Six Kilos!

[devon]

Friday I went in early due to schedule issues.  The first two hours were pretty usual but in the third hour my BP kept going low.  In the fourth hour, the alarm kept going off about every ten minutes.  When I weighed myself out, I was down SIX kilos!  That might explain the lightheadedness and the low BP.  They were only supposed to take 5 kilos.  After about 15 minutes rest, I could walk out the door and drive home.  It was nice to be out of dialysis at six instead of nine at night!

It was pretty upsetting while it was going on but frankly, I'm glad to be rid of the extra kilo.  It was a small price to pay for the extra taken off.  Now the challenge is to keep as much of that off during the weekend so I don't have to go through it again any time soon. 

-Devon

[flip]

Do you know if they did a UF profile? That's where more of the fluid is taken off in the early part of the session and very little is removed in the final hour.

[RichardMEL]

Dr Flip... I don't want to be seen to be correcting you but.... just a minor nitpick on the UF profiles There are 6 of 'em - at least on the feserius machines I've seen. Anyhoo not all of them just take off more at the start. Some of them, like profile 5 and 6 take a more staggered approach. UF 6 takes off more and "steps" every half hour, eg: the most for 30 mins, then 30 mins at 100ml/hr, then back up to more off, but not as much as the first lot, then back to 100, and so on. UF5 is similar except the "high" rate is the same.

I used to like profile 3 which was a steady drop from a high start down to 100 in the last half hour. That was good so by the end you're at a pretty low UFR which is far less taxing on the system.

Anyway back to devon... that's crazy. Do they not let you see the machine settings to check for yourself? I *always* double check the settings just in case. Usually it's fine but every so often I pick up a mistake - usually with their adding up of the target UF lol. Luckily my nurses are all pretty good and ask me if I'm happy with the pump speed, the settings, if I want a UF profile etc... It's nice that they don't treat me like an idiot and have some understanding of what the deal is.

Taking off over a litre more could lead to cramping and/or a crash. Did they even stop the UFR when your BP went low and you felt faint?? They should have checked their figures then also and realised it was too much and stopped the UF IMHO. You're lucky you got off with a kilo under.. which means a few extra drinks which is a nice bonus, but I'd hate to be that far under going through a crash or something when it could have been avoided. ugh!

[flip]

Sorry, Richard. I forgot to mention the numbers. I use Profile 2 when I want to take off a lot and most of it early.

[Rerun]

See if they can run a "Crit line" on you.  That measures what your recovery rate is for fluid to blood ratio.  It lets you know how fast fluid is coming back into your bloodstream from your tissue.  If it is not recovering very fast then you are close to your dry weight.  This saves the crashing low blood pressure.  (no fun)   If at the end of your session your fluid is recovering fast then you should challenge your dry weight a little bit.  

[devon]

Excellent point about looking at the settings! 

They don't face the machine toward the chair and so I can't see the settings.  I will bring this up with the Charge Nurse and talk to her about the settings and being able to see them.  I'm sure I'll be the only one but I don't mind being "different"!

Thanks for the advice!

-Devon

[flip]

I always insist that they turn the machine where I can see it. They know that if they don't, I'll get up and turn it myself. Usually I move my chair and the machine before I sit down and hook up.

[monrein]

I agree with others who insist on seeing the machine and knowing everything that's done to you as well as why it's being done that way.  I'm at a self-care clinic so I set up my own machine and all the parameters....every one.  If my BP starts dropping or I feel crampy I turn to minimum UF and don't even ask or tell anyone. I'm totally in charge and they are my backup.  Today they taught me how to ramp my sodium at the start of my run then turn it down every hour.  This is supposed to help with my "Monday headache" after my 2 day break from daily.
Even if you're not in self-care, it's still a good idea to check everything yourself because mistakes ARE made and there's no such thing as too many eyes checking the facts.  Anything you don't understand keep asking until the explanation really makes sense to you.

[BigSky]

It could be that the machine was set for the right amount of fluid to be removed but the extra fluid removal could be from the calibration on the machine being off.

[donnia]

I agree... when I was on dialysis I would insist that they turn the machine towards me... if they forgot I would flag them over after about 2 minutes of being on and ask how much time I had left    usually they would say "oops... sorry" and turn the machine towards me.... if they just told me how much time I had left... I would wait about 2 minutes again and flag them over to ask how much time I had left    and so on and so on until they got the hint   

[thegrammalady]

i always have the machine turned toward me and tell the tech how much to take off. they're not allowed to make those decisions for me. the uf profile and machine maximum speed are set by my doctor.

