what happens if i stop HD???

[beep]

ok i'm on dialysis 3 times a week @ 4.5 hrs a session  .After 3 yrs i've accepted this as my weekly routine.fortuanately the nurses are a great bunch.  ok now i dont have much of a social life actially Dialysis is the hilite of my week??  i dont/cant work.n as i said  dont have a life (also on my own 24/7) tho there is family at the end of a phone....
if i was to miss or stop fully a session what would happen...yes i know u would die   but btween stopping n dying what happens   do u go all giddy   fall over without warning   go to sleep if u can n  ot wake up
has anyone missed a handful of sessions did u collapse n got taken to hospital
I'm still passing urine but really its not worth talking bout
I am having trouble reaching my IBW n i just keep putting weight on n i swear to the nursee "but im not drinking much at all  there has been talk of an xtra session diring the week..my dialysing seems to b ok..just I cant contrll my fluid intake
all my bloods potassium creatinum are all in the acceptable range

[Michael Murphy]

Never mind if you stop if you have large fluid amounts removed every session sooner or later you will have a heart attack.  Removal of excess fluid puts a strain on your heart within the last tree months two of the regulars died from a heart attack both had fluid retention problems.  Even if you don't die the damage will effect the rest of your life.  Fluid control is the most important facet of hd. 

[beep]

as i said to dr   what u want me to do stop drinking altogether

[cassandra]

as i said to dr   what u want me to do stop drinking altogether

No beeb you don't have to stop drinking, just reduce the amount you drink. Drink small cups, but drink what you really enjoy. Take your meds with the food you eat, so you don't waste it on that.
When you're thirsty, have some mints (try sticking 10 in your mouth, it will make your saliva go into overdrive 
If you take super strong mints it will take you at least 20 minutes to recover, so repeat 3 times, than eat, and have a small drink.
The point is, you won't have time to drink.

Good luck, Cas

[Simon Dog]

Fluid control is the most important facet of hd.

This is one of the reasons I like the NxStage program.   I rarely take off more than 2kg in a 3.5 hour run.   I'm currently on the hose targeting 1.5L.     Even conventional (Fresenius Baby K) at home reduces fluid overload if you think to ask your MD for an every other day protocol instead of 3x/week.

One of the built in (and, in my opinion, intentional) failings of the current dialysis treatment protocol is a failure to proactively notify patients when compromises in quality of care are made for cost reasons - the biggest one of these being the 3 day protocol with the dreaded 2 day gap.

[Charlie B53]

I have to admit it has been difficult switching rom PD to Hemo.  The ice water that I freely drank on PD is  no longer allowed.  But I am still allowed a cup or three of pure ice.  An ice cube does wonders for soothing a dry mouth and thirst.

Lifesavers Mints are also always within reach.  I may have a dozen throughout my day.

I occasionally grab a half dozen cold grapes from the refrigerator, savor each one separately taking a long time to suck every drop of juice from each one before swallowing the pulp.

At weigh in this mornings treatment I thought I would be way over as I did succomb and took a few gulps from the milfk jug last night.

I was very surprised that I was only a HALF kilo over my weigh out Monday!

Never know how I did that!

[Michael Murphy]

There are numerous ways to cut down fluid, when you want to drink cause your mouth is dry fill a spray bottle and spray it into your mouth, I use a squirt gun duting the summer.  My personal favorite is frozen grapes as they defrost they help rehydrate your mouth.  Also remember any thing you eat ithat contains water counts.  The other thing that happens to me is pull off too much water and my digestive track stops and if I don't go I can gain several kilos between treatments.  Good luck it's doable and I just read a paper on the Implantable Artificial Kidney projects there are several nearing the start of testing,several have already been tested as Wearable Artificial Kidneys.  They took the implantable device and put it in a bag on a belt and the results have been good, people testing could drink whatever they wanted and eat whatever they wanted and the labs were great.  Rumor is the first implant testing may be sometime this year.

