Starting Dialysis Next Week

[AnnieB]

Well, it's been awhile since I've been on here and my kidneys have been continuing to decline. Long story short, I just started feeling so crummy that I have decided to start dialysis next week. The thing that I am mostly dealing with right now is the $%&@# fluid restrictions. When I talked with the dialysis nurse she told me I should try to restrict myself to 1 and a half liters a day...a difficulty I never appreciated until I started trying to do it. I think this is going to be the hardest part of the whole process for me. Does anyone have advice or tips on how to make this less painful, or even realistic? Because when I look at how much liquid I am going to be allowed I am wondering if I will be able to do it at all.   

Anne

[kickingandscreaming]

PD has a LOT fewer restrictions on fluid (and food) and is better at preserving urination.  Not sure if or why you have considered and rejected that, but it would make a difference in your freedom.  I drink quite a lot, especially when it's over 90 degrees for days in a row.  I think I would have a lot of trouble restricting to that little fluid.  All forms of D suck in their own way, but I think PD sucks less.

[AnnieB]

I did think about PD, but there were a couple of problems. One is that I don't have space for the supplies, since my apartment is not that large. Another is that I have concerns about the amount of time spent doing exchanges, plus possibility of peritonitis (I have GI problems anyway). But I may change my mind if HD really blows.

[cassandra]

Sorry Annie, I can only think of drinking from small cups, cold drinks from small wine glasses. Stick ice in those so you might drink less fast. When I am out I'll ask for an espresso, or spirits, or I just leave 90% of the drink. It will get easier over time.

Nice to see you back, sorry that it's because of starting D.

Love, Cas

[kickingandscreaming]

I did think about PD, but there were a couple of problems. One is that I don't have space for the supplies, since my apartment is not that large. Another is that I have concerns about the amount of time spent doing exchanges, plus possibility of peritonitis (I have GI problems anyway). But I may change my mind if HD really blows.

I live in an apartment and there is always a corner to stick a box or 2.  Baxter will also make half deliveries for situations like yours. I don't have a long track record to speak from (only on PD since January), but I have come to think that if you have reasonable manual dexterity and can keep your wits about you and make sure to keep your hands clean when handling your PD connections, the risks of peritonitis are not that great. And once you graduate to the cycler over night, it really doesn't take up much time at all since you have to sleep anyway.  The problem with HD is that it dries up your ability to produce urine much more quickly than PD, and residual renal function is a big plus.  In my opinion (having done both) HD blows much more than PD and takes up a lot more time and it's not quality time.  It's absolutely mind-deadening time.  The bad thing about PD is that it is time limited as the peritoneum eventually fails, and then you HAVE to go into HD unless you get a transplant.... or sign yourself into hospice as I will probably do when PD stops working.

[Fabkiwi06]

Ice. I will have an ice cube or two if I'm feeling thirsty. I actually went ahead and measured, and my ice maker make cubes that are about a tablespoon of liquid. Sometimes, that's enough to satisfy it... but if it's not then I'll have a small glass of something.

Although it's not what my nurses recommended, I have better luck if I try to drink only at meals and something before bed.

[Simon Dog]

In my opinion (having done both) HD blows much more than PD

Done both.

You are correct.

[Michael Murphy]

You are correct the hardest part of my first 6 months on dialysis was fluid control.  What eventually saved me is my nephrologist finally believed me that I had enough. Residual Kidney Function  that I eliminated fluid the old fashioned way and he removed my fluid restriction.  But during that 6 months I learned a few lessons. The first is salt is not your friend. Salt makes you thirsty, avoid it at all costs, if you are drinking because your mouth is dry use a spray bottle, less fluid and it actually fixes the problem with less fluid.  Measure every thing.  One last thing if you still urinate the rule should be 32 oz. of fluid over your output.  Fluid control is important. The more fluid they remove the worse you will feel after dialysis.  Good luck with your start, I will tell you that in my experience the worse thing about starting dialysis is the fear of the unknown.  I was terrified my first time, the actual experience was easier then the fear I felt going the first time.  The good news is you will feel better after treatment.

[Hazmat35]

PD has a LOT fewer restrictions on fluid (and food) and is better at preserving urination.  Not sure if or why you have considered and rejected that, but it would make a difference in your freedom.  I drink quite a lot, especially when it's over 90 degrees for days in a row.  I think I would have a lot of trouble restricting to that little fluid.  All forms of D suck in their own way, but I think PD sucks less.

