Di Piechowicz, carer of husband and home haemodialysis patient, Andy
Di Piechowocz talks to 'Kidney Life' (the NKF magazine) about her life as wife and carer to husband, Andy, who is a home dialysis patient. Andy is a patient at The Royal Cornwall Hospital in Treliske.
How did you find out that Andy had renal problems?
Andy is 55 now but, when he was in his late 20s, he went for a routine health check-up and protein was found in his urine and then after more tests, degenerative kidney disease was diagnosed. This was monitored for several years and then finally in 1998 his blood tests revealed that he needed dialysis. He went onto CAPD to start with which he did at home.
We moved to Cornwall in late 1999 but, unfortunately, Andy was then diagnosed with bowel cancer. He had an operation to remove the tumour but the scaring from this operation damaged the outer peritoneal membrane so CAPD wasn’t viable anymore. At first we were both really reluctant for Andy to go onto haemodialysis because we’d enjoyed so much flexibility with CAPD and the thought of having to start all the travelling to and from the Unit was a worry. But he had never felt well on CAPD and once he started haemo we both noticed a real improvement in his health.
How did the option of home haemodialysis arise?
It was just mentioned as a possibility one day at the Unit and Andy came home and we talked about it. The travelling to and from the Unit and then time waiting around for transport had become a real pain. And he was just so tired when he got home. Even though everyone was very good at the Unit it did become very stressful. Home haemo’ seemed like the solution.
How did you feel about that, knowing it would mean some of the responsibility falling on your shoulders?
I was all for it because I knew how stressed he got travelling. I just wanted to make it easier for him.
Weren’t you worried about becoming more hands on with Andy’s treatment?
I am a mother of two boys so that gives you a good basic training – you soon learn it’s no good being squeamish with young children around! I am pretty much up for anything and I knew it would improve not only Andy’s quality of life but my own too. When Andy went to the Unit I could either go with him and sit there for hours twiddling my thumbs, or sit at home twiddling my thumbs waiting for him to come home ... I suppose sometimes it was good that he went away for a few hours because if we’d had words it gave us space, and by the time he got home we’d both cooled down (laughing).
What ‘home dialysis’ training did you receive?
I got really, really good training from the home haemo’ nurse Anne Terry; she gave me a lot of help and confidence in my own ability – and still does when I need her. We came into the hospital every other day for a few weeks and I learned how to prepare the machine. I didn’t get squeamish because I don’t consider I have the right to be – its Andy with the real problems and so it was always just a case of getting on with it and doing whatever I can to help him.
After the initial training Anne visited us at home every time Andy had to dialyse and together we wrote a manual that I could understand. Each time Andy dialysed I would write a few notes until everything that could possibly happen leading up to, during and after a dialysis session was written in the manual in language that I could understand. A dedicated telephone is part of the home haemodialysis service and this sits right besides Andy’s machine and I know that whenever we have any problems at all I can just use that phone and someone will answer immediately and help out. That is a very valuable safety net for me. Also when Andy was recovering from his (tumour) operation I dialysed Andy on the ward and got to know the nurses on a personal level, so now I can put a face to a name and that helps.
At first it was very daunting; the sight of my husband’s blood coming out of him and into the machine but it was made easier, a lot easier, by the people who helped us.
Does Andy ever have a ‘bad’ dialysis day – what does that mean for you?
He doesn’t exactly like dialysing but now he is dialysing in his home for two hours, six days a week – rather than for four hours three times a week at the Unit – his dialysis is more even and there are not the peeks and troughs which long dialysis sessions gave him. Also two hours really isn’t that long; he gets settled and watches a bit of TV for an hour or so and I take him up a cup of tea and a biscuit, then its nearly time to come off. Also we make his dialysis fit in with our life style. If we want to go away for a night he will dialyse in the morning of one day and then when we get back the next day he will do his dialysis that evening and because there is less fluid to be removed he doesn’t feel as unwell as he did dialysing just three times a week.
