Fluid Overload --- Still Battling

[Bub]

Karol, thank you so much for your kind email and your concern. It was so nice to have one of my IHD friends do a "welfare check" on me!

I am well but still having so much trouble with fluids.  I am making progress and have redoubled my efforts, but am still showing up 6 and 7 kilo's over.  I can take that much off but it leaves me washed out even the next day which really interferes with my work.  Oh for the days when I would show up only 1 or 2 kilo's up.

I have long been interested in nocturnal dialysis but took no action over loyalty to the center I started with.  But incidents lately have led me to believe that my loyalty was misplaced, so I am arranging a tour of the one facility in my community that offers nocturnal.  Its a Davita center and I have heard a lot of good things and bad things about Davita, but I am a big boy and can stand up for myself if needed, so we will see.  I will keep you informed.

So thank you to Karol and others who thought of me and worried about me.  Makes me feel good about myself.

[monrein]

So glad and relieved to see your post today Bub.  Keep up the battle of the fluid and nocturnal sounds good.

[*kana*]

Bud,
I think of you often and you make me very worried!  I know that you struggle with the fluid and not sure if you have or ever considered PD.  I find that I am hardly thirsty and I can drink far more on PD then hemo.  When I was on Hemo I wanted to drink lots, now I have to force myself to keep from getting dehydrated.

Take care of yourself and know we are here to like you and help you!   

[KICKSTART]

Bub , i am the last person thats wants to be harsh , so i apologise now . But if you are taking that much off , then you are putting it on ! It doesnt appear by magic , you are not controlling your intake , sorry mate but to be so overloaded sounds like you are drinking as normal , and you KNOW you just cant do it. Just incase you are fooled dont think PD gives you liberty to drink as much as you want it doesnt , i know i did it for 5 yrs !  Hemo is slightly worse but only because you are watched more closely.

[RichardMEL]

Bub I'm very glad to see you post again as I was quite worried the fluid overload had caused something serious. Phew.

So getting down from a max of 14 over to 7 over is a good start, but you need to at least halve that again. Think about the size of drinks you are taking and when you are drinking. I know it is so horribly difficult and requires will power, but the way I think about it is "no pain no gain" - with the bonus of no cramps and I won't be totally washed out tomorrow when I need to be out doing stuff. Also consider your salt intake in foods which will add to the fluid retention.

Like I said you've halved your intake which is a mighty effort!! Perhaps you need to take the step of filling up a 1 litre bottle with water and in a day ONLY drinking from that. When it's finished.. that's it. NO MORE. Do that for a bit and you will get the idea of how much you should be drinking.

(note: that 1L value may vary depending on how much(if any) you output in urine - the basic rule is 500ml plus whatever volume you output) but I think whatever you output trying 1L/day might really help you out to get the fluids under control. Also remember that stuff like ice cream, soup, custard etc all count as fluid....

good luck, and good to know you are doing "OK"

[lizabee]

I'm not on noctornal but I do go to a Davita and I have had no issues at all, I really like them...good luck!

[paris]

Good to see your post, Bub.  You have people here that care about you and worry when we don't hear from you.  Sounds like you are working at getting your fluid intake down.       Keep up the good work.   

[murf]

I put my reasonable fluid control to Pavlov's dog. I felt so crappy after taking off too much fluid that I am loathe to do it too often. BTW: Pavlov experimented with a bell to train dogs. Similarly with hemo, I have been bitten once to often to repeat the indiscretion. 

[Jean]

Glad you are back Bub, we were getting worried about you.

[RichardMEL]

Murf - that's part of what keeps me on the straight and narrow. The pain of cramps and the horrible effects of a crash are incentive enough to keep my fluids down - quite apart from the understanding I have that I do not want to overload on fluid because of how bad it is for the heart and lungs and just my body in general.

[Rerun]

Nocturnal may relieve some of your fluid issues.  If you do have 4 or 5 kilos to take off you will be taking them off more gradually over 8 hours instead of 4.  It is just better for you if you can learn to sleep in  the Star Ship Enterprise.  You will know what I mean if you do it.

                             

[hurlock1]

Bub,
During the week, I only drink water, out of the tap. At this time of the year where I live the water is cold, and it tastes good. I take a big sip and spit it out into the sink. I only let a little go down my throat. I still come in with 3 or 4 Kilos over. I guess I could deprive myself of any liquid, but I have found that if I feel deprived of anything it's only a matter of time before I go hog wild and forget about any restrictions I may be trying to put on myself. For a while I was getting "bottled water"; Dasani, Aquafina, Arrowhead etc., So I would know how much I was drinking, but, I guess because I was paying for it, or because it tasted so good or for whatever reason, I couldn't spit it out and I would drink the whole bottle outright.
During the weekend, My Grand-kids come over and They have apple juice, Hawaiian Punch, Sunny D. When I pour them a cup, I pour myself some too. On Monday, I come in sometimes at 5 kilos over.  I pay for it. There are a lot of ways to take that dry feeling out of your mouth. They have gum and mouth washes specifically designed for people on fluid restricted diets. None of them work for me. I always want to get some water to wash down the taste out of my mouth. !4 kilos of just water is equivalent to 14 liters. Close to 3.5 gallons. One way or the other, for a normal person 3 and a half gallons every two days is a lot. You don't have to "battle"  fluid intake. You have to trick it. Stop drinking Koolaid. Drink water. Take a sip and spit it out. Your body isn't ragingly thirsty, It's your mouth. The human body is 98% water.

[RichardMEL]

good advice there. I love fresh tap water it's lovely. What I do is keep a bottle of tap water in my fridge all icy cold. yum!

Another thing is that some drinks.. well for me anyway... make you more thirsty - like if I drink something lemon, or sometimes even a cup of coffee or something.. so you've had 250ml of fluid and you feel like more! So I try and limit those kinds of things too.

sucking on ice cubes might also be an option.

[billybags]

Bub so pleased you are back with us. You take care of your self.

[MissyKew]

I suck on ice cubes, but I miss water and sometimes can't help myself drinking it.  I have well water too and it is coming cold now and it tastes soooo good.  i used to drinks several big hospital cups of water a day.  So hard not to nowadays.