How we chose and adjusted to dialysis - it's not the end of the world!

Hi, My husband (D) is 70 and has end stage renal failure. As he is new to dialysis I thought I would share our experience of choosing and adjusting in case other people find it useful.

As any decisions would affect both our lives we made them jointly with the help of EXCELLENT information and support provided by staff at Liverpool Royal Hospital.

Seven years ago D was diagnosed with renal failure with an RKF 15%. We were told he would probably need dialysis within 12 months and he was fitted with a fistulla in his arm in readiness, an op involving cutting open a vein under general anaesthetic. D had a bad reaction during the op as the fistulla burst but medics sorted it out and D recovered well. However despite working 3 days a week travelling 30 miles each way, becoming a lot more tired and getting cramps and itchiness, his kidney function declined very gradually and it wasn't until March 2012 that medics suggested it was time for dialysis - his RKF was 9%. A transplant had already been ruled out due to his age and his large aortic aneurism which would put his life at risk, also lack of a suitable donor.

As D had the fistulla we considered haemodialysis in hospital but immediately ruled it out due to the time involved and disruption to his working routine and income. We then considered haemo at home but felt the equipment would make home feel like hospital, a particular issue as the special flooring (to protect from leakage) and drainage through the wall would make the house less saleable and we wish to downsize in the near future.

So we decided upon peritoneal dialysis and within a few weeks D was fitted with a canulla through his stomach wall into the peritoneal. The op was minor under a local anaesthetic with no ill effects. D has now been on CAPD for six weeks and the routine has become a part of our lives with minimal disruption to the house and minor adjustment to our lifestyle.

With CAPD fluid is drained out through the canulla and fresh fluid drained in. D finds each fluid exchange takes 50 minutes and he does four a day - first thing in the morning, lunchtime, tea-time and before bed. The routine suits him as he does the first exchange very early, drives to work missing the rush hour and is home by midday in readiness for the next exchange. At first he found that routine wearying but after a short time settled into it. Sufficient space is needed to store all the fluid bags and other bits and pieces (scissor clamps, cleansing gels, dressings, etc). We are lucky enough to have a double garage so each month a driver from Baxters uses a fork lift to put a loaded pallette straight into the garage, a five minute job. If we didn't have space the driver would carry all the boxes into the house and put them wherever we wanted, even in the attic, and if we both worked they would keep a key as registered key holder! The driver is obliging, friendly and sensitive about why we need help. Baxters phone a week before delivery to check what supplies are needed and so far it has worked like clockwork - with a bit of notice they'll deliver to a different address, hotel, friend's home, etc so we're not restricted by where the dialysis takes place.

An exchange uses one bag, four a day makes a total of 28 a week each weghing 2 litres and so each weekend we use a garden trolley on two journeys to carry seven boxes of fluid into the house where we put them under a table in the conservatory, then D takes a box at a time up to the bedroom where he uses them for his dialysis. We are lucky enough to have en en-suite, ideal for hand-washing, storage of some items and a bin for the empty fluid bags which go into a yellow medical waste bag which gets collected fortnightly by the Council, again works like clockwork so far.

D needs a working surface so uses a blanket box which was already at the end of the bed with a sheet of glass on top so it can be wiped sterile, it could have been a little melamine table or similar. Next to that a chair, radio, clock, phone, book, etc and an empty cat litter tray on the floor - ideal size for the empty bag to drain into and protects the floor in case a bag leaks although none ever have. One full bag did have a very minor leak but that's rare and easy to spot before use, so no mess! The only things D needs to do are to make sure the canulla exit wound stays clean and dry, make sure everything is sterile (quickly became an automatic process), check the drained fluid is clean and record fluid and body weights for his medical records.

The community nurse trained us both in the exchange procedure at the hospital dialysis unit but after a week felt D could began doing the exchanges on his own at home, initially very daunting. The first few exchanges went fine, then D began having what looked like a prolonged fit or stroke at the end of each exchange. They were horrendous for me to see as I thought he was dying, necessitated an ambulance to A & E and that was the rest of the day gone, even the nurse was concerned when she was present at one of the 'turns'. But we were later reassured that they were vaso-vascular 'faints' and once D learned to control the end of each draining of fluid there were no further problems!

Keeping the exit wound clean and dry is crucial and was a problem for D initially as he has very bad psoraisis with thin and cracked skin which was being lifted by the plasters used to fix dressings over the wound. However I discovered online a Clicka belt, purchased two at small cost (they're unfortunately not available on the NHS but should be!). D finds them marvellous as he can now have a shower easily without the canulla dangling from his stomach and irritating the exit site and he no longer needs to wear a dressing over the canulla. If you have a canulla do try the Clicka belt if you can afford one - around £20 but only order one as the pack contains two, one for wearing and the other to wash by hand, they're quick drying.

So CAPD has not ruined our lives, we're both able to cope and so long as one or other of us is able to manage the procedure life goes on. Once we are both incapable we'll have to think again, but for now it all works relatively easily and we are glad we made the choice we did.

3 Replies

  • We tried this but due to constipation it did not work. (2 catheters fitted)

  • Hi, constipation can be dealt with fairly well by diet - including oats, apples, roughage generally - and drinking more water - my husband ignores the fluid intake suggestions and manages to keep all his levels even despite drinking alcohol and eating tomatoes and some of the other things not recommended, so we would suggest a normal diet but making sure you have enough of the things to keep your stools regular and soft.

  • Hi, I was sorry to see you struggled with CAPD - yes keeping the fluid levels adjusted correctly and also taking the right amounts of senna in order to avoid constipation is a problem for a lot of people I know. I do hope you've managed to find another method that works for you.