unusual reaction to CAPD

[miker]

Hi everyone,

I joined this site about three years ago just before starting on CAPD.  I had been diagnosed with MGN in 1998 and my kidneys lasted a good ten years before my specialist decided it was time to start dialysis, I chose CAPD as it seemed the most flexible option as I wanted to carry on full time work. For the first six months I was able to dialyse in my office at noon and at the end of the day. After 6 months I was given a cycler machine and that has gone very well until I had an unusual reaction to the dialyse fluid a few months ago. It is called encapsulating peritoneal sclerosis - essentially you small intestine collapses into a fibre enclosed ball and stops working.  After spending a month in hospital; having every conceivable test to find out what was wrong, unsuccessfully, they were left with no alternative but to operate. It was their last option as they were reluctant to operate initially as it would mean the end of peritoneal dialysis.  As it turned out they discovered my compacted small intestine and spent 5 - 6 hours putting it out and removing the fibre which enclosed it. Apparently it is a reaction that normally occurs when people have been on CAPD for a long time adn when the dialysis itself is failing, strangely my dialysis continued to work perfectly.

I am now a haemodialysis patent, I think this is about my fifth week.  It's going fine although heading off to the hospital where our dialysis centre is and spending five or six hours staying in one place  takes some getting used to, although I am able to take my lap top and thankfully the battery lasts more than five hours.  Also I'm getting to meet a new group of people, both patients and nurses, which is fun.  I'm looking forward to getting my fistula after which I hope to start training in order to get a home machine. Don't know how long that will take.

Regards

Miker

[Deanne]

I'm sorry you've been through such a rough time! A month in the hospital - ouch! Have you been able to return to work? You have a great attitude!

[miker]

  Hi Deannne, thankfully I have a very supportive workplace, a small agency, and started by working half days over the last two weeks. I will probably be back full time after the holidays. At the moment my dialysis times, weekend, night and late afternoon, don't really conflict that much with work and given that a lot of my work is writing, researching and answering email queries I find I can carry this on while dialysing. So far so good anyway.

Miker

[natnnnat]

It is called encapsulating peritoneal sclerosis - essentially you small intestine collapses into a fibre enclosed ball and stops working.

jeez miker, that sounds really painful!