I have a lot in common with my dad. We both loved cycling. We both loved the outdoors. Both bespectacled geeks who somehow married women way out of our league. And both, annoyingly, with Polycystic Kidney Disease. I’m doing a cycle ride to raise money towards the Leicester Kidney Care Appeal which is administered by the Leicester Hospitals Charity.
What is Polycystic Kidney Disease?
It’s not the worst disease in the world – most of the time, it lets you have your youth. All the while, though, little cysts are developing in the kidneys which grow and gradually disrupt the function and almost inevitably lead to them failing. Which is when the fun begins.
What are your options?
When your kidneys fail there are three real options:
1) Dialysis: This keeps you alive, but takes up about four hours three times a week. You either have to travel to a hospital to have it done in a dialysis centre, or increasingly nowadays you can do it at home with a portable machine.
It’s decidedly no fun at all. It puts a strain on your heart, increasing the risk of heart attacks, and leaves you feeling tired and strange. Average life expectancy on dialysis is 5-10 years. It sucks.
2) Transplant: This is the gold standard. If you get a good transplant, you can be pretty much as normal (albeit with a reduced immune system) for a decade or more. Things can and do go wrong, but it’s a complete no brainer – if you can get a good transplant, that’s what you want.
3) Death: No thanks. Not yet. I’ve got stuff to do.
Your dad had two transplants…
Dad had two transplants, and many years of dialysis, which he found incredibly difficult. Dialysis is bad enough as it is, but he also had a deep dread of needles, which are central to the experience. Mum had to learn how to operate the machine (housed in a portakabin in our back garden), and for many years acted as his nurse as well as his wife. He would stare at a photograph of Watendlath, an idyllic tarn dear to us all, and imagine himself there while she slid the needles home. Dialysis keeps people alive, but to quote Tolkien (who we both loved – geeks, I did warn you), leaves you feeling “thin… stretched… like butter scraped over too much bread”.
Various complications with the second transplant led to an early death at the age of 59. His was an unpleasant death but he died with incredible grace and fortitude. In his last days we spoke about how unfortunate it was that I had it, but that I shouldn’t fear too much that I would end up like him because he had been rather unlucky in the later course of his illness.
You’ve got a very special mum, haven’t you?
Since I was diagnosed at the age of 21, my kidney function has coasted gently downwards – I have just entered the last phase of the illness, and my mum is going to continue with her long habit of helping out the really compromised men in her life, this time by giving me a kidney. We are both fortunate that she is in excellent health, and has passed all the tests with flying colours. Sometime this summer, I’ll be ill enough to need it, and the operation will go ahead. I’m going to have to make next year’s Christmas present a belter to balance the books.
What’s it liking living with this condition?
I’m very lucky. I’m ill but a treatment is available, and I have someone willing to give me a gift that could extend my healthy life by a decade or more. Many people at this stage experience great pain, but I have very little, and my symptoms are mostly just a drowsiness and general lack of pep. I find it hurts to stand upright for more than a few minutes, but fortunately walking and cycling are largely free from pain, if a little slower than normal. So, I’m a little more doddery than you might expect an average 41-year-old to be, but I basically function.
Tell us about the bike ride …
When was young, my dad told me about a long bike ride he’d been on with his friend Frank, where they tried to get all the way round the coast of England. I don’t know quite how far they got as he’s not around to ask any more, but they got a fair old way over the course of a week or two.
I’ve always wanted to go on such an extended trip, but never thought I would have the time (firstly work, then latterly family). When I recently learned that my transplant was so close, I decided that I should grasp the opportunity while I still had it, and use it to try and do some good.
My friend Andy and I undertook a test ride in October to see how we would fare. We slung our bikes in the back of my car and drove up to Leeds, cycling back over the course of two days – about 45 miles each day on a mixture of trails and roads. It was tough going – at the end of the first day my legs felt as if the bones had been replaced with red hot elastic. While I lay on a hotel bed lamenting my wheelchair bound future, Andy had a bath and reported that it caused some rudimentary function to reappear in his legs. This gave me some hope, so once I had stopped weeping I tried the same and found that after only twenty minutes of alternating between hysterical laughter and foul mouthed complaining I was able to walk. The end of the next day was accompanied by similar, but fortunately diminished sensations, and we decided against all reason that we’d probably be able to survive a longer trip.
After briefly pondering John o’Groats to Land’s End, we’ve settled on riding from my house (near Loughborough) to Paris via the Avenue Verte, which goes from central London all the way to Paris via Newhaven and Dieppe. 388 miles, door to door. At around 45 miles a day, with a rest day in Dieppe (we’re on the Ferry for 4 hours anyway), it should take 10 days.