Peter’s story – 14 Years as a Kidney Patient – a Snapshot of My Memories
We thought I had ‘flu. I was sick, shaking, couldn’t stop hiccupping. After seeing three GPs I was eventually sent to hospital. Then the ambulance to the specialist unit, a dialysis machine in the middle of the night, in the middle of winter. My wife asked if I was going to die. They wouldn’t answer. In the event it seems I was quite close.
My memories of that time in hospital are strangely disassociated. Woken up every few hours when the dialysis machine was wheeled in, trees silhouetted through the window. That horrible gloopy stuff they insisted I had to eat and Sue spooning it into my reluctant mouth. I was let out of hospital for Christmas. Home after six weeks. Gradually back to work, but without the energy to do the job.
Some context. My wife Sue and I had been together for 7 years and were about to adopt, after a year’s preparation, two much battered children. I had never had a stay in hospital before this episode of acute kidney injury. I was a high achiever, working in the social care sector looking forward, at 56, to one more big job, one more project where I could make a difference. AKI and the fatigue put an end to all that.
We moved home to Derby. At first I seemed to be in and out of hospital like a yo-yo. A lot of pain at times. Snapshots again. A flock of junior doctors, huddling uncertain in the corridor. Good advice from nurses – never let a doctor take blood. Staff becoming friends. Feeling safe.
Over the months increasing tiredness then CAPD. Those were the desert years. Bone weary fatigue. A daily routine, hoover, walk the dogs, collapse into a chair. The down side – frustration, anger, feeling suicidal, to the GP – God bless Prozac. Coming to terms with it all. The up side, making best use what energy I had, reading, getting into philosophy again, caravan holidays (dialysis fluid taking up half the awning) walking the dogs on the beach, discovering local folk concerts, local theatres. Hilarious family meals.
But years pass, you get slower, hopes of a transplant fade.
Winter again. A phone call; “are you up for a transplant?” Three hours later – on the table. Afterwards they said I looked different, smelt different. I certainly felt different. Ready for home. Looking forward to a normal life. That was it, assumed it was now happy ever after!
Winter again, four years later. Christmas Day, rushed into hospital. Violently sick, shaking, and this time hallucinating (don’t ask me what murky corner of the mind conjured up an orangutan polishing a sideboard!) They told me I was seriously ill, 50% kidney function gone – although that came back. The disassociated state, an observer as much as a patient. Forced fluid intake, felt I was peeing for England. Back home, I took two months to get fit again. Bit more wary now of planned trips outside Europe. Still, plenty to do; we’re planning a month’s slow drive round Scotland in September. Must remember the tablets.