What happens if you don’t feel well?
I am very lucky really, I don’t seem to feel ill and even if I did I doubt it would compare to Andy’s problems! Andy needles himself and so my responsibility is not ‘hands on’ unless he has a problem, and then I would do it for him. In addition to the direct line I also have the renal nurse’s mobile number so I am well supported.
Where does Andy dialysis?
We have a loft conversion which is our bedroom and there is an alcove which is completely out of sight of the main part of the bedroom, where Andy’s chair, machine, TV and phone sit.
What about collection of waste and delivery of supplies?
The council come along and collect the waste bags. Supplies however...well they could be better...I frequently have to get things from the Unit because supplies haven’t arrived on time or at the last minute they’ll say they haven’t got something or they send the wrong stuff altogether. If that bit could be put right then I’d be a lot happier. But the Unit is really fantastic about that and so far we’ve got everything we need one way or another.
The hospital were responsible for installing the dialysis machine and even made sure we has sufficient shelving and that I could reach everything easily. They installed the cables and plumbing needed and also put in the direct line telephone for us. They were very very good and I didn’t have to worry about anything.
What about holidays?
It is easier to go abroad actually than to try to organize holiday dialysis in the UK. We have been abroad and apart from the fact that Andy has to go back to three times a week for dialysis, the Units and service have been faultless and we’ve had great times away in between dialysis. You are restricted in that you can only holiday where a reciprocal arrangement in made with the UK and that excludes some of the places we’d like to visit. We’ve had the best holidays in Tenerife. We booked through Freedom Travel, and then at the Unit Andy was visited every day by a doctor who made sure he was comfortable and being looked after properly. We were so impressed.
How has you being carer to Andy affected your relationship?
I suppose it does put the relationship on a slightly different level because suddenly he has gone from being my lover and my husband to a position were we have become carer and patient and I have to look after him in a similar way that I would look after a child. Also I have become much more aware of his medical condition so it’s no longer left at the hospital. I think patients like to choose what to tell their family and when to tell it but now I have to know everything, and I suppose Andy is no longer in control of that and I suppose this can sometimes affect a relationship. But I think the most important thing for us is that we are a team; we’ve had a very happy marriage for 35 years and the bond that pulls us together is stronger now than ever. I know we are lucky in that respect. I know he would do all this, and more, for me.
Is there anything in your treatment path that, with the benefit of hindsight, you wish could have been handled differently?
I think things have improved greatly since we were first told of Andy’s condition, but I know how frightened I was reading such negative stories about people with similar problems to Andy, in magazines and in newspapers. We have found that although dialysis is not exactly a pleasure, it is possible to live a reasonably normal life around it. I am also surprised at the amount of people who don’t know they can go away on holiday and dialyse (Click here for information about going on holidays with dialysis). It really is very easy and it’s been a tremendous boost to us both, so perhaps this could be said at an early stage. Also we’ve never been quite sure how long we can continue to dialyse like this. I know Andy has to be clear of all cancer for a period of 5 years before he can go on the transplant waiting list. This is a worry for us.
Andy interjects: Also I have a slight hearing problem but I do find that when some people speak to me about my various treatments you’d think I’d suddenly become an idiot. I might have a few medical problems but I didn’t become stupid at the same time!
What problems have you encountered since Andy started 6/daily dialysis?
We had a problem with his fistula once and that started to bleed but we got him into casualty and since then we have managed very well really. Anne comes over to collect his blood samples and sends them off for testing and we keep an eye on his weight so we would know if anything was wrong quite quickly. Andy is not fanatical about his renal diet but he is careful.
And finally — What about the future?
We are happy to talk to anyone who is thinking about opting for home haemodialysis. They come over to our place and see the set up and just sit with us and talk through how we have managed.
Then maybe a transplant... I’d really like to give Andy one of my kidneys.......
Page created: 28 November 2006
Last updated: 18 April 2007
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