Many patients with kidney failure spend years on dialysis waiting for a transplant. Judith Cole talks to two men who found the experience debilitating and hears how they are now engaged in pioneering research by Queen’s University into the psychological benefits the arts can bring.
William Johnston (52) lives with his wife Carla in Bangor. He says:
I was born with a kidney defect and had a successful operation when I was three. I did a degree and went to London to work - I was very active and loved playing rugby. It wasn't until I went to give a pint of blood that I discovered something was wrong - I was very anaemic and it turned out that my kidneys had been failing for years.
At the age of 28, in 1995, I was diagnosed with end stage renal failure. I came back to Northern Ireland because I didn't want to be on dialysis in London by myself.
I had continuous ambulatory peritoneal dialysis (CAPD) and a transplant came in very quickly for me, within six months. Unfortunately, it rejected two years later and it was discovered that it had riddled my body with antibodies which made it difficult for me to be matched with another potential transplant.
When I came back home I met a young lady called Carla who would later become my wife. So you could say that if my kidneys hadn't failed I wouldn't have come back and I wouldn't have met Carla. There's a plus side to everything.
With CAPD, the dialysis machine is connected to a tube in your abdomen and you can operate it at home. I continued with this, during every night, for two years. But your abdomen can only take so much dialysis and in 1999, I had to change to hospital haemodialysis which involved attending the unit three times a week for over four hours each time. Instead of a tube connecting the machine to your abdomen, it is connected to one of the large veins in the neck or in the groin.
Between 2001 and 2005 my family and friends were all tested to be a live kidney donor. Both my mother and my twin brother were incompatible.
After all these disappointments, I thought 'I can't go on with this regime at the dialysis unit, I'll try and take control of the haemodialysis myself'. So I was trained to do haemodialysis myself at home.
It was another eight years before another call for a transplant came in for me. Seventeen years on dialysis drove me mad - the time went so slowly. I was desperate for some way to voice my emotions. I'd never written poetry in my life but I thought I would give it a go. I could let the world know what I was feeling.
I wrote a poem called The False Dawn about being called for a transplant four times. You go there with such high expectations, you think you're going to have freedom, and it turns out not to be your kidney.
Over the years I wrote poems about every experience that I remembered from dialysis. I put them in a catalogue called The Loss of Hope Can Drive a Man Insane, which was taken from a line in one of my favourite films, The Shawshank Redemption. Dialysis was a bit like being in prison, like the characters in the film. You can't escape from it and you're restricted in what you can eat and drink.
When I started home haemodialysis I could decide what time I did it. From 2009-2010, while connected to the machine, I started to write a play called Gift of Donation - or the GOD play. It was based on organ donation but I discovered that when I'd connect myself up on dialysis I'd lose myself for the next four hours in the play. I had dialysis every other day, so the day between sessions I'd walk the dog and think about how I could take that scene forward, and I found myself actually looking forward to getting back on dialysis again to write some more.
The play took me about nine months to do. It was great because it wasn't wasted time and I got something tangible out of it.
That's why I think the arts has so much potential in this situation - patients can rediscover creative skills and get something productive out of sitting for all those hours on dialysis machines.
It gives you back some self-esteem. Through those many years of dialysis I was crying out for some counselling, some kind of psychological resource.
In 2014, I received my second gift of life and the transplant has been successful. A transplant is not a cure - it's a wonderful thing, but you have a chronic disease and there is a chance you might need another transplant in the future. I think that you probably need as much support when you're post-transplant as when you are on dialysis and again, this is where the arts come in - they help people to rekindle what they enjoyed doing in the past.
I became involved with the NI Kidney Patient Association (NIKPA), basically because I wanted to do something when I was on dialysis. Dr Helen Noble, from Queen's University, was part of NIKPA as well and one day I told her about my poetry - she said it could be used to develop something. This was how the Renal Arts Group (RAG) was started, in 2016.
My GOD play was performed at the Brian Friel Theatre at Queen's in 2017 and last year three of my poems were read at an Arts in Health symposium at QUB.
Two years ago, I was appointed to a part-time advocacy position with Kidney Care UK in NI - and now, through RAG, Kidney Care UK has provided an arts administrator. It is exciting to see the arts really developing now and I'd love to see it recognised throughout the renal community."
Christopher Johnston (56) lives in Moira. He says:
My experience of kidney disease, dialysis and waiting for a transplant was tortuous. It really affected me psychologically and that's why I'm so passionate now about getting help for people who are on the same journey.
I was very fit and healthy until my mid-30s. I didn't even own a car until I was 32 as I walked and cycled everywhere. I did a lot of outdoor pursuits - canoeing, kayaking and swimming.
I first noticed symptoms during a tour of the west coast of the States. I didn't feel well but I thought it was just jetlag. I was in Disneyland and was on all the rides but I felt very dizzy and was sweating and my skin was yellow.
