I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Charli on July 20, 2009, 09:50:19 AM
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I've been doing manual PD for about 3 - 4 weeks, not bad at all. I would say I'm doing good with no major problems. I have bad back pain but I know it's from the weight of the bags (2000L). I'm wondering about body image stuff though. I am and have always been very self conscious. I'm 4"10 so I knew when the pd nurse said some people you can tell and some you can't that I would be the one that you could and I'm right. I can't stand the way I look now. I absolutely look 8 months pregnant (no kidding). My weight hasn't really went up, but my stomach area sticks out so much. None and I mean none of my clothes fit me. Shorts, pants, skirts that I wore before won't even begin to close around my stomach. I had to go get some maternity clothes to wear. No matter what I wear, hang out shirts, baby doll shirts, big shirts, the stomach still shows and there is no way to hide it. I'm so embarrassed and don't want to go anywhere. Anyone else have this problem and do you have any solutions at all???
Charli
Edited: Fixed error in subject line - okarol/admin
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I have this problem too. I am sorry I have no solutions - just moral support. I chose PD because I homeschool my boys and being away from home 3 days a week just wouldn't work - plus I'm not too keen on the needles if I can avoid them. I do hate that I have gained the weight but I knew it was a big possibility. I am thankful that there is an alternative for me to stay at home with my boys. I have been on the cycler for a few months but am going back to four exchanges a day on Wednesday because that is the last time I really remember feeling good - when I was on manuals. I am hoping that when I get my energy back I will start getting on my exercise bike and try to lose this extra weight.
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Sadly there is no answer to solve this , we all suffer from this ( i think us ladies find it harder to deal with) Im exactly the same as you ..only taller ! but very slim (was). I hate summer , in winter you can cover up with baggy jumpers so thats not so bad! Sorry but its one of the burdens of pd! I just try and think of the positives , mainly that it keeps me alive !
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Luckily (???), I've been fat all my life, so a big belly is nothing new to me. Perhaps it just seems bigger to you due to your small stature. If you're carrying 2000 ml during the day, that's 4.4 extra pounds (each 1000 ml is 2.2 pounds). I can't think of anything that can be done. You don't want to tighten that belly or there will be no place for the fluid to dwell. Hopefully things will get better for you over time.
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Wow - 4'10" and still 2000ml? That seems like a lot. I can understand your feelings. I am 5'7" and still have to 2000 so it's less noticeable on me. But the kids at school still ask me if I'm pregnant! Bless their little cotton socks given I'm a bit old ha ha. The only thing I can say is that you will get a bit more used to it as time passes. But I would talk to your neph about the possibility of putting less than 2000 in. If your numbers are all ok, it might be possible.
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Here is the solution:
Change to APD. Do the cycler for 9 hours at night and fill only 1000 ml during the day, if needed. I stay dry during the day, so I am a "normal" person during the day.
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Jie not eveyone does less volume during the day or is even empty though. I have 1800 extraneal in during the day .
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I do 2500 all night long and carry 2500 during the day. I'm 5 feet 1/2 inch.
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When I was doing PD, I had the same problem. I look 6-7 months pregnant. I couldn't wear any of my clothes, especially jeans. I learned to live with it for 1.5 years. I just went & purchased elastic pants or maternity jeans where the front looks like regular jeans & the back has the stretchy material. I purchased it from JC Penney, it works wonders. Now that I'm post transplant, I'm able to go back to my regular clothes. So glad I didn't give my old clothes away.
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Yeah, if there is no any residual kidney function, PD has to be 24 hrs. I have a choice of doing it during the day or during the night, so I started to do APD during night.
However, based on the results of PET test, one can make some combinations of time and volume to achieve the same level of KT/V, especially if the transport rate is not low. If the transport rate is low, options are limited.
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Sorry but i do APD ,i still have some kidney function, but still have extraneal in during the day regardless and im a high transporter. Not everyones the same and i dont think there are many people that go empty during the day .. lucky you!
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Your mileage may vary, but I unfill every day I do dialysis for an hour and a half to go to the gym. I concentrate on my core exercises for a majority of my non cardio. My Neph says the benefit of exercise out weighs the short time unfilled, but you will want to ask your doc. Ive found that keeping the abdominals strong will keep your stomach taught and also speeds up drain time a bunch. I have recently started a strength yoga class also, at 36 years old its taking a little more time to get the results I did in the past.
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I have always been athletic in that i have ridden horses all my life ( not just once a week!) and used to have a stomach like an ironing board before pd :'(
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I have been on PD for a fer months now and I had no idea My belly would get do large. None of the people in the video that I saw had a big belly. I still prefer this to Hemo. I have never done it but from what people say this is the best.
I have not gotten used to it and I don't think I ever will.
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I have noticed that my belly has gotten bigger, but it doesn't really seem excessive or obvious. Maybe because I was so skinny before, the extra 2 liters just rounds me out to a more average size.
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I'm one of the lucky ones I think. It only makes me feel about 4/5 months pregnant!
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EESH! I guess that's what I'm in for. I've never been super skinny or super overweight and I don't put too much emphasis on my weight, but my biggest fear when starting PD is that I will also look pregnant!
I'm 52, 147 pounds, greying hair, and I'm so afraid people will stare at me and say "Look at that old bag. Don't you think she's a little to old to be pregnant?"!!!!!
Other than that, I sure I hope I can handle it!
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Goofy,
You have about 9% residual kidney function and does not need much PD at the beginning. If you start APD right away, you will not need to do PD during the day. Just about 9 hours of cycler during the night may be enough. So you can be a normal person at least until your kidney function drops to very low. By then, you may have a transplant. Please examine your options with your clinic and choose the one that you feel most comfortable with. Your Pet test and Kt/V lab will provide you information to examine options.
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Most clinics will insist you do PD firstly , otherwise if you had a problem with your machine you couldnt cope , so at least if you are trained to do manuals and your machine goes wrong you are covered !
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My clinic belongs to these "most clinics" too. But it does not prevent me to start cycler on day one. Everyone will be trained on manual exchange. With a couple of days of training and a chart, manual exchange is a piece of cake. Folks at Baxter are doing a much better job to create a chart for manual exchange than for the cycler.
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I'm lucky in that my docs allow me to do all of my exchanges during the night using a cycler and then I'm empty during the day. I'm 5'4". Before PD I weighed about 120 lbs. Now after almost 6 years of PD and using dextrose solution every night, my weight has slowly crept up and I'm now in the 140 lb range. No amount of exercise has seemed to help me counteract the calories absorbed by the PD solution. However being dry during the day allows me to be able to wear "normal" clothes. An extra 20 lbs. means, of course, that I'm not wearing my pre-dialysis clothes but I also don't have wear maternity clothes either. I do have some kidney function still so that might help in my doctor's decision to continue to let me be empty during the day. I do 6 exchanges each evening/night with a dwell of 1 hr. 30 min each. My monthly labs are usually pretty good and my Kt/v for June was 2.41.