[iolaire]

There are some very long threads on this topic which you might want to read, including this one:
http://ihatedialysis.com/forum/index.php?topic=15216.0

From what I've read dying from kidney failure is not an easy experience.  I recommend giving the fluid control a chance.

[KatieV]

No beeb you don't have to stop drinking, just reduce the amount you drink. Drink small cups, but drink what you really enjoy. Take your meds with the food you eat, so you don't waste it on that.
When you're thirsty, have some mints (try sticking 10 in your mouth, it will make your saliva go into overdrive 
If you take super strong mints it will take you at least 20 minutes to recover, so repeat 3 times, than eat, and have a small drink.
The point is, you won't have time to drink.

Good luck, Cas

I keep a pint jar at my desk at work, which helps me keep track of, and limit my fluid intake.  I sip it throughout the day (I work in a call center, so lots of talking!).  For my situation, drinking 1.5 to 2 pints each day, plus a little with both morning & night meds, keeps my fluid intake in check.  On really thirsty days, I'll fill my glass with ice and suck on icecubes/sip as they melt.

When I was in-center, there was a running joke between a couple of us about cranberry juice & vodka!  One of the patients said he had always relaxed after work with a cold beer.  Since starting dialysis and having to both reduce his fluid intake and his phosphorus, he would end his day with a little liquor instead.   

[smartcookie]

Try measuring out your fluid at the beginning of your day.  That way you know you can only drink this much all day long, so you can ration it better.  Try gum and mints to quench thirst.  If you know you had a little too much fluid, try exercising and sweating some out. 

[beep]

ok its all about fluid control.....but i did ask apart ftom dying  what
do u xperience btween stopping HD n dying?
getting back to fluid control   how do controll these well doers who dont underatand.....at a social do..the ones who conatantly pester u...do u wanna drink  comw on drink up  have annother drink..  watz wrong come on drink up....no matter hoe many times i say    NO THANKS  how     do u handle thoae people???
as far as mints r concerned   im a Diabetic.....Watch out sugar levela   now thats an ohter story

[cassandra]

ok its all about fluid control.....but i did ask apart ftom dying  what
do u xperience btween stopping HD n dying?

Did you actually read Iolaires link?

getting back to fluid control   how do controll these well doers who don't understand.....at a social do..the ones who constantly pester u...do u wanna drink  comw on drink up  have annother drink..  watz wrong come on drink up....no matter hoe many times i say    NO THANKS  how     do u handle thoae people???
as far as mints r concerned   im a Diabetic.....Watch out sugar levela   now thats an ohter story

Okay, mints is not a good idea than, we have to find another something you can stick in your mouth. Try sugar free chewing gum? Not too many, just keep it with one. The point is to get saliva in your mouth.
The spray with water from Michael M is also a good one.

BTW have you measured the cups you use? Do you know how much is in those?

And for those people who pester you to drink? Just ignore them. They'll never listen, are not actually interested, so just drink a sip or two and leave the rest. I have a FIL who still gives me a huge full cup of tea. I take two sips and leave the rest. After 22 yrs (I tried explaining twice) I can't be bothered with that. Rather drink my shot (30 ml) of Cointreau when I get home. (There must be something nice that you love to drink, even in a small amount? As a diabetic,  alco messes up your sugar?)

NB I even brought a small cup to FIL so he could use that, but that was no good.
He also couldn't just fill His cup half, cos that was too much hassle.

Basically, it's up to you

[Simon Dog]

From what I've read dying from kidney failure is not an easy experience.  I recommend giving the fluid control a chance.

There is a difference between dying onf renal failure because you decline dialysis when informed your kidneys are failing, but still have some residual - you can get sicker and sicker over a long period of time as the residual tapers off.  It's quite another matter to be on hemo until you have zero residual/zero urinate, then stop.   You get a much quicker kill in this case.

[Michael Murphy]

The other need is to be very careful of salt intake.  Salt is bad for two reasons, first it makes you thirsty so you want to drink more, second salt causes the body to retain water. 