One night I went to a restaurant which had one of those all you can eat menus. There was free Coca-Cola and, although I would never have chosen Coca-Cola, I drank a litre of it and asked for more. I was thirsty all the time and on the way home on the plane my nose was bleeding and I just knew that something was wrong.
As soon as I got home, my GP sent me straight to A&E and after some tests they told me that my kidneys weren't working and that I had to start haemodialysis right away.
A line was inserted into my neck to enable me to be connected to the dialysis machine. That was the beginning of my dialysis journey - and it was traumatic. I had to attend the unit three times a week, for four hours each time - you could go either in the mornings, afternoons or evenings and I was given the evening slot, from 8pm to midnight, because of my young age. I saw other patients get up after their dialysis session and walk out, but I felt like I'd been hit by a bus every time.
I had been working in training development but after a while I was made redundant because I just wasn't able to do a full day's work. I was exhausted. I wasn't sleeping, I had crazy dreams.
After about nine months of haemodialysis, a nurse told me that there was another type of dialysis called continuous ambulatory peritoneal dialysis (CAPD), which could be done at home.
I jumped at the chance. It involved another operation, to take out the tube in my neck and insert one into my stomach. With CAPD you are attached to the machine for 10 hours every day. I used it overnight - it started at about 9pm and would be finished at 7am or 8am.
The advantage was I could travel - I took the machine, which was 25kg and like a heavy suitcase, to New York and to Spain.
I was on CAPD for five years, all the while waiting for a transplant - which was very difficult. I had three potential organs which turned out not to be matches.
Then in 2005, we found out that my brother was a match and after the transplant operation I bought one of those round-the-world tickets and went to see friends in Australia and New Zealand.
During the whole process - and after my transplant - I found myself longing to speak to someone. It really affected me. One minute you're fit and active, you have a job and a life, and the next it's all gone. The clinical care is excellent but I found the psychological care non-existent.
That's why I got involved in the Renal Arts Group and raising awareness to get more psychological help for kidney patients. I heard that William Johnston and Helen Noble had started the group and I thought it was a brilliant idea. It's exactly what a dialysis unit needs - people engaged in painting, drawing and writing poetry. These are great ways to take away that drudgery, to help you cope.
Now I'm working with the group as an 'expert by experience' - I talk to people about my experience of dialysis and tell them what I think would help. My hope is that this is rolled out to all the units as it would be an excellent resource."
Dr Helen Noble, senior lecturer, Queen’s University Belfast, writes:
A diagnosis of end stage kidney disease (ESRD) is devastating and life-changing . When kidney function is lost, many patients require dialysis, a difficult and demanding treatment which impacts profoundly on quality of life and requires regular visits to the hospital, surgical procedures and strict dietary and fluid regimes. Depression and anxiety can lead to additional symptoms and subsequent worsening of quality of life.
Academics at Queen’s University Belfast have been working closely with people with renal disease and renal clinicians to develop a programme of research with the ultimate aim of improving the physical and psychological quality of life of those with renal disease. A more recent collaboration has been between academics, patients and carers, clinicians and artists in the form of a Renal Arts Group (RAG), initially funded by Kidney Care UK. Co-chaired by Dr Helen Noble and William Johnston — who has had a kidney transplant — the group is novel and heralds an innovative approach.
Many members have artistic interests including music, poetry, photography and dance. Arts and health has the potential to benefit service users with ESKD and the forming of the Renal Arts Group has provided the opportunity for development of multi-disciplinary education and research.
The collaboration was established after William contributed poetry he had written about his life with kidney disease. The poetry was subsequently integrated into a film to be used as an educational tool for renal staff.
The film was presented at the Northern Ireland Festival of Social Science after the group was awarded ESRC Northern Ireland Festival of Social Science funding for a public event titled ‘Waiting for a transplant on dialysis: living while dying with kidney disease’ at the Black Box, Belfast. The group also took part in the Creathon event at the Ulster Museum where more than 3,000 members of the public partook in a variety of creative activities, facilitated by RAG to raise public knowledge of kidney disease and the impact it has on patients and families.
The event was supported by members of the Northern Ireland Kidney Patient Association and the public were encouraged to create a butterfly, the emblem of this association, co-ordinated by an artist who is a member of RAG and an Arts Care Artist-in-Residence.
In addition, RAG hosted a two-day event with staff and students from the Center for Arts in Medicine, University of Florida, and members contributed personal stories, music, poetry and photography.
The influence of RAG led to funding for Claire Carswell to undertake a PhD exploring the use of arts-based interventions in a kidney unit. The study is now completed and she is analysing the results. Artwork from this study will be displayed at events to be held across Northern Ireland over the coming months.
Find out more about NIKPA at www.nikpa.org
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