Fluid restriction is driving me CRAZY

[ilovesoda]

All my 22 years of life I've been a person who drinks a LOT. Water, juices, shakes, you name it. Then at 23 they told me I couldn't drink that much anymore. And as the years went by I had to cut out much more fluid. It's making my life so difficult!  I'm now 29 so that's 6 years of being thirsty all the time... How do you guys deal? It's really driving me nuts that everytime I see people with drinks I just stare at them with such longing and envy...

[jeannea]

I think fluid restriction drives everyone crazy. Do you still pee? That gives you a little more fluid.

[Angiepkd]

Fluid restrictions are the worst!  I had my kidneys removed, so every ounce I drink has to come off on the machine.  I have tried everything to quench my thirst but haven't found anything that truly works.  I mainly just chew on ice cubes and popsicles, and eat a lot of grapes.  Now my teeth hurt all the time lol!  If you come up with a solution, please let me know! 

[Weggy]

Have you thought about home-dialysis? It would allow you to be more lax with your fluid restriction since you can do dialysis daily.

I urinate about 600ml a day and I pull off ~1400mL a night with PD. I drink about 2.5L per day (some less some more). There are limits because I can feel the fluid overload if I drink too much. However, I tend to not really worry about fluid intake as much as I did on hemo. In-center hemo was watching fluid here and there. I felt really restricted since I was only getting treatment 3 times a week.

[BobN]

Fluid restriction is definitely one of the heavier crosses we have to bear.

Watch your sodium intake, both table salt and any kind of processed foods.  It will make you thirstier.

I also like working up a good sweat through physical activity.  Any kind of exercise will help.

You can at least replace the fluid you lose with a cold drink, as long as you don't overdo it.

[Joe]

I'm with Weggy. Doing PD I pull anywhere arom 1.6 to 1.8L a day as well as urinating about 500ml. I don't really watch how much I drink other than keeping a close eye on my weight. If it jumps up a lot, I adjust my PD fluid to pull a bit more off. Typically I don't have to do that as I keep pretty well balanced.

[ilovesoda]

Thanks for sharing everyone!

jeannea: Unfortunately I stopped peeing in 2009, and last June 2013 my heart got weaker so I can no longer tolerate fluid removal of 3 liters every session. I can only tolerate 1.5 liters, and that includes chest pains and so much stress to my heart. 

Angiepkd: I feel you sister! Since I don't urinate every ounce has to come off the machine too. I'm only allowed 500mL per day and that includes insensible fluid -- fluid from food such as rice, sauces, bread, etc.

Weggy and Joe: I've heard that peritoneal dialysis is more prone to infections? I haven't really discussed this option with my nephro...

BobN: I can't do physical activity since I'm bedridden (can't walk) due to hyperparathyroid bone disease...

Sigh... 500mL per day is just no way to live! 

[Weggy]

You can get infections with PD, but with proper care you can reduce the chance. I have been on PD for almost 1.5 years and I haven't had an infection *crosses fingers*.

However, you did state you are bedridden. Do you live with someone or have someone who could help you? I think it would be a challenge doing PD solo if you can't walk around since there are bags/boxes/movement involved.

Home-hemo is an option as well.

[ilovesoda]

Thanks for the info, Weggy.

My mom takes care of me. I believe one also has to have proper training for peritoneal dialysis, right? I'm just wondering though about the access... Is it like having an IV catheter on the neck? Where is the access located? Do you have to cover it up while bathing? Sorry too many questions.

[NDXUFan]

All my 22 years of life I've been a person who drinks a LOT. Water, juices, shakes, you name it. Then at 23 they told me I couldn't drink that much anymore. And as the years went by I had to cut out much more fluid. It's making my life so difficult!  I'm now 29 so that's 6 years of being thirsty all the time... How do you guys deal? It's really driving me nuts that everytime I see people with drinks I just stare at them with such longing and envy...

Get on Nocturnal dialysis, drink what you want and lose the control freaks.

[jeannea]

That sounds really tough to be bedridden on top of everything else. I guess you're stuck with sucking on ice cubes. I feel for you. Rant away.

[Joe]

My PD cath is in my abdomen. I shower, and don't cover it. I am really anal about doing exit site care every time I get it wet. Haven't had any problems with it in 2+ years.

[ilovesoda]

  I H-AT-E K-I-D-N-E-Y D-I-S-E-A-S-E !!! 

[ilovesoda]

Joe, I've asked some nurses about PD, most don't really recommend it. And I've read about it on Wikipedia, it sounds complicated, hehe... Thanks for sharing. Hope you don't encounter any probs at all now and in the future.

[Sugarlump]

I hear you...
I have hallucinations about a long tall glass of cider or a great big cup of latte....     

