The phone rings. It’s a withheld number. My heart skips a beat. This is it. I can feel it.
“Can I speak to Mr. Brown Please?”
“It’s about your car insurance.”
Now I feel depressed.
How do you live your life when you never know when the call that will change your life forever will come?
According to the UK Organ donation list more than 10,000 people are waiting on a transplant and every single one of them is waiting on that phone call that will change everything. I am one of those people.
Nearly 1,000 people die each year waiting on a transplant; that’s three people a day. Granted most of them are not kidney patients but are people just wanting a second chance at life and need a helping hand to get it.
In the last year 951 people have been kind enough to donate their organs when they die. With these gifts of life 2,622 people are now living a normal life as you are doing so now.
Seven and a half years have passed since I was told my life would consist of dialysis sessions three times a week to keep me alive. The hours on dialysis over that period amounts to 208 consecutive days. Wow, that’s scary.
Life on dialysis and with kidney failure is structured beyond belief. I have never had a Tuesday, Thursday or Sunday evening free to do what I like for a long time, as these are the days I have to be at the hospital. This is not the only limitation on life as a dialysis patient. Most people don’t know, if your kidneys don’t work you have to curtail your fluid intake. So imagine living on a litre a day fluid restriction – that’s three cans of juice a day all in. So as an experiment count how much fluid you have in a day, from the milk in your cereal to the cups of tea to the yoghurt and fruit you consume. You will soon realise how quickly you pass that one litre mark.
This is probably the hardest part of living with kidney failure. Not being able to drink whatever you like, whenever you like is extremely difficult especially when all your friends are having a big night out or more importantly drinking when you feel thirsty. When you receive a transplant the pendulum swings the other way. The doctors initially after the operation get you to drink huge amounts just to keep the kidney moist. Everyone who needs a transplant always says they will easily cope with the return of the drinking but every one of them has to get help with an IV drip for the first couple of days.
Of course there is also the diet! This part is the most difficult for me. I can handle the not eating high-potassium foods such as bananas and baked potatoes and I have never really taken to drinking coffee but my love of a good piece of cheese is a real downfall in the dialysis diet. I know the side effects of having high phosphate but I just seem to struggle not to eat a slice of strong cheddar or a lovely piece of smoked Applewood.
I had a friend who received a transplant and the first thing he did was drink an over expensive cup of coffee. That was his vice! Mine is cheese!
Living and waiting on a phone call that inevitably should come at some point as well as living your life on dialysis is a balance that comes with time. You have to, or should I say must, get on with living your life as if this was a by product, an inconvenience if you will. I spent the first couple of years on dialysis not committing myself to anything, scared I would miss the one thing I craved for. I realised that, with a little help from my friends, life can be lived, in a structured way, by doing the things that matter to you.
Words and photography by Edmund Brown