I joined the site when my husband first went onto dialysis but haven't written for a long time. Now I thought I would offer hope to people who are newly adjusting to being on ambulatory peritoneal dialysis.
My husband is 70 and has end stage 5 renal failure. He has been on dialysis four times a day for the last two years. When we were told he would have to go onto dialysis we were concerned whether he would still be able to continue working (he's a professional in the education field) but he is able to work his exchanges around being able to work six hours a day four days a week, which isn't bad given his age!
We were also worried about how we both would cope with the disruption to our home and the way his being on dialysis would interfere with our lives. Two years on and we are pleasantly surprised. Yes, it is frustrating and boring for him each time he has to do yet another exchange, but he has learned to view the time as uninterrupted opportunity to do the crossword or listen to a particular radio programme.
Initially it was difficult to accommodate all the equipment, but we are lucky enough to have a large house and found places to put boxes and equipment so our home still looks like a normal home with only the en-suite and garage greatly affected. My husband is organised and methodical by nature which helps him to stick to the precise routine and as a result he has not had any infection despite also having skin lesions around the exit site due to psoriasis. He now has the routine down to a fine art and can chatter whilst emptying and filling: however he learned from experience that he needs to concentrate for a moment when the drain is about to finish. We learned the hard way that if he lets the drain continue for even a few seconds after the bubble at the end of the drain then the canulla dislodges internally and touches against the vaso vagal nerve - on several occasions I had the distress of seeing him suddenly become unconscious due to stimulation of the nerve and finding he was rushed into A & E in an ambulance. Ensuring the drain is clamped immediately the bubble usually ensures that doesn't happen.
Learning to handle that has been the only really difficult thing for him. After an initial period his weight, bloods and fluids stay even despite eating the same diet as before dialysis, drinking beer and wine regularly and not avoiding or reducing his intake of any foodstuffs. Life can go on we are finding. My husband looks and feels as well as he would expect for a man of his age, when he's tired he sleeps for a couple of hours, but apart from that he lives a reasonably normal life and works dialysis around our going out to concerts, theatre, etc
I hope our experiences offer hope and that those of you who are new to dialysis take heart and feel more positively.
Transplant planned... how does it goes in reality? any advise?
my partner has just been told he has 18% kidnly function left
Saying hello to you all. I'm a nutritionist and yoga teacher specialising in kidneys based in London
My Dad has CKD
