Sorry about this, but I need to rant...

[pigsty1953]

Ugh, a bad day at Black Rock yesterday.  A very bad day indeed.  As the nurses told me over and over again, and as I well know, it is all my fault.

I drink way too much, 3 4 liters a day, and this is what is going to happen when I do.  I spent over an hour in the chair after they took me off the machine because my BP is so low, and I get cramps and I got pretty sick.

This was the worst day since I started dialysis.  Generally speaking, I have good days and bad days.  Sometimes I go in there and have not drank so much, but I was feeling sorry for myself, and that is what happens.

I try to stay positive and do what they say, but sometimes it just does not happen.


Sorry about the negativity, it has been a very rough year.  Thank you all for being here.



Take care, Randy in Clearwater, FL

[Joe Paul]

This life of dialysis takes time to get used to. Be patient with yourself, try not to get too discouraged, then beat yourself up. I'm not saying its easy, its just hard to learn new limitations.

[meadowlandsnj]

Ugh, a bad day at Black Rock yesterday.  A very bad day indeed.  As the nurses told me over and over again, and as I well know, it is all my fault.

I drink way too much, 3 4 liters a day, and this is what is going to happen when I do.  I spent over an hour in the chair after they took me off the machine because my BP is so low, and I get cramps and I got pretty sick.

This was the worst day since I started dialysis.  Generally speaking, I have good days and bad days.  Sometimes I go in there and have not drank so much, but I was feeling sorry for myself, and that is what happens.

I try to stay positive and do what they say, but sometimes it just does not happen.


Sorry about the negativity, it has been a very rough year.  Thank you all for being here.



Take care, Randy in Clearwater, FL

Randy--
Hang in there.  Rant all you want, this is what this place is for.  The drinking part is so freakin' hard.....I know. 

Donna

[angela515]

Limiting fluids is hard, no matter how long you been on dialysis.... that's one of the many factor's that made me want to change to PD from hemo... even though you still have a fluid restriction on PD, I basically can drink how much I want... since I'll be taking it off that night while I sleep, and not have to wait every other day like on hemo. I can't go crazy and drink gallons of fluid, lol... but I don't worry about being thirsty as much I just drink something if I want too... plus when I was on hemo I lived in Las Vegas... 120 degree summers.... screw that, I was drinking tons of ice water, lol.

[kitkatz]

It takes time to develop good habits and being on dialysis can sure make you feel like breaking good habits.  It is funny when we talk about drinking on this board it is not alcohol, but water!  

[Zach]

I'll second that, with a J-D on the rocks!

[RichardMEL]

I am so with you mate. Prior to dialysis I used to drink 3-4 litres a day.. I *loved* drinking water... nobody had to tell me to drink 8 cups a day or whatever it supposedly is for healthy people. Yes I also drank other bad things like Coke and stuff but well that all changed when I was was introduced to dialysis.

It's funny (well not really) since I just had to explain it to a guy the other day. He thought when I said "I can't drink much" I was just talking about booze... when I said "no.. it's everything" he freaked out and wondered how difficult it was.

It's funny though, nearly 5 months in to it, some days I find it quite easy to go 5-6 hours without a drink and I can keep to a 1l/day (this is my limit) fluid intake. Some other days oh my god I just want to take the whole 2L bottle to my mouth and swig it down.

Mostly I seem to be able to keep to between say 1.3-1.8 over per session (thurs/sat) and say 2.2-2.6 (after a weekend - tues).

I know it is difficult, but every time I crave a drink I try to think of the consequences.. both short term like low BP, cramps etc and the longer term ones like possible issues with the heart etc.

For me, the fluid thing is the hardest part about being on dialysis. I think many of us here know just how difficult it is. Hang in there.

[angieskidney]

I am getting better with my fluids but it is VERY hard ... especially for me since I didn't have any fluid restrictions before my first transplant and then I was told to drink 3 - 4 L per day .. and well I kinda just kept that up .. for 11 years .. then to be told not to drink more than 1 L per day?? Damn ya right!!

[Bajanne]

The first thing that was a reality check for me was Jamie (a former member) talking about how much fluid they were taking from him, and how he was passing out in his sessions.  On December 31st he posted saying that it wouldn't be long before he goes to that happy place, because of how he was passing out.  They were taking off like 7 and 8 kilos from him.  On January 1st, we got the news that he had passed away.  That sobered me and for a long time, I took my fluid restriction very seriously. 
However, recently I was having a problem with it, and having to deal with lots of low BP and cramping.  Well, I am much better now.  Today, I was only 2.6 over my dry weight.  WOOHOO!  I am going to try to keep it even lower. I had a picture perfect session today.  The nurse who puts in my needle before I can even winch did it.  I slept for nearly the entire time.  No cramping, though there was a low BP session, but she just dealt with it immediately and things went fine.  My bleeding stopped in record time.... a great dialysis day!

