That 'ol washed-out feeling

[Dannyboy]

I've been on Dialysis only about a month, typical 3 times a week in-center (starting NxStage training later this month).   

I feel so washed out after Dialysis, i just go home and crash (sessions are in the afternoon, 4 hours right now).    People have said "you'll get used to D", and the washed-out business will recede.   It is interfering greatly with trying to work even part-time (self-employed) and just general life activity (DUH!! I'm sure some of you are thinking).    Ok, yeah I know it will impact my life, just saying...

My lab results are good (sodium/phos/potass, etc), but they haven't given me my Kt/V yet (Saturday I'm promised).   I have been on a strict Renal Diet since late last year.    Not sleeping very well these days, wake up at the slightest disturbance, can't get back to sleep, feel like a zombie some days.

After Dialysis I am pretty much down until the next day.   It is a 'special' kind of tiredness....just draggy, can't concentrate, just want to veg.

So I guess my questions to you experienced folks are:
1.  Is the degree of "washed out" somewhat of an individual thing, depending on whatever?
2.  Did you find it went away eventually?  or reduced?
3.  Are there particular lab results that should be zeroed in on for clues?
4.  Or maybe: "Welcome to the world of Dialysis Dan...this is the way it is"   

---Dan

[HILINE]

that's the way it is

[jeannea]

For me "that's the way it is". For some people they get used to it. I don't know what makes the difference.

[boswife]

I sometimes feel bad stepping in when im not the D patient but still i will  ................  In my husbands case, we were always  surprised that he walked out of D feeling much better than the others 'looked'.  This went on for the first year actually and then, we noticed a decline and that he too was walking out 'looking' and feeling wiped out with little left for the day.  Thats when NxStage came into play.  We are now home for 9 months with it and all is so much better.  Actually started feeling the 'better' effects pretty soon (actually just a couple of weeks)  after started ( as even that takes time to adjust to *your* spacific needs).  We're in a big slump right now as ?someone? didnt perscribe iron to hubby so he has gone all these months without it and it droped quickly 2 months ago so are now working on bringing that hemoglobin back up.  Other than that, i think you'll find that your old self will return once your settled in with nxStage.  It's a wonderful thing!!!!!  Just remember to give it a chance as some (ME) take a bit of adjustment to the process but then it's easy peasy and you'll feel so much more control of your health.  Hope you feel better real soon... 

[CebuShan]

That describes me to a "T"! At first I felt pretty good (I was actually hungry for the first time in months!) but now...
I usually drive myself to and from D but some days I have had to stop by my husband's work to get him to take me the rest of the way home. Last Saturday, when I came home, I was just going to take a "little" nap. Woke up a couple of times to use the bathroom and let the dog out but did not actually wake up until 4:30 the next AM!
I, too, am self employed and now I have to schedule things much more carefully.
I used to get so frustrated with friends who "used to know" someone on D and "They never had any trouble." Now I just chalk it up to ignorance and the fact that the people that they knew probably just didn't tell the the truth.
I hope it does get better for you. They used to tell me that it would get better (just like being stuck) but now they don't say that to me any more.

Boswife: Have you tried using a cast iron (black iron) pan to fix some meals? It really does help raise the iron. I used to make sure I used mine before I donated blood. Worked every time!

[boswife]

Hehe.(cebu) All my pots and pans are cast iron . The pots though are the covered ones (le creset?sp)so doubt they help but twice a day in regular cast. Thanks for suggestion. Others may use as well:)

[Willis]

I'm on a PD cycler and I have a really hard time getting going in the mornings. So even with PD I get that washed out feeling. Fortunately--an advantage of the longer dialysis cycle time I assume--my energy starts to come back within an hour or so once I'm up and moving. (What energy I still have!  )

 

[cattlekid]

For me, it greatly depends upon the amount of fluid that I need to have taken off. 

If I can keep the amount of fluid removed to 2.5 kilos, then I usually come home with a modicum of energy - enough to slap together some dinner, clean up the kitchen and play with the dog a bit before bed.

If I can keep it to 2 kilos or under, then I usually skip out of dialysis with plenty of energy.  On those days, I've been known to leave dialysis, get home, pick up the hubby and hit the stores for weekly errands.

If it's 3 kilos (like last night  ), I drag myself home and hit the couch for the remainder of the evening. 

I don't allow the staff to remove more than 3 kilos, because that's a guaranteed crash for me.

