I will be getting a peritoneal tube in the next few months. Any advice from users

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I know there are different types of dialysis, but need more information about pros and cons from users

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  • Posted

    Hi Linda

    I was on haemodialysis for one long month. Negs are that I went to a clinic in the San Francisco Mon, Wed and Thurs for several hours and effectively lost three days a week to it. Hard to work and very depressing environment surrounded by people in a zombie state and/or waiting to pass. (With some exceptions). Then I was on peritoneal for 15 months and it was way better. Gentler, dialyzed at home every night, freed up to work or whatever every day etc. Downside - cos I was being pumped with dextrose solution every night which added approx 1,000 calories to my daily calorie intake, i gained 70 pounds prior to my transplant! Unprecedented in my 60 something life. Still peritoneal much better than hemo IMHO. Hope this helps.

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    • Posted

      Michael,

      I'm real concerned about both weight gain and A1C control with PD. (I'm a type II diabetic. My A1C is currently very well controlled coming in at 4.9 or 5.0 every three months. And this is with no medication. But I'm concerned about maintaining that with PD.) 

      My nephrologist  has said that not all people on PD gain a lot of weight. And he doesn't seem to have any serious concerns about my diabetes management on PD. 

      You may not be a diabetic, but if you are, how did you manage your glucose levels? And also, how did you keep your weight low enough to qualify for a transplant? I only eat a 1200 calorie diet a day now and already struggle to manage my weight effectively!!

      Thanks,

      Marj

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    • Posted

      To be honest Linda I didn't change the kind of diet I'd been on for years already. My diet has always been pretty healthy as follows: minimal sugar intake so hardly any sugary, desserts, cakes pastries etc. Everything organic (fruits, veg, minimal amounts of red meat, lots of fish). Regarding liquid intake, lots of filtered or bottled water, tea, coffee and, yes, continued to drink alcohol. Mainly gin as it has little sugar and less than wine or beer. Basically I went to the hospital nutritionist and when I realized that my pre dialysis diet was pretty much the same as she was saying my dialysis diet should be I stopped going to see her. i hope this is encouraging for you. Food and liquid intake on dialysis was not a burden for me at all thank goodness. That said it may be different for others on dialysis. Remember the doctors sometimes err to an extreme on the side of caution!

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  • Posted

    I'm not at that stage yet myself but my dad had that type of dialysis.. I've been told I can't have that 1 as I've had my womb removed ( unsure if correct)... but I don't think I'd opt for it.. my dad had to drain out/in abt 4 times a day... awkward if your out for the day... and needed a clean sterile room at home..but no going bk n to to the hospital... I'm sure there's good n bad points on all... good luck...x

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  • Posted

    Hello, Linda. I can understand your wishes, and both systems, although life-prolonging, have their downsides.

    If you opt for P.D. you will need a lot of storage for the medications, which you will need to take, via a tube into your tummy, four times daily. This makes work and travel difficult -- but certainly not impossible.

    Often, P.D. patients will need to transfer to H.D. if they are unable to find a donor kidney

    H.D. -- unless you have the room at home for a dialysis machine and can get one installed, will necessitate your going to a Renal Clinic three times weekly. You should, in reality, count this as a whole day's work -- and you never get a day off, however bad you might feel.

    Michael also makes an excellent point about the condition of some of the patients you will be sharing several hours with every week.

    You have a tough choice. God bless you and help you make the decision that is right for you.

    bert

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  • Posted

    Both my husband and I did not want the peritoneal installed on him. He decided on a tempary tube on his chest. Very easy to take care of, but the dialysis units prefer the permanent one on the arm. He asked if tempary one was ok for long term and was told yes by the radiology department.

    Just stand your ground on your decision it is your body not there's. Do your research on the peritoneal, we did and decided against it.

    good luck and God Bless you.

    Deborah

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