[smartcookie]

Death due to stopping dialysis can look different in different people.  A lot depends on co-morbids.  Basically, when you stop dialysis you will start to feel like you did before you started; fatigue, weight gain, foggy headed, nausea, etc.  You could die quickly from a heart attack from elevated potassium, or you could die very slowly.  Some people go into a coma from the toxins in their systems and then peacefully pass.  Some people get infections due to toxins and deal with sores and painful side effects of toxins.  Some fluid overload and struggle to breathe, saying they feel like they are drowning.  Some will vomit and have intractable diarrhea.  I have seen both.  I worked in hospice and as a hospital discharge planner before becoming a renal social worker.  Unless you go into a coma, dying from dialysis is the pits.  Really.  It is painful, scary and confusing.  If you are at the point where that is okay with you or you just have a terrible time on dialysis, I would work on fluid overload problem.  I am just being real, not trying to scare you.

[Simon Dog]

Unless you go into a coma, dying from dialysis is the pits.

We can thank the papist lobbyists in MA for depriving ESRD patients who want to go peacefully of that option.   Of course, home hemo patients have that option, but using it would be illegal and would therefore have to be done without proper medical/logistical support, would have to be done when loved ones had alibis (to protect them from persecution), and could not be done within two years of initiating any life insurance if one expected the family to collect.

I am on home hemo now, and having a great life - but I resent those who would interfere with my right to decide when to live and when to die.    I've already told my team of my plans to discontinue dialsys.   I've advised them my discontinue date will be shortly after my 85th birthday.

[smartcookie]

True, Simon Dog.  Some hospice agencies will let you filter toxins and not pull fluids if you want to go that way.  But not all of them, and, like you said, the legal implications of things like life insurance need to be considered.

[Riki]

I don't recommend dying from lack of dialysis.  It's not fun.  I came close once, when I was 12 years old.  We didn't know I needed dialysis until I was close to death.  I went into septic shock from the toxins.  I couldn't move or speak voluntarily (I yawned a few times, so that was involuntary), but I could still see, hear, and understand all that was being said and done around me.  It was terrifying, and it's not something I'd like to experience again.

As for fluid restriction, after 12 years, I've come up with a few tricks.

1. Measure.  Everyone has a favorite mug or glass that they always use.  Measure how much it holds so you know how much you are drinking each time you use it.

2. Keep track.  My memory isn't the greatest and I have a hard time sometimes remember what day it is, let alone how much I've had to drink, so I write it down.  I have a notebook dedicated specifically to keeping track of how much I drink.  I try to keep it between 2-2.5 litres between treatments, and definitely less than 3 litres, because I know that I can only take off 3 without any nasty effects (cramping, low bp, passing out, etc).

3. Plan ahead.  If you know you're going to be out somewhere, say out to dinner or whatever with friends, try to refrain from the morning coffee (or whatever a regular daily drink may be) that day, so that you can have a drink without worrying.  If you have someone who keeping bothering you to have another, and refused to take "no, thank you" as an answer, be blunt.  Tell them, "I'm fluid restricted for heath reasons, and I've had my limit."  That tends to shut people up.

A lot of people have given their suggestions for what to do to keep from drinking.  This is one of the things that I do.  I splurged and bought myself a counter top ice maker.  I ALWAYS have ice.  I also have a sports bottle, one of the ones you have to suck on or squeeze to get anything out of.  I know that, when filled with liquid, this particular bottle is supposed to hold 750mls.  I filled it with ice, and let it melt so I could measure the water.  It's about 300mls.  Now that I know this, I can fill that bottle with ice, and I drink the water as it melts.  It lasts me hours, and it's only 300mls.  When you only are supposed to have 1000mls a day, 300mls is nothing, especially if it lasts you all afternoon.

This is all that I do.  I have a 450ml iced cappuccino every night, and it's rare for me to go over 3kg, even on the weekends.

[Charlie B53]

Most every time I walk through the kitchen I reach into the freezer a grab a cube of ice.   Not so bad.

It's when I fill my glass with ice and carry it around with me.  I worry that I have too much, it does begin to add up.