[Ang]

i  generally  get the  machine   swung  my  way,forget  sometimes.


would  you  call  this  a  mistake  or  just  neglect


i  pulled  the  nurse  up  one  monday,  she was  going  to  remove  an  extra  litre  of  fluid  till  i  told  her  2.6   not  3.6
wasn't  i  surprised  when  i  came  off  a  whole  kilo  under  my  ibw

[DAUGHTER]

how can i get all the info about dialysis so i can help my dad with his

I am an LPN with no dialysis knowledge

I don't even know the abbreviations you guys are using l
UF?  uremic filtration?

he doesn' t trust techs at all or what causes what symptoms  he is also allergic to Heparin SCARY

one time he got major stomach cramps (he thought it was the ten vienna fingers he woofed down before dialysis) he's usually not that naughty

any help you guys can provide so I can better understand the process would be appreciated

thanks

[Jess21]

Devon- atleast you can get 6 kilos taken off!  My center has a new rule of "4 kilos a time" only, but I always get sick after 5 anyway.  But yes as the others suggest, look at the settings!  Then you'll know (well except for if the machine is wierd like mine last week and takes off more than they say!  but that's another story)!

[flip]

UF is the amount of fluid that you pull off (ultra filtration). It can be adjusted to fit his needs. Many patients are allergic to heparin and need special precautions. He probably shouldn't do the vienna sausages (I love 'em too) because of the extra sodium. Please feel free to ask any questions, most of us are battle scarred veterans and very willing to help.

[monrein]

DAUGHTER, Flip is right, ask questions about everything so you'll understand the process and don't try to figure every single thing out at once.  Ask us specifically if someone posts something that isn't clear because all the little bits of information add up to what little control remains for us to have as patients.  Diet is really important too (and difficult).

[twirl]

if I took of 6, I would be too sick to walk out

[boxman55]

I have done 6 but right at hitting it my BP went to 78 over 46 and I went into a tail spin...Boxman

[willieandwinnie]

Holly s**t. the most we ever pulled off Len was 3 and he didn't do too good. Bad crash. I can't imagine 6. 

[Jay72]

Sorry to jump in, but I have read a few of your posts and I was wondering if you are on a fluid restriction?  I would guess even 5 kilos from Wed to Fri would make you feel like crap, never mind six.  |It might be worth you while to for just one day measure how much you take in and then how much you pass, and if it is more than you though then it might be worth not drinking quite as much.

Just a suggestion.

Jay

[RichardMEL]

Yes Jay, many of us are on fluid restrictions for just this reason. The more fluid that is retained in the system it is not healthy for the heart(more stress on it) and lungs. I know for myself I am very careful with how much fluid I take in an manage to keep myself to 2kg gain between treatments... sometimes less and on small occasions a little more. I've managed 4.1 off at one time in the distant past, but I definitely didn't feel too good so I know my limits and know that if I don't keep to the fluid restrictions I'll pay for it with cramps, crash or worse... so it's a great incentive to not overdo it.

The way I handle it is I keep a (rough) count of how much I take in, so for example a small bottle might be 300ml, and a coffee 250ml, plus I weigh myself at home and keep track that way to make sure I'm doing OK. Yes, it's a bit anal (I feel like I obsess like a model or jockey or something) but I know how important it is to be aware of where I'm at. In general I find it works well.

Just on getting the machine facing to me to read it just yesterday one of the bosses came along and moved the machine away from me! I said to him I wanted it to face me so I could read it because I wanted to know what was going on etc. He said "Well if you're that interested in running it yourself why don't you go on the home program!" duh!! Because my cat wouldn't be very good assistance idiot!!!   

[flip]

I sometimes wonder where the fluid comes from. I watch mine fairly closely and still have good urine output. Yet I usually manage to gain 2-3 kilos between treatments now. I've taken off as much as 4.7, which was after one of my skips. I sometimes think part of it is natural weight gain. Although I'm at my dry weight, I'm still 8 kilos less than my weight that I've maintained for most of my life.

[Jay72]

I just started July 14 (for the second time in 10 yrs) and for the whole moth of July I was still not eating well and would goto my home training where I also had dialysis and I would be less than when I left, but now that I am eating better and am at home I find I usually have 2 to 2.5 between treatment, mind you my urine output has gone done already.

I just mentioned what I said in the last post because I read Devon's post when he started for the first week and he had a HUGE amount of weight removed each time, now i understand that some of it was fluid retention because he had not had a treatment yet but it seemed like a very drastic amount for a new patient to have removed in his frist three treatments and for how short of hours he was doing.

Jay

[circleNthedrain]

Wow! 6 kilos!!  I have a real hard time with 3.  I try to keep my weight gain around 2 kilos between treatments, and I feel much better.  Kind of hard on weekends, but do-able.  Glad you are getting along OK Devon.

[kidneyguy]

Unfortunately being on dialysis means ALWAYS keepig an eye on the staff. It doesn't matter how nice they are it's your life their playing with. Learn how the machine works and what the numbers mean both those on the machine and your labs.