[nextnoel]

Bajanne, you're really on a roll!  YOU GO, GIRL!

[stauffenberg]

As I said to one of the dialysis nurses once, there is no government on earth so tyranical as to restrict the amount of water people are allowed to drink, because even Stalin or Hitler would consider this too deep an invasion of the autonomy of another human being.  It is not the patient's fault for drinking when he is thirsty, but it is medical science's fault for having nothing better to offer us as a treatment after 60 years than a dialysis machine which forces us to endure the perpetual torture of thirst.  Would you rather be dying of thirst all your life or be dead?  If you'd rather be dead, then the 'treatment' offered to keep you from dying is an utter failure.

One dialysis nurse I knew tried to keep to the fluid restrictions imposed on patients for a day and found she had used up her whole quota by 11 AM, and so could have nothing to drink, theoretically, until 8 AM the next day.  She admitted that the conditons imposed on the patients were unacceptable.

[angieskidney]

The first thing that was a reality check for me was Jamie (a former member)

Oh crap yes. I knew him personally. He used to love to go out on weekends with his friends and would come in with over 7kg to take off. He was the reality check for me as well. He wouldn't just pass out. His HEART would STOP! A real wake up .. After that I never drink as much as I used to. But when he died mind you it was NOT in dialysis. He fell and the fall disloged a bloodclot from his knee that went to his head

having nothing better to offer us as a treatment after 60 years than a dialysis machine which forces us to endure the perpetual torture of thirst.  Would you rather be dying of thirst all your life or be dead?  If you'd rather be dead, then the 'treatment' offered to keep you from dying is an utter failure.

Aren't you a ray of sunshine..


Randy, I know it is hard but over time it does get easier. But I must admit, that I would rather never be allowed any of the foods I enjoy than to be restricted on my fluids like I am. So I understand. I find sucking on ice helps and freezie pops and sucking on non-sweet candies (I find the sweet ones make me thirstier).

[Zach]

Would you rather be dying of thirst all your life or be dead?  If you'd rather be dead, then the 'treatment' offered to keep you from dying is an utter failure.

This is one of the most idiotic rhetorical questions you have posted, stauffenberg!

Just as protein intake has been adjusted up wards over the years, so has the fluid restriction, albeit a small increase: A total of 1.25 L a day or more, depending on the patient's weight, activity level and the temperature outside.  It is true, that some dialysis personnel are behind the times on this one.

Controlling sodium intake is a major key to controlling thirst --both as a function of dialysis and of food intake.  Too many patients are being dialyzed at sodium levels higher than necessary, which leaves them thirsty as soon as they finish their day's treatment.  And if the patient eats "out" all the time, whether its Fish n' Chips or a Big Mac or a Taco, controlling sodium will be nearly impossible to do. 

Would you rather be dying of thirst all your life or be dead?  The question should be, "What are you willing to do to control your sodium, so you are less thirsty?

Some times it's a matter of choice ... or ignorance.

Yes stauffenberg, life is full of compromises--one cannot be an übermensch if you have a chronic illness, whether it is treated with hemodialysis or transplantation.

[Sara]

But when he died mind you it was NOT in dialysis. He fell and the fall disloged a bloodclot from his knee that went to his head

I never knew that.  Thanks for posting that.

[BigSky]

Controlling sodium intake is a major key to controlling thirst --both as a function of dialysis and of food intake.  Too many patients are being dialyzed at sodium levels higher than necessary, which leaves them thirsty as soon as they finish their day's treatment.  And if the patient eats "out" all the time, whether its Fish n' Chips or a Big Mac or a Taco, controlling sodium will be nearly impossible to do. 

Would you rather be dying of thirst all your life or be dead?  The question should be, "What are you willing to do to control your sodium, so you are less thirsty?

Well said.

[BigSky]

Oh crap yes. I knew him personally. He used to love to go out on weekends with his friends and would come in with over 7kg to take off. He was the reality check for me as well. He wouldn't just pass out. His HEART would STOP! A real wake up .. After that I never drink as much as I used to. But when he died mind you it was NOT in dialysis. He fell and the fall disloged a bloodclot from his knee that went to his head

I do not know this to be the case of what happened to Jamie but it is worth mentioning.


People tend to deny they are gaining actual weight and try to put off any amount over their dry weight as all fluid gain.  This can lead to too much fluid trying to be pulled off repeatedly and can result in clots forming because the blood is so thick.  If one consistently comes in over by a large amount over their dry weight it is advisable to be monitored by a crit-line to make sure you are actually having the right amount of fluid removed.

