The special life of a kidney patient by Paul Chear - Volunteer / ACE Project Peer Educator
Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’. – Mary Anne Radmacher
I should start by saying that the special kidney patient is not me but my Mom and this is how she inspired me to be a volunteer.
So where do I begin, I guess I should start back at the age of around 10 or 11. I’m 41 now so that was some time ago; back then I don’t think I even knew a great deal about kidney disease, but it feels to me like it was the first time I can remember something being different at home. I can recall thinking, ‘Mom’s feeling ill again’. Family members would comment and say, your mom’s not well today and she’s very tired’; yes, I would hear that often. As a kid I guess you just accept that’s the way things are and don’t often question it. To me it was normality. It’s only now looking back that I realize that throughout much of my life she was unwell and affected greatly by this illness. In fact, I don’t recall a time when she was in great health – just sometimes things were bad and other times they were not so bad.
Having said that I never really heard any complaints or not that I recall anyway. Don’t get me wrong there were some pretty bad times that I can remember but for the majority she would handle it with a kind of silent grace and just get on with it. She would deal with most situations like this, with a combination of positivity and a quirky sense of humour. For me, even to this day I find the way she coped with her condition amazing and inspiring.
I don’t know the exact details of Mom’s kidney failure, all I know is that her health started to deteriorate a few years after I was born, which eventually resulted in kidney failure and peritoneal dialysis (PD) treatment.
For those unfamiliar with peritoneal treatment, it is where a soft plastic tube (catheter) is surgically placed in the belly (usually) and a sterile cleansing fluid goes in through the catheter. The filter process takes place inside the body and afterwards the fluid leaves the body through secondary catheter into a plastic bag.
This type of PD involved 3- 4 exchanges a day; bag changes is what we called it. It’s going to sound a bit strange, but I have some very fond memories as a kid of this. I would regularly help her during these exchanges, sometimes by heating the plastic treatment medicine bags before the change or often acting as a makeshift medical stand. I would hold the exchange fluid bag aloft with one hand, so it could drain, and with my other hand be playing my Gameboy!
It was during time like this we would have some of our best conversations and, looking back, it was a great bonding experience and brought us much closer together.
After being on dialysis for many years she was fortunate to receive two transplants later in her life, the second of which was successful for almost 14 years.
I’m not going to sugar coat it and say it’s an easy journey being a dialysis patient because it’s not. It requires a lot of adjustments in your life, as well as a very strong mindset. It can, however, be made much easier with the right kind support around you. I think that is very important. I’ve seen for myself how a good support network can make such a difference. I’ve met so many positive people – from doctors, nurses and volunteers – they can all help patients to live a full and active lifestyle. Many of the people I’ve met, you wouldn’t even know they were kidney patients at all.
On 21 November 2012 my Mom sadly passed away from an unexpected and unrelated illness. At the time I went through all the emotions that you would expect, pain, anger, sorrow, regret. I don’t think you ever get over the loss of someone that means so much to you that you can’t imagine your life without them. The passage of time does, however, give you time to reflect on the person; to remember just how incredible they were.
It was only some years later that I came to understand why Mom would get so much more emotional than normal on things like birthdays or when I got married and when my children were born. It was because she deep down I think she thought she wouldn’t be around to see these moments. She lived her life pretty much day-to-day, because she had to. I feel I would have been doing her a great disservice now if I wallowed in self-pity; it wasn’t her way to deal with things and it shouldn’t be mine. The best way for me to honour her memory is to try and be a positive person and use my experience of dealing with this illness to help others.
I think she would have liked that a lot.
The heartache will always be there for me, but I believe now and, for the rest my life, she will continue to help and guide me in the right way.
I think ultimately that the strange thing about any illness is that it gives people a different outlook on life. In a lot of people, it creates a new positivity and urges people forward: ‘This is not going to be beat me, I’m going to carry on with the rest of my life’.
Paying it forward
‘So, what can I do?’ This is a question I asked myself a lot. I felt I wanted to do something, to give something back. But even though I’ve lived and cared for someone with this illness, what have I got to give?
There’s a poem by John Donne called No Man is an island. Basically, it means that we all kind of rely on one another and need one another to live and to thrive. I think that when someone you love goes through something like a long-term illness, then you kind of experience it yourself. You go through similar emotions.
After Mom passed away, I very was fortunate enough to keep in touch with some of the doctors and nurses over the years, and one such person was Neerja Jain who I knew as a nurse in the renal unit my Mom was treated in. Today, Neerja is a Health Improvement Project Manager for Kidney Research UK and she contacted me about becoming a volunteer. I’m so grateful that she did!
Being ACE!
The ACE Project, which stands for Acceptance, Choice & Empowerment, is a peer educator based-community project that aims to improve choice and quality of life for pre-dialysis patients. The project I became involved with was a 12-month pilot project led by Kidney Research UK and the renal team at The Heart of England Foundation Trust (HEFT), which was also supported by a grant from Baxter Healthcare Ltd.
ACE involves volunteers, people and patients, some with and some without prior experience of kidney disease, and training them to become peer educators enabling them to raise awareness of kidney disease and dialysis options for patients.
ACE focusses on minority ethnic groups, because these communities are at higher risk of developing organ failure. They are also less likely to be an organ donor because of religious beliefs, cultural differences, etc., and therefore wait longer on the organ transplant list.
The induction for the project began in October 2015, with the project starting in early 2016. Having had no experience of volunteering or charity or community working, I was rather apprehensive and a bit sceptical about what was involved and how it would work.
But my initial apprehension and nerves very quickly vanished after meeting the other volunteers. I was amazed at how quickly we all bonded, even though we all came from different backgrounds. We had one definite thing in common and that is, we wanted to give something back. Today, we are all good friends, and even though the project has finished, we’ve remained friends.
Why it works
I think a key element and one of the uniqueness of ACE and the peer educators model is the involvement of volunteers who come from the same or similar communities as the patients they were hoping to help.
The perspective of being part of a minority ethnic group really does open doors. Just speaking to patients in their own language breaks down many barriers. And with some of the volunteers being patients themselves, they could really speak personally to people.
The ACE model has nurses and other healthcare professionals working alongside the peer educators, providing the patients with information about dialysis options and treatments which will help improve their quality of life.
It’s a success!
There have been so many positives from the project including the public patient information days to the creation of Dialysis Decision Aid booklet, developed by Dr Hilary Bekker and the Kidney Research UK team.
Although the ACE project officially ended in September 2016 many of the volunteers have continued to offer support.
Furthermore, the project has been so successful that it has expanded from Birmingham and London and is now operating in Glasgow and Edinburgh.
Ultimately the success of the project for me has been that I have seen the positive impact it can have on patient directly. My motivation was that I wanted to give something back and help where I could. Yet being involved with this has truly enriched my life too – along the way I have met some incredible people and made lifelong friendships.
So, here we are two years on and the project is again being reviewed and evaluated, hopefully to be awarded more funding and development opportunities. And it is healthcare professionals that are driving that; the doctors, nurses, who have seen all the positive results firs thand.
So, if this is something you think you might be interested in, then please contact us.
Why not do something amazing? Believe me it’s one of the most rewarding things you can do!
Find more information about our peer educator work here (link)