My name is Miranda Dodwell and I am delighted to be asked by Donal to be his first guest blogger. I was diagnosed with polycystic kidney disease nearly 25 years ago and had a live donor transplant about 18 months ago which has been very successful.
I’m quite new to being a renal patient representative, but have been a ‘service user representative’ in maternity services for some years. Interestingly maternity services don’t have ‘patients’ and I have found it quite difficult to become one myself!
The year before my transplant felt very difficult. Taking a lot of medication; coming to terms with being seriously ill; adjusting my lifestyle to cope; and looking after my children and all their fears for me were just some of the issues. But it was probably no harder for me than for anyone else in the same situation.
And so many questions! What would life be like after a transplant? Was I doing the right thing? What if my donor fell through? Would I need dialysis? How would that be? Again, I’m sure I wasn’t the only one in that situation - but it felt like that. I was wonderfully supported by friends and family and my lovely consultant (who put up with quite a lot from me) but no-one could really understand what it was like.
At the time I was working as a childbirth educator, teaching antenatal classes for the National Childbirth Trust (NCT). These classes were groups of pregnant women meeting up each week to learn about pregnancy, childbirth and living with a new baby, and to understand decisions they might have to make. I offered them different learning activities; games, work in small groups, discussions, practical skills and brainstorming sessions. The classes drew on the participants’ own knowledge, experiences and feelings, and I was there to facilitate that learning process and share what I knew when appropriate. Over the sessions, the groups would bond and become an important support network for each other. Some of the discussions were difficult, like talking about losing a baby, but it was a safe environment for people to talk about their worst fears and also their greatest hopes. The women came out of the classes confident and empowered.
I couldn’t help but draw parallels with my own needs as a ‘kidney patient’. I wanted a place like that, where I could go and have my questions answered by someone who could listen and understand. I wanted to meet other people in the same position as me and find out what they knew and how they coped. I wanted to know what all my options were, and how they related to me personally, not just watch some DVD at home by myself.
This idea of having ‘renal replacement therapy preparation classes’ has been in the back of my mind ever since. As luck would have it, I met Donal recently. We fell into discussing the education of pre-dialysis patients and I was able to suggest this to him. I’m now looking at implementing this at my local hospital. If it works out, maybe Donal will let me borrow his blog again, and I can let you know!