[stauffenberg]

Another problem is with the way nephrologists interpret hypo- vs. hypernatremia.  In my case, I never ate any salt at all, aside from the minimal amounts that were in even the salt-free foods I was eating, which would lead to my bloodwork showing a very low sodium level.  Because it is much more usual for patients to have a low sodium concentration from excess fluid intake than from deficient sodium intake, I was always being blamed for driniking too much water, when in fact I was just getting too little sodium.  I once actually found myself in the paradoxical situation of one nephrologist ordering tighter fluid restriction at the same time another was ordering saline infusions -- each trying to correct the same problem, which was low sodium concentration!

But the overall degree of fluid intake restriction is unreasonable.  Prior to dialysis, as I know from a period when I was in a part of the world where it was safe only to drink bottled water, I used to consume 21 liters of fluid a week.  After starting dialysis I was restricted to 9 liters a week.  Now ask yourself, how many functions necessary for life, such as brerathing, heart beating, or fluid consumption, can you diminish by a factor of more than 2 and still survive, much less endure?  The plain and simple fact of the matter is that dialysis, as a therapy, makes unreasonable demands on the capacities of a human being to tolerate unsatisfied stimuli.

[gizmar]

I find myself in transition with fluids and it's caused it's share of problems.  My output used to be greater hence I got comfortable with a certain amount of fluid intake.  Now that my output is just about nil, I'm having to rethink what I do including the amount of fruit and vegetables I eat.  Of late, I've been going in around 4 kg over and really feel like my heart could stop.  This is a subject I have great empathy for and really wish I could hit the magic formula.  Just when I think I've been so good, I go in 4 or over.  It's not fun.

[kitkatz]

Me too. I hate it now.  Juggling the fluid intake against what the body is doing to you.

[strateup]

Hang in there Pigsty, While a good number of people may have the discipline to have low weight gains there are probably just as many of us lacking that ability.  I usually gain about 4 kilo's during the week and about seven on the weekend.  I used to get the lectures, but I think they finally accepted the things they cannot change.  I can usually pull off 6 without much problem.  I take 4 tablets of quinine, which virtually eliminates the cramps.  Everyone has to have their own definition of living. I feel like crap 3 days a week (which us 43% of the time) the other 57% of the time I just live life.

[strateup]

Hang in there Pigsty, While a good number of people may have the discipline to have low weight gains there are probably just as many of us lacking that ability.  I usually gain about 4 kilo's during the week and about seven on the weekend.  I used to get the lectures, but I think they finally accepted the things they cannot change.  I can usually pull off 6 without much problem.  I take 4 tablets of quinine, which virtually eliminates the cramps.  Everyone has to have their own definition of living. I feel like crap 3 days a week (which us 43% of the time) the other 57% of the time I just live life.

[goofynina]

Everyone has to have their own definition of living. I feel like crap 3 days a week (which us 43% of the time) the other 57% of the time I just live life.

Good for you Strateup,  keep on keepin' on my friend 

[Black]

...The plain and simple fact of the matter is that dialysis, as a therapy, makes unreasonable demands on the capacities of a human being to tolerate unsatisfied stimuli.

Shouldn't that read, "that 3 times a week dialysis, as a therapy" since most patients who do more frequent dialysis are able to consume and remove far greater quantities of fluid?

[stauffenberg]

More frequent dialysis is simply not available in many countries, and 3 times a week is the standard frequence in first-world countries.  Also, there is a trade-off, since if you want to have less trouble with fluids by having more frequent dialysis, then you have to accept the burden of more medicalization of your life with additional time on dialysis.

[Black]

More frequent dialysis is simply not available in many countries, and 3 times a week is the standard frequence in first-world countries.  Also, there is a trade-off, since if you want to have less trouble with fluids by having more frequent dialysis, then you have to accept the burden of more medicalization of your life with additional time on dialysis.

I understand about the differences in what is available in different countries, but I disagree with your claim about there being a trade-off and "more medicalization of your life", especially in light of the recent advances in nocturnal and home dialysis.

When the total time taken out of three days week for in center dialysis is computed, it usually adds up to be a longer time than more frequent home dialysis.  Each dialysis day takes commute time both ways, plus dialysis time, plus clot time, and often recovery time - roughly 4.5 to more than 6 hours -- X 3 times a week = 13.5 to more than18 hours a week.

Frequent home dialysis takes about that same amount of time, maybe a little less, maybe a little more, and it's done at HOME!!  Some patients on nocturnal lose only very few minutes out of each day to dialysis.  I don't see how that can possibly be seen as "more medicalization of your life", especially when weighed against the health improvements, and the more liberal fluid and food intake.