[Weggy]

Thanks for the info, Weggy.

My mom takes care of me. I believe one also has to have proper training for peritoneal dialysis, right? I'm just wondering though about the access... Is it like having an IV catheter on the neck? Where is the access located? Do you have to cover it up while bathing? Sorry too many questions.

There is training. The nurse at your center will give you 1-2 weeks of training (your mom would need this as well). In reality, it is not that difficult and it becomes part of your routine easily. The catheter is located on your abdomen. It can be on the left or right side. It is about 1 to 1.5 feet long. As for bathing, showering is ok, but taking a bath is not recommended since there is a greater chance of infection. I have never been a bath person so I can't comment if it is feasible.

Have you asked about home-hemo? You could do it everyday and possibly relax your fluid restrictions. Maybe someone who is on home-hemo could chip in some advice?

[Arcticat2000]

I agree with NDXUFan if it is available where you live. I get as much as 7 litres per 7 hour  session taken off . That's a lotta soda...or iced tea in my case.

[NDXUFan]

I H-AT-E K-I-D-N-E-Y D-I-S-E-A-S-E !!! 

I go to Indiana University, 120 miles one way to get away from those idiots at Davita.  God, they are awful.  Call Mercy Flight about having someone fly you to IU, they are a great clinic. 

[ilovesoda]

I hear you...
I have hallucinations about a long tall glass of cider or a great big cup of latte....     

Sugarlump:

Me? I have hallucinations of a gallon of Coke and an extra extra large fruit smoothie (melon and mango are my faves)!

[ilovesoda]

Weggy, Arcticat2000, NDXUFan:

Thanks for your suggestions. However, won't home hemo be stressful to the heart since you do it everyday? I had a heart attack in March 2011 and I can only tolerate 1.5 liters UF goal at most. Besides, the overall cost like the machine and other supplies would have to be considered, right? I'm not even sure if we have home hemo where I come from... In-center is the mode here...

[Arcticat2000]

Soda, as for me, my dialysts is in center. I also have had heart trouble, open heart in 2007, when I was  47ish.  My dry weight is 97kg. I usually weigh in around 100 to 104kg and I'm in my 10th year of dialysis. Good luck!   

[KatieV]

Weggy, Arcticat2000, NDXUFan:

Thanks for your suggestions. However, won't home hemo be stressful to the heart since you do it everyday? I had a heart attack in March 2011 and I can only tolerate 1.5 liters UF goal at most. Besides, the overall cost like the machine and other supplies would have to be considered, right? I'm not even sure if we have home hemo where I come from... In-center is the mode here...

From what I heard, home hemo could be LESS stressful to the heart because you are doing it every day (most do it 5 or 6 days a week).  Therefore your fluid and toxin levels don't get as high.  I can usually only take 2.0 liters UF off before getting bad headaches.  If I have a "fat" day, I don't stress about taking more off to reach my dry weight because I'll be doing dialysis the next day.

[Weggy]

Weggy, Arcticat2000, NDXUFan:

Thanks for your suggestions. However, won't home hemo be stressful to the heart since you do it everyday? I had a heart attack in March 2011 and I can only tolerate 1.5 liters UF goal at most. Besides, the overall cost like the machine and other supplies would have to be considered, right? I'm not even sure if we have home hemo where I come from... In-center is the mode here...

From what I heard, home hemo could be LESS stressful to the heart because you are doing it every day (most do it 5 or 6 days a week).  Therefore your fluid and toxin levels don't get as high.  I can usually only take 2.0 liters UF off before getting bad headaches.  If I have a "fat" day, I don't stress about taking more off to reach my dry weight because I'll be doing dialysis the next day.

That's what I thought as well. PD is kind of the same concept. I pull roughly the same amount per week as I did when I was doing in-center, but I feel a lot better than I did than in-center.


As for supplies/machine, your insurance should cover it the same as in-center.


Nocturnal could be an option as well if you have a center in your area.

[Simon Dog]

Besides, the overall cost like the machine and other supplies would have to be considered, right? I'm not even sure if we have home hemo where I come from... In-center is the mode here...

Assuming you life long enough to amortize the training expense, home hemo is reportedly more profitable to the center since you do not occupy a chair for 12 hours or so a week.

Also, there are multiple choices for home hemo protocols.  I am on an every other day conventional plan (baby k), and take a bit over 2L a treatment - even less when I run two days in row as I often do (Sat-Sun-Tues-Thurs) to minimize the number of days I dialyze after a day at rowk.

[kit78]

Quench Gum really helps when you are really thirsty.  Get at Dick's Sporting store (call first)  or Amazon.com