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| | From:  emk748 (Original Message) | Sent: 11/1/2007 3:09 AM |
Hello
I have PKD and have now been referred to start peritoneal dialysis in the next month. I've been at late stage kidney failure for the last year. Although I knew that this step would come it is still a big adjustment. I thought some of you might share some information; for example is weight gain really an issue? Does it hurt? How did you adjust to the idea that this will be forever? Thanks for your help. Mary |
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I started peritoneal dialysis this past May. I will try to answer your questions as best as I can. There is about a 4-5 lb. weight gain in your belly. I haven't really gained any other weight other than the fluid weight that is put into my abdomen. Does it hurt? The surgery is actually not bad at all. I took Vicodin for a day or two and that was it. You will have two incisions. One where they put the scope in and the other where they insert the catheter and then of course the exit site that the catheter comes out of. Surprisingly the exit site didn't really hurt at all. The incisions were a little sore. But recovery was about a week before you didn't really feel anymore pain at all. I would recommend that you purchase the bands to put your catheter in ahead of time. It just makes it a lot easier to tuck your catheter away and also it is less likely that you will accidentally tug on the catheter. The exchanges that you do are not really painful. The only discomfort that I have had is towards the end of the draining stage my stomach will start to cramp and hurt because that is basically telling you that you are done draining. Once I feel that pain I k now that I am pretty much done. The fluid doesn't hurt going in and if it does cause you any discomfort just lower your IV pole down so the fluid goes in slower rather then faster. The other thing that you can do to avoid this is by turning the cap on your catheter set to control the rate at which the fluid goes in as well. As far as adjusting to this as f orever. Just think of the alternative and then this doesn't seem all that bad. You can still do everything you did before. And nobody can look at you and think oh she's sick and she's on dialysis. We look like normal healthy individuals. The one negative that did bother me was that I was fairly thin and people who don't know me have thought that I was pregnant because my belly was enlarged. I got over it and now I just try not to wear anything too tight around my abdomen. Those cute tops that are in right now work great. Well good luck with everything and if you there are any other concerns I'd be happy to help you out. Christine(Fullerton, California) |
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Reply
| | | From: lbinki | Sent: 11/2/2007 2:36 AM |
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Hi Mary
I was on pd for some years and it was a great choice for me. It doesn't
hurt at all just makes your tummy full. You have a choice now of doing it at
night...and having the day free. I did exchanges every 4 hours...carried all I
needed with me. You just have to be extremely careful having clean hands and a
mask always. I felt very good on pd too. Nothing is forever* I had a transplant
after a while and am doing very well. There are ups and downs of course but
doesn't everyone have those hills and valleys? Im just so thankful there are
choices now...Its an adjustment for sure but its great to be here with all my
children and husband and enjoy everyday...loving them.
Im so glad you found this site...there are wonderful people here that will
give you so much of their life experience as well as information that would take
you days to find. Its a home away from home. A safe haven with people who care.
Welcome!
love
linda
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good advice missy , i am on CAPD and would offer that same advice.. ----- Original Message ---- From: misschris33 < [email protected]> To: Polycystic Kidney disease chat & community < [email protected]> Sent: Thursday, November 1, 2007 6:23:13 PM Subject: Re: Starting CAPD
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Starting CAPD
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From:
misschris33
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I started peritoneal dialysis this past May. I will try to answer your questions as best as I can. There is about a 4-5 lb. weight gain in your belly. I haven't really gained any other weight other than the fluid weight that is put into my abdomen. Does it hurt? The surgery is actually not bad at all. I took Vicodin for a day or two and that was it. You will have two incisions. One where they put the scope in and the other where they insert the catheter and then of course the exit site that the catheter comes out of. Surprisingly the exit site didn't really hurt at all. The incisions were a little sore. But recovery was about a week before you didn't really feel anymore pain at all. I would recommend that you purchase the bands to put your catheter in ahead of time. It just makes it a lot easier to tuck your catheter away and
also it is less likely that you will accidentally tug on the catheter. The exchanges that you do are not really painful. The only discomfort that I have had is towards the end of the draining stage my stomach will start to cramp and hurt because that is basically telling you that you are done draining. Once I feel that pain I k now that I am pretty much done. The fluid doesn't hurt going in and if it does cause you any discomfort just lower your IV pole down so the fluid goes in slower rather then faster. The other thing that you can do to avoid this is by turning the cap on your catheter set to control the rate at which the fluid goes in as well. As far as adjusting to this as f orever. Just think of the alternative and then this doesn't seem all that bad. You can still do everything you did
before. And nobody can look at you and think oh she's sick and she's on dialysis. We look like normal healthy individuals. The one negative that did bother me was that I was fairly thin and people who don't know me have thought that I was pregnant because my belly was enlarged. I got over it and now I just try not to wear anything too tight around my abdomen. Those cute tops that are in right now work great. Well good luck with everything and if you there are any other concerns I'd be happy to help you out. Christine(Fullerton, California) |
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Mary, There are also two options for where you have the PD catheter placed. One is abdominal, generally near the panty line (you'll probably need "granny pants" from now on). The other is a pre-sternal catheter, which is placed in the lower wall of the chest (center) and burrows down into the abdomen. The latter is less common, but some people find it's easier to deal with and there is less chance of it getting tied up in clothing (it's not placed on the bra line) or hanging down and interfering with some bodily functions (some people find they need to move the abdominal catheter out of the way when they need to urinate, etc.). You may want to consider talking with the surgeon/doctors about options for catheter placement and which location would work best for you, taking into consideration your personal habits and any limitations you may have with hand dexterity and motion too. Although I'm not on and have never experienced dialysis, I have a number of friends who have been/are on PD and they find it's an outstanding option and gives them so much flexibility for movement and travel. And if you get on a cycler so you only dialyse at night, your days will be free to do what you please! Also remember that the companies that deliver the supplies will deliver them anywhere in the country, so if you're planning a trip, you don't need to tote the fluid with you; it can be delivered right to your hotel or family/friend's home! And the cycler is portable, comes in it's own bag, and goes as carry-on luggage so you'll always have it with you. Best wishes! Ruth PS None of the folks on PD I've met have poochy stomachs, so weight gain seems to be invisible to the general public even if you're carrying around fluid. The diet is more flexible with PD as well, another benefit...more food and fluids!  |
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