Mat Dibb – The road to transplant

Last year we met Mat Dibb, a keen cyclist who suffers from focal segmental glomerulosclerosis — chronic kidney disease. Mat’s kidney function has dropped to less than 25 per cent and it is now expected he will have a transplant sometime this a year. Over the coming months, Cycling Weekly online will be following Mat’s journey up to and beyond surgery.

“As with most cyclists at this time of year, the weather is generally the biggest hindrance for me, but I’m finding my energy and cycling performance levels are particularly reduced in the cold weather,” Mat says.

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“I used my e-bike a lot in November and December to ride to work but less so since Christmas as every day seems to have included torrential rain. As a result, though, I’ve been back on my mountain bike a lot at the weekends. I find that as long as you dress for it correctly, even in horrible, wet, freezing cold weather riding the mountain bike is great. Although cleaning my bike down and re-lubricating everything takes almost as long as the ride itself!

“Having spent the last part of 2013 mainly on the e-bike I was concerned about how I would perform amongst my mates on my mountain bike, but I was pleasantly surprised. In actual fact, despite the e-biking being more subdued, I think it has helped me by training more gently and giving my body chance to keep up. As a result I’ve had some amazing two or three-hour off-road rides and managed to keep up, albeit mid-pack.”

Post-ride slump
“However, after I’ve come home, had a shower, and sat down I am just utterly wiped out for the rest of the day. Right now I’m not getting too many answers as to why that is — possibly because typically people at my stage of kidney disease tend to stop or give up exercise,” Mat says.

“Admittedly I’m probably younger than the average person to be at this stage of kidney failure, but nobody has any advice as to what I should be doing in terms of exercise or how I should be doing it, other than suggestions to back off, listen to my body and be sensible. But that approach isn’t really me — I’d rather find out why it’s happening and see how to work round it.

“I thought it might be to do with blood pressure, which I monitor myself at home regularly. My blood pressure typically runs at 147/80, and I never feel very well if it goes much lower than that. Blood pressure is one of the biggest side effects of kidney disease so I’m on medication to control it. We’re currently controlling it at 147/80, even though it’s probably a bit higher than ideal for somebody with kidney disease. But if I go out and exercise on my bike for two or three hours on a Sunday morning, when I come back and sit down it drops right the way down to 110/60 or lower. We all know exercise lowers your blood pressure, but it’s amazing it does it so drastically.”

Watching the potassium
“I’m also now being put onto a diet to reduce the potassium in my bloodstream. As a result of my kidneys not working properly, the more potassium I have in my system the higher my risk of irregular heartbeat, with a worst case scenario being a heart attack. So I’m having to avoid bananas, which I’ve had to do for a while now, and which is also a bit annoying because they were one of my staple biking foods,” Mat says.

“But now the diet has gone another stage further in that I’m having to boil vegetables and throw the water away. I can’t have steamed or stir-fried vegetables. I can’t have fresh fruit juice. I can’t have more than half a pint of milk a day across my tea, coffee and cereal, which is a bit frustrating because I love milk, too. Chocolate and coffee I have to have in moderation, although I can drink tea. So there are a number of adjustments I’m having to make to get my potassium levels down as a result of my kidneys not doing it for me. It is a difficult balance to still take on board the right foods and carbs for exercise.

“Yesterday I met the transplant co-ordination team at St Helier Hospital. We’re on track for my transplant at St George’s in Tooting this year but all of the follow-up consultations will be at St Helier Hospital. As you can imagine the discussion hit home quite hard and made me realise how tough it’s going to be generally over the coming months, but also reinforced in my own mind how much exercise will remain a key part of my future well-being.

“St Helier Hospital is also where the South West Thames Kidney Fund is based — which I am a committee member of — so it was lovely to be able to stick my head around the door and say hello to them all. It’s always amazing to see and hear about the work that the teams of scientists are doing there, funded by charity work alone.”

Talking to experts
Indeed, Mat’s interest to the scientific community has really ramped up in recent weeks.

“I have been invited to Fife on March 7 to deliver a talk at the Scottish Renal Association Meeting about the balance between regular exercise while managing the side effects of advanced kidney disease,” Mat says. “The meeting involves doctors, nurses and technicians from all the Scottish centres. That will be interesting for me, and with so many people there I’m hoping I might get some answers to the questions I have regarding my own symptoms.

“And there have been other nice developments. I bought an old tandem which I’m doing up with my nine-year-old son Toby. We went on a good three-hour test ride last weekend but realised the 1980s caliper brakes are hopelessly insufficient! It’s great having Toby on board, though; he’s strong enough to help his dad up the hills already. We’ve got big plans for trips away once the tandem is fully restored and I have a new kidney.

“I’m also putting together plans for an official e-bike-based world record attempt to take place this June, which is being supported by — hopefully I can reveal more about that next month. And I made the front cover of the National Kidney Fund Kidney Life magazine. It’s nice to be a cover star, although I’m not sure this was exactly what I ever had in mind!”

Follow Mat’s progress over the coming months here, via, and his follow his daily biking encounters on Twitter via @KalkhoffEbiker.