Richard Owens, 76, was diagnosed with a rare kidney disease over 27 years ago. During this time Richard has been on different types of dialysis, medication and had a kidney transplant. Eighteen months ago Richard found out that he also had prostate cancer and secondary cancer in his spine. It was then that Richard came into contact with his local charity Hospiscare in Devon. Here he explains how the diseases have impacted his life and how Hospiscare are helping.
Over the 27 years of having kidney disease I have nearly died three or four times. Managing the fluid levels is the challenge. If I drink too much my blood pressure goes up; too little and my fluid levels and blood pressure drop and I collapse. On one occasion I went completely blind for two days. My sight came back, but on a secondary occurrence my left eye gave up completely. My right eye is now going too. Losing my sight is the thing which has generated the most irritation. It was the trigger for me to start writing poetry. I have written 260 poems and the early ones are quite angry.
Earlier in my illness I used CAPD which is a continuous dialysis. You have a bag which you change three times a day. It was quite a self-sufficient treatment so enabled me to carry on working. I was also a keen cyclist and participated in many road, track and time trials events including a 100 mile cycle, a 12 hour event where I covered 240 miles and a 24 hour race where I clocked up 420 miles. I would stick a CAPD bag on the roof of my car and do a change whilst out cycling.
I remember going to a cycling club Christmas dinner dance and having to take three quarters of an hour out of the evening to exchange my dialysis bags. Then I went back and enjoyed the evening. The thing is, the medication does you harm whilst doing you good. My body is breaking down from the disease, the procedures and the medications.
When I was 54 I had a kidney transplant which lasted until I was around 60. Then it failed. That was quite an excruciating time. The medication was very invasive and I went onto haemodialysis, which meant linking up to a dialysis machine three days a week for four hours at a time.
It’s tiring as you get older. Once, moments after dialysis, my heart stopped so I had a pacemaker fitted. I wouldn’t volunteer to have any of these diseases or wish it on anyone else. This is not how I saw my future self. When I was younger I thought I’d be cycling and picking up my pension in my latter years, doing the things that I see my friends doing now. But it wasn’t meant to be.
I kept cycling for as long as possible. As my sight failed and I was less steady on my feet I adapted to cycling a tricycle on the canal path. But even that is tricky now my sight has deteriorated further.
I enjoy my days coming into Hospiscare. It is useful on a number of levels. I find it relaxing and comforting. It gives me a break from dwelling on my thoughts. As my sight has reduced and I have become more dependent on my wife Ann, it enables Ann to have some respite too. I enjoy chatting and sharing experiences with other people at Kings House and if I have any problems I can talk to a nurse. I am also grateful for the option to be cared for at home.
I’ve got a theory that it’s not the cancer that is going to kill me. It will be the kidney disease, it’s tried a few times already. The doctors said the cancer would kill me in five to ten years. I thought that was great because with the kidney disease I am never sure if I will make it to the next dialysis treatment. If I don’t have the dialysis I have a fortnight left to live.
Each dialysis I have I always think this might be my last fortnight alive. I don’t see myself suffering pain. Access to my blood vessels is getting harder. My surgeon has put temporary lines in loads of different places on my body – my throat, shoulder, and the last one was in my spine. It’s a case of how far am I prepared to take this?
I have signed a consent form saying that I don’t want to be resuscitated. I have an unwritten plan for when I am at the point where things can’t be repaired or replaced. At that point I will need all the help I can get to keep the spirits up. So I am really grateful to be in the caring hands of Hospiscare.
For more information visit Hospiscare