Brogan_Admin and LisaAR
This is my story to date. I hope it puts a smile on your face.
Berni
MY JOURNEY TO AUTOMATED PERITONEAL DIALYSIS
By Bernard Scala
When I was first told that my kidneys were failing and that dialysis was becoming inevitable, my reaction was probably much the same as everyone else’s in my position.
“Surely there must be another way.”
Having lived with Type 2 diabetes since 2005, I knew kidney problems were a possibility, but somehow, I always hoped they wouldn’t happen to me. Unfortunately, my kidneys had other ideas.
To make matters more interesting, in 2019 I was diagnosed with low-grade non-Hodgkin lymphoma and underwent six sessions of chemotherapy. Thankfully, the treatment was successful, and I have remained in remission ever since (long may it continue!).
I live alone in a small flat in Southeast London and am determined to remain as independent as possible. After discussing the options with my renal team, I chose Automated Peritoneal Dialysis (APD), which would allow me to carry out dialysis overnight in my own home and leave my days free to live a normal life. The thought of attending hospital three times a week for haemodialysis did not appeal.
Looking back, I can honestly say that most of the things I worried about never happened.
My first concern was the operation to insert the dialysis catheter into my abdomen under local anaesthetic. My imagination went into overdrive. I pictured pain, discomfort, complications and every worst-case scenario I could think of.
The reality?
Apart from a bit of pushing and pulling, it was completely painless.
All that worrying for nothing.
One of the lessons I have learned during this journey is that fear of something is often far worse than the thing itself.
I cannot speak highly enough of my renal team. They have been professional, supportive, patient and endlessly reassuring. Every question I asked was answered and, believe me, I asked plenty.
If there were awards for putting nervous patients at ease, they would win them all.
Another concern was something called “drain pain”.
The first time I was connected to the dialysis machine at the clinic, I experienced a sharp pain in my tummy. The nurse calmly explained that this was known as drain pain and that some patients experience it during treatment.
Now, I should explain that I have a very strong aversion to pain. If there were an Olympic event for avoiding pain, I would be representing Great Britain.
So naturally I began wondering whether I could really cope with Automated Peritoneal Dialysis if this happened every night. There were alternatives. I could try manual PD or opt for haemodialysis instead.
Fortunately, I decided to persevere and give it time.
To my great relief, things improved considerably, and what initially seemed like a major obstacle became little more than a minor inconvenience.
I am very glad I didn’t let that first experience make the decision for me.
I must tell you, the first night on dialysis at home was approached with more than a little fear and trepidation. There I was, on my own, facing a machine with tubes coming out left, right and centre, accompanied by the quiet but unmistakable whirring sound of machinery in the background.
My greatest concern was that I would somehow cock things up and end up making an unscheduled visit to A&E!
I can laugh about it now, but I certainly wasn’t laughing at the time.
As I lay there listening to the machine doing its work, I found myself checking every beep, every click and every gurgle, convinced that any unusual noise was a sign of impending disaster.
By morning, however, I had survived my first night on APD, and the machine had proved far more reliable than the nervous old chap connected to it.
But no pain!
Yippee!
Before starting APD, I imagined there would be a machine beside my bed and that would be that.
How wrong I was.
The dialysis machine itself is only the beginning. In my case, I use ten litres of dialysis solution every treatment session. Over a two-week delivery cycle, that adds up to around one hundred and forty litres of fluid, plus boxes of tubing, cassettes, dressings and assorted medical supplies.
The deliveries arrive with such regularity that I began to suspect I was single-handedly keeping a cardboard box manufacturer in business.
My little flat simply wasn’t large enough to accommodate everything.
The solution was to buy a garden shed.
Yes, a shed.
Sometimes joke that I didn’t realise starting dialysis would involve becoming a warehouse manager.
The shed now houses a substantial quantity of dialysis supplies. Visitors who don’t know what it contains probably assume I am storing gardening equipment. Little do they realise that it is actually the operational headquarters of my home dialysis programme.
I should add that the APD team takes care of everything. They deliver the supplies, stack the boxes exactly where I want them and remove any packaging. I don’t have to lift a finger.
Maintaining my independence has always been important to me, and one thing that has helped enormously is my mobility scooter, affectionately known as “Moggie”.
Thanks in part to a generous grant from Kidney Care UK, I was able to purchase a Model T Elite mobility scooter that enables me to remain active and independent.
The grant made a tremendous difference to my quality of life. Without it, purchasing a suitable scooter would have been much more difficult.
Having the freedom to get out, visit friends, attend appointments and simply enjoy the fresh air has become even more valuable since starting dialysis.
Kidney disease can take away many things, but independence doesn’t have to be one of them.
Of course, no one makes this journey alone.
My daughters, family, friends, renal team and organisations such as Kidney Care UK have all played a part in helping me adapt to life with dialysis.
Their support has reminded me that accepting help is not a weakness. In fact, it is often what allows us to continue living life on our own terms.
Today, my life includes a dialysis machine, a catheter, a shed full of supplies and a mobility scooter called Moggie.
None of these were part of my retirement plan.
Yet here I am.