[Katonsdad]

Its been a while for me on the D side , but I do remember when removing extra fluid I was one whipped puppy . Just enough energy to
drive home. On work days I would only take off the minimum because I would have to work 12 hrs shifts and did okay (desk work)

You will need to let your body get used to the quick chemical changes that occur during D and play accordingly.

Katonsdad

[Ken Shelmerdine]

I still havethe washed out feeling even though I don't have any UF taken off no renesp just iron injected into the line occasionally and yet when I get home I have this strange feeling of extreme body  shock and I feel cold from the inside out.

On non dialysis days (provided I've had a good nights sleep) I feel really well and just seem to have all my energy back as if nothing happend. Even on dialysis days before I go in the afternoon I still feel good but then as the time draws nearer I start getting down because I know I'll be so crap at the end of the session. 
 

[sullidog]

I think you will get used to it, but even if you do you will still have your days.

[Dannyboy]

Thanks for the comments on this washed-out business.

Seems like for most it is more or less an individual thing, and that some see a strong connection between too much fluid removal and being 'washed out'.

Fluid removal could be at the root here for me, as they are removing about an extra Kilo more or less, each session, trying to get me to my IW.   I haven't really had a session where just my "between sessions" fluid gain was the only thing removed, so perhaps things will change for the better when that day arrives, hopefully in the next few sessions.

--Dan

[RightSide]

That "washed-out feeling" will be even worse if you're anemic.  Because anemia will make you feel weak and tired anyway, and then the dialysis on top of that.

What's your hematocrit and hemoglobin?

[jbeany]

It took a couple months for me to get to the point where I had enough energy to do more than drive home and take a nap.  Eventually, I got to the point where I could run errands afterward, but yes, only if I had done well on my fluid gains.

I used to get so frustrated with friends who "used to know" someone on D and "They never had any trouble." Now I just chalk it up to ignorance and the fact that the people that they knew probably just didn't tell the the truth.

Well, I suppose some people do function really well on D - and they are usually the ones on some form of frequent, home D, too.  On in-center, I used to look fine when I saw my friends, too.  Who leaves the house when they are dizzy, weak and puking?  That and enough make-up and blush to look healthy, of course they all thought I was "fine."

[lmunchkin]

Danny, I do think it is individualized to some point!  And it all has to do with fluid removal.  The thing about doing NxStage is that when you start to feel washed out or cramping, you just lower the UF on the machine and it should get better.  The thing that we found out when he went in-center is he is not getting adequate cleansing and I venture to say that most in-center do not.

You are put in this chair for hours to remove what has built up in the body at a very high rate of speed ( those big machines can do that). Your blood is rushing to meet the dialysate for cleaning and then rushed back into the body. They have to get you out so they can be ready for the next patient to "sit in the same chair" and so they can go on with their lives at home.  They are on time restraints.  I understand that!  We all have quota's to meet.
That being said, when it comes to well being of my love one, I would much rather relax and take my time dialysing him.

Like Boswife, this Nxstage is the best thing going, because you are in control of his/her health and treatments. In-centers, IMO, should only be for ER only.  Thank God they are there, but even they should admit (but can't) longer is better and slower is easier!  I would rather be the tortoise (take my time) than the hare (get there quicker) anyday.  Plus, Danny, the drawback is you have to do it more times a week.  Now, my husband is doing it 3 days on and 2 off.  That is great, but he has the discipline to maintain that.  Plus, it is jus soooo much better doing it in the comforts of your home. You don't have to wait to be put on and you don't have to worry about being late getting off! You don't have to wait to be driven home or to drive feeling "crashed out".  This is all very serious stuff when you think about! I have witnessed some patients coming out "wiped and lethargic" and get in their cars to drive home. That is so sad and very dangerous not only for them but others on the highway.

But when we first started NxStage he had to do it 6days a week to start.  Then went to 5 days, and is now 3 days on and 2 off and so on...
He may have to go back to more days but for now his ktv is good (normal). But if he had to do it 7 days, I still would do it.  For the simple fact, he feels so much better because he is getting good dialysis.

I got to tell ya, We do love doing it at home and pray we never go back to the center.  Im so glad you picked home D.  You will learn this and wonder what the heck you were waiting for!!!  Just ask anyone doing it at home now, they will all say the same thing.