GOOD LUCK WITH YOUR DIALYSIS.....I started out with 32 oz. of fluid a day.  My Nurse told to get a measuring jar and every time I had some "liquid" put it in the jar and measure it; and when you get to 32 oz.; I was done for the day. 

so I got a few glasses that I regularly use; and measured how much fluid was in them....so I would know......one cup of coffee in the AM.; was 8 oz; 2nd cup 8 oz; and now I'm 1/2 way done for the day already.  And Ice Cubes help; out of the fridge; the ice maker is about 1 tablespoon; so if I"m thirsty; I just run and get an ice cube. 

It isn't that difficult to slow down the fluids; just remember; the more you have to take off...the worse you will feel. 

[Charlie B53]

I have to admit how Blessed I feel to be doing well on PD and NOT have the fluid restrictions that many of you have.

Many of you have been doing this long enough you have made the adjustments become a sort of necessary second nature, so it doesn't seem near as difficult to you as this may be to a beginner.

[LorinnPKD]

I'm on dialysis but I don't have fluid restrictions yet due to some remaining function.

My dad, after both kidneys were removed, had some great tricks, though:

- Drink out of tiny juice glasses.
- Chew on ice.  Sonic ice is so good and you can buy a bag of it to keep in your freezer!
- Try to get into a daily rhythm of drinking, where you can pace yourself.
- And the best one: He would often just get some ice-cold water and rinse out his mouth several times a day, which made him less thirsty and didn't add anything to his fluid intake.  It's pretty refreshing.

I've also heard that now some gels are available.  You take a tiny bit of the gel and it makes you less thirsty.

The very sweet gentleman who sits next to me at the clinic regularly goes over his fluid limit and he is always in a world of hurt during our sessions.  I will be on fluid limits someday and watching him had made me vow to be VERY careful to avoid what he is going through.

[LorinnPKD]

Also, if you are passing any fluid AT ALL you should be able to loosen the restrictions.  I'm not sure if that's the case with you, but if it is, your dialysis nurse needs to know.  (I pass fluids still and my orders have been to drink, drink, drink to keep my remaining function working.)

Good on you for making the jump to dialysis, by the way.  I just started a few weeks ago and it is helpful to me to know that others are starting just like me.

[Michael Murphy]

I would point out that in the beginning everyone assumed that since I was overweight I must be retaining fluid, I was told to restrict my fluid intake to less then 40 oz. and every session they began takinhn2 or 3 kilos of fluid from me.  I left dialysis feeling like 30 miles of bad road.  After about 2 or 3 months of this I had a nephrologist appointment and they took my BP and it was 75/45. Panic began and I was sent to the emergency room to get 2 liters of saline.  Still low but I went home ama and went to bed.  I got a call from the nephrologist to remove the fluid restriction.  Now once a month I have a digital scale that measures in grams and I use a large plastic cup and I weigh my output. s long as the input matches the output I have no fluid restrictions. And the day they don't match my fluid amount will be 32 oz. above my output.  The dialysis industry is sort of set up with a one size fits all in my case there was evidence that I was ok on fluids but was treated as if I had a problem.

[AnnieB]

I am still peeing a lot, actually....and the nurse told me about restricting to 1 1/2 liters even after I told her. Yesterday my output was about 2 L, and today so far my input and output are evening out. When I tried to restrict yesterday, I just felt super dehydrated which didn't help. Do you think she was being premature with the fluid restrictions? Maybe I need to ask my neph.

[AnnieB]

I called in to my neph. They told me that right now I am not on fluid restrictions, just don't overdo. When I start next week, he said I should try to stay within about 1800 a day. I have a 4 day reprieve, which I think calls for an Orange Julius.

[LorinnPKD]

Oh, that's great news that you're still peeing!

I'm finding sometimes dialysis nurses seem to be one-size-fits-all since so many of us DO have the same restrictions.  I was told by a nurse to watch potassium and fluids, but my potassium is weirdly low (they actually had to ADD it to my feeds since I was so low!) and fluids are fine.

And since you're still peeing, your doctor may have you skip taking fluids off (aka ultrafiltration).  Every time I am on, I ask to make sure they aren't taking any off -- sometimes they are and I have to correct them.

You have to be your own advocate, but that is a good thing!  Enjoy that orange julius!

[Michael Murphy]

I have one to two kilos taken off at every session both my nurse and Doctor want it. Since I dont use heparin they do a 100 ML flush every half hour plus I drink about a half liter of fluid during the session .  But if you still have to go dialysis will be easier for you.  I have great labs usually so I don't have most of the problems of dialysis, the one caution is to watch out and make sure your function meets your input.  Retaining fluid will put you in the hospital.