First Patient View - (full conference transcript)
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Gordon Nicholas: I’d like to introduce Polly Moseley. Polly’s kidneys failed in 1993 and she was on CAPD for three years, during which time she lived in France. She then had a transplant, which unfortunately only lasted three months. She went on to hospital haemodialysis for three years and was then on home haemodialysis for three years. She is currently working full time and likes to travel, having dialysed in nine countries. Some of us remember that she won a prize at an earlier conference for an essay she wrote about her life on peritoneal dialysis. Today she will present her views on dialysis.
Polly Moseley: Thank you, Gordon. I’m very pleased to be back. As Gordon says, it's eight years since I attended the conference when I was a student on CAPD. Since then I’ve had a lot of ups and downs, both with my health and in general, but the past couple of years I’ve been pretty strong and fit on haemodialysis.
I’d like to thank the first two speakers for their excellent presentations. It’s very encouraging to hear these developments which will in the future improve the patientsquality of life.
I’m going to give a brief patient’s perspective on daily dialysis. I was very impressed by Professor Terry Feest’s presentation. It certainly made an impressive case for daily dialysis and was very patient-centred, which is refreshing.’He did cover many of the concerns which I think patients would feel initially when having the choice of dialysing every day as opposed to three times a week. I can relate to the anxiety that proposing a shift in type of dialysis presents. When I first changed from CAPD to haemodialysis, I really I thought it was the end of a free student lifestyle I’d led. I thought that the early stage symptoms I felt from haemodialysis in terms of headaches and feeling really light-headed, which were a lot worse when I started than they were in the longer term, would really have a negative impact on my quality of life. I was very anxious about what the future would hold on haemo. However in time I found it was a lot better for working life in that having the day off in between and being able to fit it around the working life make it a lot easier. I did work on a holiday job on CAPD but I had to dialyse at my lunch hour in the boardroom upstairs and it wasn’t that easy. I think sometimes our preconceptions about what is ahead when we think about changing, either from one type of dialysis to another or having to adapt to dialysis in the first place, either initially or post transplant, our concerns are sometimes a lot more exaggerated than we find as we get used to the treatment. When I first changed from hospital haemo to home haemo, again it was quite a tricky time, and my mum actually dialyses me at home at the moment. I’m very fortunate to have that opportunity. Since I’ve dialysed at home, I have had increased energy levels, reduced my Epo, I’m no longer on blood pressure tablets and I’m able to work full time and sustain a relationship which I didn’t really manage either on hospital haemo or CAPD. These relate to some of the improvements that Professor Feest mentioned about daily dialysis. I actually think one of the key factors here is stress levels and anxiety. I think the whole process of going to the hospital three times a week, crossing that threshold into a kind of culture where you become a dependant and you lose control over your environment and you’re put in quite an alien environment. For all of us who go into a hospital dialysis ward, it’s a big shock to the system. I think the emotional impact of that on our lives is it actually causes a lot more of the symptoms than people are perhaps aware of. It was clear to me after dialysing at home for a while.
I’ve now been on dialysis for nine years. My key objective is to maximise the time in which I’m healthy and independent, therefore minimise my drug intake and minimise the impact of dialysis on my work and social life.
I may have the opportunity to trial daily dialysis at home next year. I’ve been discussing the possibility with my consultant, and I would willingly do this. I’d willingly do this because of the reasons for which Professor Feest so eloquently described. One of the key impacts on my life is not the physical symptoms, but the mood swings I get from being on dialysis three times a week. I feel really groggy before I go on, and as well as feeling weak and tired when I come off I also feel very emotional. The impact on your emotional life is really quite a lot. I think that would have a big impact on my life and my confidence if that was lessened by doing it five times a week. I could not be so tired for work the day after dialysis and basically I think it would make a big difference. Obviously when I went on holiday I would go back to dialysis three times a week, which is what I do on holiday at the moment, but I don’t think that would present a problem.
Home with the kind of machine where you don’t have to change the lines every time, so it doesn’t need so much time setting up and doesn’t need all the plumbing, that would be a good option, better than it is at the moment, because I don’t want my mum to have to do it all through her retirement. I would like to be more independent, but I don’t think home should be put forward as the best option for all patients. In Toronto there’s the Shepherd Centre based in a shopping mall. You can go on exercise bikes before and after dialysis in a gym beside it. What I would ideally like to see in terms of centres is more localised provision, where you could call in after work and do an hour or a couple of hours five or six times a week, but there would be other amenities there which you could use, maybe a gym or some shops, so it wouldn’t need transport to the hospital and you could fit it into your normal life. I think that this kind of dialysis that happens in Canada and Holland and France does mean a shift in culture and the way we think about dialysis. I think the National Service Framework presents an excellent opportunity. I was privileged to be part of the patient consultation for the NSF this year. I would like to see some elements of dialysis for the more stable, longer term patients shifted to primary care function, as is happening for other chronic illnesses, while maintaining the secondary care provision for those who need it. But all of these options that widen patient choice are very much welcome. I hope that brief insight into my perspective on daily dialysis has been interesting.
I’ve actually just written a report as a result of the consultation I’ve done on the NSF which I would be happy to share with people as well. Thanks for inviting me today.
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The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.