Cattlekid, werent you going to try NxStage at home?  I think I read where you were considering it at one time!  Hey, try it, if it don't work out, the center is not going anywhere.

Sorry for the long post, but where ever NxStage is mentioned, I just have to "push" it.  Sorry.

lmunchkin   

[cattlekid]

Yes, I still am thinking about it.  However, I do have one issue with it right now.  From everything I understand, you need a care partner to go through training with you.  However, I won't have one.  DH cannot take that much time off work without serious financial impact to us.  If they would have training in the evening, we would be good but he can't leave work early to go to training.  I am already planning on doing all of the work myself, I just want him to know the basics so that if there is a emergency he knows what to do. 

Now that I have my fistula, after I know it is working and the catheter is removed (projected to be around Thanksgiving), I will pursue NxStage fully.  I am already prepared to do battle about the necessity for a care partner.  I am perfectly compliant with all meds, dr. appts, bloodwork levels etc. and have full use of my faculties so I can't see why I would need a care partner other than in case of emergency.

Cattlekid, werent you going to try NxStage at home?  I think I read where you were considering it at one time!  Hey, try it, if it don't work out, the center is not going anywhere.

Sorry for the long post, but where ever NxStage is mentioned, I just have to "push" it.  Sorry.

lmunchkin   

[CebuShan]

lmunchkin: I keep hearing people talk about Nxstage but what exactly is it? Is it one of those machines where I'd have to go get that tube in my stomach? My husband & I went to an orientation on that and didn't like what we were told.
1) We would need to completely clear out 1 bedroom for the machine and all the supplies.
2) We would have to seal off the vents and window to that room (no heat or air could be blowing)
3) They strongly suggested that we get rid of our animals.

Those were the 3 that just wouldn't work for us.
We live in an old army-issued mobile home. We don't have an attic or basement.
The insulation is crap. I didn't want to sit in a room suffocating in the summer with no air or freezing in the winter with no heat. I figured that would kill me faster than going without D!
Since we live on a farm out in the middle of nowhere, there is no way I'm going to get rid of my only company during the day!

Like I said, I don't know if this is the same thing as Nxstage.

[Riki]

I think the washed out bit is different for everyone.  There's a fellow that goes in centre with me.  He started on hemo the same time I started on PD, so about 7 years ago.  He does his treatments in the morning on the same days that I do in the afternoon, so he's leaving when I come in, around 1pm.  He leaves, goes and works till 8pm or so, and until recently, was going home to his girlfriend and their newborn son.  I honestly don't know how he does it.

I *can* go out after dialysis, I just prefer not to.  I have left, gone out to supper with the girls, then went to a movie.  The problem with me is, I can go, as long as I haven't had a bad session (low bp), but the second I stop, I start to get tired and sleepy.  I remember leaning back in my seat at the theatre once, and just closing my eyes and listening to the movie for a few minutes

lmunchkin: I keep hearing people talk about Nxstage but what exactly is it? Is it one of those machines where I'd have to go get that tube in my stomach? My husband & I went to an orientation on that and didn't like what we were told.
1) We would need to completely clear out 1 bedroom for the machine and all the supplies.
2) We would have to seal off the vents and window to that room (no heat or air could be blowing)
3) They strongly suggested that we get rid of our animals.

Those were the 3 that just wouldn't work for us.
We live in an old army-issued mobile home. We don't have an attic or basement.
The insulation is crap. I didn't want to sit in a room suffocating in the summer with no air or freezing in the winter with no heat. I figured that would kill me faster than going without D!
Since we live on a farm out in the middle of nowhere, there is no way I'm going to get rid of my only company during the day!

Like I said, I don't know if this is the same thing as Nxstage.

Those 3 things are all a load of bull.  When I was a kid on PD, we lived in a crappy trailer that had wood heat.  Ours happened to have a porch added on to it, where the stove was.  We kept most of the dineal there, and the bathroom had space for a washer and dryer, with cupboards, so a lot of stuff was in there too.  We managed to fit the cycler (which at that time was about 6ft high) in a bedroom which really wasn't big enough to fit a bed into, and I have NEVER given up animals, and never had any trouble.  They were ok as long as when you were setting up the machine you could close windows (so nothing could blow in and contamimate things) and doors (to keep the pets out).  I slept through PD, so my days were free, or as free as they could be.  I was in junior high school at the time.

