day, i pulled over on the side of the road, bc i couldnt breathe and i couldnt see to drive. the call to my husband i felt so bad bc he had to work that night and i called and woke him up. i couldnt stand up for periods of time without getting dizzy or feeling like i was gonna pass out, a trip to walmart was like a marathon. it was hardest for me to admit i couldnt keep up with my friends and everybody and being so young they dnt know. but i will say i have some great friends taht stuck with me through everything

[malaka]

My wife was ready to kill me about 6 weeks in hemodialysis as I'd lost 35+ pounds without exercise or calorie-limited diet!  Seriously, I was pretty bloated, sick, and tired when I started.  Within a few weeks I started to feel better.

And, I've just experienced something that tells me why.  I'm on a MWF schedule.  Mondays are always the worst post-dialysis.  Two days without it and more water gets removed on Monday. 

I went on vacation last week and the place where I could go was a TThS place.  So I ended up going from Friday to Tuesday without dialysis.  While I felt o.k. going into it, I was tired as I've been in a long time when I left. 

[Stacy Without An E]

I spent the first six months to a year of Dialysis throwing up continuously.  My weight plummeted to 110 pounds & I was ridiculously skinny.  Of course, this was when our radio station decided to take staff photos for the website (just my luck.)

After the first year, I stabilized, found my correct dry weight, returned to normal weight, and actually felt pretty good for the next few years.

Presently I just blew past year eight and the Dialysis is starting to take its toll.  Even though I still manage to do cardio at the gym to keep my strength up, I can rarely do any weight because the pain is too great.  In fact, I'm starting to walk with a limp because my legs hurt so much, continuously, without mercy, all the time.  Climbing the one flight of stairs to get into work is excruciating.  Thank goodness for handrails.

I worry that if I don't receive a kidney soon, I'm going to be in pain 24 hours a day.  That's a frightful notion to consider.

[ChrisEtc]

I spent the first six months to a year of Dialysis throwing up continuously.  My weight plummeted to 110 pounds & I was ridiculously skinny.  Of course, this was when our radio station decided to take staff photos for the website (just my luck.)

After the first year, I stabilized, found my correct dry weight, returned to normal weight, and actually felt pretty good for the next few years.

Presently I just blew past year eight and the Dialysis is starting to take its toll.  Even though I still manage to do cardio at the gym to keep my strength up, I can rarely do any weight because the pain is too great.  In fact, I'm starting to walk with a limp because my legs hurt so much, continuously, without mercy, all the time.  Climbing the one flight of stairs to get into work is excruciating.  Thank goodness for handrails.

I worry that if I don't receive a kidney soon, I'm going to be in pain 24 hours a day.  That's a frightful notion to consider.

Pain from what exactly?  Sore muscles?

[amanda58]

I was on PD for a year, and although6 it was a every night commitment, I felt great. I can say that now because after having both kidneys removed, and having no choice but to start Hemo, I know how feeling lousy is. I went from 4 hour treatments to Nocturnal just recently. The 4 hour treatment was so long and hard on my body...that's why they recommended Nocturnal(in center) I still have side effects like Nausea,vomiting,headaches, chills, hot flashes, restless leg, and anxiety with insomnia. I literally stay awake when I'm at D, all night long. it becomes so difficult just to stay there, one night I asked them to unhook me, I just couldn't bear it. I have a live donor, but The final crossmatch revealed an antibody in my blood, and the doc said we can't take a risk of rejecting, so no surgery for now. How long do you think it actually takes to start feeling better on Hemo? Does this vary a lot from person to person? I don't want to be on it for a long time, but I also don't want to receive a perfectly good kidney just for it to fail.

[sullidog]

I was such bad shape I had to have emergency dialysis and felt great after the first treatment!

[Jayhef]

When my transplant started failing last year, the doctor compromised with me and let me dialyze just twice a week. It was awful. I would get horrible headaches and start vomiting uncontrollably two hours into the treatments. Afterward I couldn't do anything but crawl into bed. My feet, hands and tongue (of all the weird places) would be numb or tingly for the rest of the day. I would spend the next day recovering and then go back to what felt like destroying my body all over again. After 6-8 months of that my doctor insisted I switch to 3 days a week. I really didn't think I could do it. They also started using 16 gauge needles instead of 15, and stopped raising my flow above 350. Also, I started walking long distances and working out at home.
Any of these could be contributing factors, but dialysis suddenly got a lot easier. I have just as much as energy now as I did with my transplant, and I'm in better condition physically. Personally, I've found that it helps to focus on the rest of your body - the aspects of your health that you can control. I've never heard of anyone who didn't start feeling better after a few months of adjusting. (although this is a big community of people with varied experiences, so someone correct me if I'm wrong) It sounds trite, but I still want to tell you to hang in there. You might just need some time to adapt.