[kickingandscreaming]

I know that not everyone has the option to do PD and that PD has an expiration date.  But all these really intense dietary and fluid restrictions make me wonder why anyone would choose Hemo over PD.

[Michael Murphy]

I have a house in the Adirondacks near a large lake one of the true joys in my life is on a hot summer day is to jump in and cool off.  PD would stop me from doing that.  Every ones life is different therefore everyone's choice of dialysis type would be different.  There is no right or wrong choice only what fits the persons life and what does not fit. Different people different choice,

[beep]

i chose HD  over  PD    cause at least ive got a chance to get out of home .With PD i'd b stuck at home alone,n would probably take short cts  if there are any
another reason is that i dont liks the idea of carrying those boxes everywhere i go ( if i was travelling) if im at home i'd have to stop doing whatever im doing  n hook up the bags 4 times a day
the main reason i chose H/D   when i started H/D i had a line coming out of my chest for 8 mths n it annoyed the living daylights out of me ...n developed a virus..  so theres no way im going thru life with a pipe coming out of my tummy

getting back to the question i asked(if i stopped wat would happen) i've asked at my clinic  n i keep getting the nurses saying back  " why do ask that  question" ?
aren't i allowed to know wat this disease can do to me ?

P.S.  does anyone know of a forum such as this one re Diabetes  i see there is a section discussing Disbetes  in the forum  but it is well an truly outdated by several years ?

[Charlie B53]

My PD cath was 'tunneled' upwards under my skin, deep enough I really had to push in to feel it.  It came out midway between the center of my chest and my left nipple about even height wise even with my nipples.  I never had a problem with the site, no infection.   Three and a half years and finally had a peritoneal infection from Hell.  After three months of antibiotics this infection kept coming back.  Finally gave in figuring the cath itself was contaminated within.  It came out and a Hemo cath stuck in going up and over my right clavicle and down into the vein near my heart.  Little over a month on Hemo so far.  Figure a couple more before I get another PD cath.

I did manual PD for a bit over a year.  Had my Cycler maybe two and a half years.  The Cycler was SOO much better than manuals.  Set up the machine every evening, connect and go to bed.  Get up in the morning, restart the drain to make sure it all came out, then poke the button to go on to the Last Fill with Ico for the all day carry.  DONE.   

The fluid and food restrictions on PD were almost non-existant.  I could eat and drink almost as I pleased.   Totally different from the very strict fluid and diet on Hemo.

I very HIGHLY recommend PD.  For me, it just works.  Labs were very good.  Far better than what I have now on Hemo.

Seriously think about PD.  Ask far more questions how it works for others.  It is not for everyone, but for those it works, it works very well taking off the excess water and toxins daily.

I would guess those on Home Hemo also do very much better.  But my needle-phobia, I would have to have a major mind set change to even think about using those needles.

I wish you well whatever method you chose.

Take Care,

Charlie B53

[Riki]

I did PD right up until I couldn't do it anymore.  When I was a kid, it was what I was started on.  We didn't really know anything about dialysis, it was just what was done.  I loved it, for a lot of reasons.  A lot of things about PD have changed since I started on it back in 1991.

There were less restrictions on what you could do on PD back then.  I was allowed to swim in the ocean, but not a pool.  I just had to change my dressing as soon as I was done swimming.  I was trained on the shower technique, and I never got any kind of infection as long as I or my mom did my dressings.  Things changed when the nurses insisted on doing the dressings.  When I asked about the shower technique when I was an adult, the nurse looked at me like I had two heads.

I liked PD because of it's flexibility.  I could set my own schedule, or I could visit with my grandparents in Nova Scotia as long as I brought supplies to do manual exchanges.  As a teenager, with the cycler, I could go to school during the day and dialyze at night.  Nobody knew I was on dialysis.

I do better on HD than I did on PD, I know that.  My weight is lower, I don't carry around as much fluid, and I have a little bit more energy.  Still, if I was able to go back to PD, I probably would.

[Charlie B53]

I had better labs while on PD.  I am learning to change diet to try to do better while on Hemo.