[JeanieSpokane]

For me, it has definitely been a self-study in how much I eat, and what I weigh when I go in.  I know my limit - so try to keep the fluid removal to under 2.5.  I can handle 3 - but my bp will crash more and then they'll have to add fluid and I leave with about .5 additional that I'll have to lose the next time.  So I really watch my food intake the day before dialysis.  If I am "heavy" (say, I need 3.2 taken off - I tell them no more than 3).  My happy medium is 2.5.  Lately, I average between 2 and 2.5 - Mondays are always the worst because I have that extra day of eating.  When I started D two years ago - it wasn't a problem because I had zip appetite.  Now, food tastes great and Mechanic Man (my Partner in Sin) is a wonderful cook - so I'm eating way more than I should.  Or - I used to.  Now I really watch it because the key to feeling good after dialysis is all in how much is removed.  It's not like our mothers told us when we were kids - eat all your food, clean your plate, there's all those starving Chinese orphans. . . . 

[Dannyboy]

Yeah, I'm seeing a connection between the degree of 'washed out' and the amount of fluid being taken off per session.   I think I'm REALLY close to IW, perhaps will be there next session, will be looking for things to improve.   

@rightside:   RE: Anemia can be a factor, too.....  Well a couple of weeks ago (latest labs as of this moment):  Hemoglobin was at 11.9  Hematocrit was 36.2     These numbers are WAY better than pre-D (which was only a month ago, ie just started D in August).     

---Dan

[brandi1leigh]

I've been on Hemo for about 18 months. People kept telling me I'd get used to it and it would get easier. Unfortunately, that's not the case for me. I still get that washed out feeling (I call it my dialysis hangover). The good news is that I have seen people at my center that don't look like they've been run over by a truck, so maybe you'll be one of the lucky ones who eventually adjusts. Good luck!

[Dannyboy]

"dialysis hangover"...I like it.
LOL

[lmunchkin]

Cebu, NxStage is a little HEMO Dialysis machine that people do at home.  If you ever did hemo in the clinics, it is that but much smaller.  What you are refering to is PD (Peritoneal dialysis) which is Home dialysis too.  But instead of going through the veins with needles (like in-center) you are dialysising through a catheter inserted in to the belly area.  This catheter is in the peritoneal cavity.  This cavity has tiny little blood vessels all throughout it. The peritonium cavity covers every vital organ in the body (not sure about the heart). It is more or less a shield that can protect these organs.  When you put dialysate in to this cavity (Fill) The dialysate immediately absorbs from those tiny vessels ,all excess fluid in the body, then after certain amount of time, you will drain that out, and refill again to absorb more, and so on and so on.

PD, is really a unique form of dialysis.  The draw backs, IMO, is it does require excessive sterilization of the exit site.  My husband did it for 5years until he got an infection that ultimately ended PD.  But it was a great modality too.  It is really an amazing discovery, IMO, because the peritoneum looks like just another layer of skin in the body, but when you put liquid in it, it blows up like a baloon.  And when you do that, you really see what this cavity covers.

Other draw backs are those heavy bags and the storage, but like I said, we did it for 5yrs, and had he not had infections, we would probably still be doing it. But, I personally (as the caregiver) prefer the hemo because it deals directly with the blood.  But both are good modalitys, just as long as it is done at home!!

lmunchkin

 

[Riki]

Last night, just for the heck of it, I figured out that I have been on dialysis a grand total of 9 years and one month, since February of 1991. Of that, if I got my math right, 6 years and 5 months of that was on PD.  I loved it.  If you're careful, you'll never get an infection.  In face, when it was just me and my mom looking after me, I never did.  Once the dialysis nurses started doing dressings and changing tubing, well, that was my downfall.  If it wasn't for a dialysis nurse not following procedure, I'd still be on PD.  It's very easy to look after things, and it's incredibly flexible, when it comes to schedules.  Everything is on your own time, instead of someone else's, like with in-centre hemo.  I miss it so much, it's so not funny.

[lmunchkin]

I think thats excellent amount of time on PD, Rikki.  Especially without infections, thats something to brag about.  PD is definately and awesome way to go.  We had no complaints with it, other than the few I mentioned above.  But I really do like this Nxstage machine at home.  Could you do NxStage, Rikki?

I believe if you did, you would really like it, just saying!  But some really don't mind going In-Center, it really works for them.  It is what ever works best for the individual.

lmunchkin