I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: catmom on September 22, 2009, 12:23:24 PM
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I am on PD and doing 4 manual exchanges daily. I have been told that the minimum amount I can do is 1500ml but I am very uncomfortable with that amount and am wondering if anyone has reduced the fill volume they have been told is their minimum? I am very petite and when using this amount look (and feel) like I am 6-7 month pregnant and have even resorted to wearing maternity clothes. I tolerate a fill volume of 1000ml very well.
Thank you for any advice.
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I'm pretty small too. My first few months, I did 1000 ml fills during the day, and 1200 at night, since it's easier to hold that fluid when you're lying down and not moving. I always felt full with 1000, but when I got on the cycler I was encouraged to bring the volume up. I started doing 1200, and at night that was tolerable.
After I found out my Kt/V was too low, I was told to try increasing my volume more. I went up to 1400, then 1600, then slowly crept up to 2000, increasing by 20-50 ml each night. These days I'm dry during the day, but I just finished 21 days of antibiotics where I had to carry 1000 ml all day - it felt like nothing now. In the evening I fill with 1500, and at night I hook up and fill with 2000 over the night.
I'm surprised at how much my peritoneum stretched out and "got used to" the bigger volumes. Last year, I could hardly hold 1500 without feeling terribly full. Now, I've held more than 3000 ml and not realized it.
It'll just take time. Ask if you can start where it's comfortable, maybe 1200, and slowly increase it. Each day, bring it up another 50 ml. In a few weeks, you could be up to 2000. If they insist that you won't be getting sufficient dialysis on amounts smaller than 1500, ask if you can temporarily do more exchanges per day, until you "stretch out" to accommodate 1500 ml.
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More fluid = better dialysis. Sadly its like that for us all to start with, you feel full , bloated etc. You will get used to it bit by bit and we all look pregnant!
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Thank you all for the information. I forgot to mention that I still have some kidney function and produce a normal amount of urine-not sure if this matters. The biggest problem, aside from hating the fat belly, is that it just seems like there is not enough real estate in my torso. I have constant heartburn and mid-back pain. Compounding the problem is that I take Plaquenil for Lupus and that makes you queasy so all this activity in my abdomen enhances the nausea to the point of vomiting. Maybe time to try the cycler again...
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I have been told that the minimum amount I can do is 1500ml but I am very uncomfortable with that amount
How long had you been doing 1500ml? When did you switch to 1000ml? What does your nephrologist say?
Fact your peeing makes this an interesting question. I should I ask my friend to ask his "people". Good luck with it.
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Ech, I remember that. When my kidney function got bad enough that manual dialysis wasn't doing it for me anymore, sometimes I'd feel so sick that just doing an exchange was enough to make me vomit. Kinda hard to run to the toilet when you're hooked up to an IV pole. ::)
1000 ml four times a day was enough for me when I still had (relatively) better kidney function, and I was peeing a normal amount. Once that started to go away, 1000 ml wasn't enough.
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For manual exchanges, they want the patients to use all solution in a bag. However, I think it is not necessary to use up all solution. The bag can be hanged on the scaler and filling can be stopped when a certain amount of solution has been used. It just needs to use a similar amount of solution each time.
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The fact that you still pee is a good thing; however, what is your GFR? I also still pee a bit, but my GFR is 7, which means my kidneys are only removing 7% of the 100% of toxins in my body, and only a limited amount of the fluid. Perhaps you would be better able to handle carrying more dialysate if you use the cycler at night. Just a thought.
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Like Restorer said, you will eventually get used to it. I started with the 1500 and now using 2500 during the day and 3000 at night. Neph wants me to add another 3000 in the day and I will slowly work up to that. I thought 3000 wouldn't be much of a problem now that my football sized kindeys are gone, but it still is a bit uncomfortable.
best of luck
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Like Restorer said, you will eventually get used to it. I started with the 1500 and now using 2500 during the day and 3000 at night. Neph wants me to add another 3000 in the day and I will slowly work up to that. I thought 3000 wouldn't be much of a problem now that my football sized kindeys are gone, but it still is a bit uncomfortable.
best of luck
wow that's huge... up till recently i was day filling 1.2 litres of extraneal. the nurse recommended it becuase (when pd was working great) i was over dialysing and my potassium etc was a little low
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Took me ages to get used to the bloated feeling. For the first week, I continually threw up, then felt nauseous for the next couple of weeks. Suffered badly from reflux so the GP gave me medication called Pariet. Been great since. Now I'm starting to put on weight. Can't win with renal failure.
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I'm developing leg pain, and I was wondering if anyone else had that complaint - I suspect it may be from carrying around the extra weight during the day. I am on the cycler at night (began in September) and do 4 fills of 1800 ml. My last fill in the morning is 1500 which I carry all day.
The leg pains have been very disruptive. They started in one thigh. My calcium is within range and phosphorous is 5.7. They even did a test for muscle enzymes to make sure my statin wasn't causing the pain. My nephrologist said I should have a CT scan to make sure there isn't a femoral hernia (a hernia just above the thigh from the peritoneum being stretched). I haven't made the appointment because the pain has moved to my knee and down the back of the leg.
Anyone ever had these complaints?
Pete
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long overdue update -- had avascular necrosis in the hips, requiring two hip replacements. One went badly -- sciatic palsy, paralyzed foot, and this from one of the top orthopedic surgeons at Brigham & Women's in Boston - one Dr. Estok.