Cycling and renal failure

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Cycling and renal failure

Postby R30 » Sun Nov 26, 2017 10:00 pm

Hi All,

It's been a VERY long time since I posted on here regularly.

Essentially I had a live kidney transplant from my mum in October 2004 that was doing well until I came down with glandular fever a year later, and then had a bout of rejection a couple of years later (lost 50% function in 10 days). Having said that I am very grateful to still be here, and have now taken up cycling as my main form of keeping fit. When I say cycling, I mean not just pootling in to town, but rather I am training for a couple of 100 mile rides next year - and here is where my problem is. I am struggling to find low potassium nutrition to sustain me on my training rides. A few weeks ago I experienced the dreaded 'bonk' (not as exciting as it sounds) on the bike, despite taking on board some energy gels, and my consultant has put paid to me using them again as they are high in K. I've managed to make a couple of batches of flapjacks, but don't want to be eating those for a solid 100 miles. So, my question is for any fellow cycling enthusiasts here - how do you manage to train with low potassium nutrition? I also have to be wheat free (not by choice) so that also has to come into the equation.

If anyone here can give me any advice or information, or can point me to someone who may, I'd be enormously grateful. My consultant didn't know, and the last time I asked my dietician she unhelpfully referred me back to my consultant.

With many thanks,
Ruth
R30
 
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Re: Cycling and renal failure

Postby Chris Wright » Mon Nov 27, 2017 5:09 pm

Ruth,

I also have a tx and cycle.

I used to help run Kingston Wheelers, a 600 member Club in SW London.

I haven't heard of anything quite as tricky as your request but what i might do is post it on my Club's forum, if you don't mind.

There is a huge knowledge base within the Club and someone might come up with something.

And no, the bonk isn't fun.

Also, what is the problem with low K flapjacks?

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 105
Joined: Sun Nov 19, 2006 9:21 pm

Re: Cycling and renal failure

Postby R30 » Mon Nov 27, 2017 9:25 pm

Hi Chris,

Thanks for your response; great to meet a fellow cyclist. Don't mind you posting it on your club forum at all - any help would be greatly received.

There is no problem with the low k flapjack per se, but I'd rather be able to take something other than just them for the entire 100 miles. Sometimes taking on too much sweeter nutrition during longer rides can make me start to feel sick, so I'm looking for some savoury carb ideas as well. As fruit juice or or sports drinks are also out of the question I'm experimenting with mixing 1/3 coke and 2/3 water; this does seem to help with energy and isn't unpleasantly sweet.

Look forward to hearing if your club members have any ideas Chris.

All the best,
Ruth
R30
 
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Re: Cycling and renal failure

Postby rheaybou » Tue Nov 28, 2017 2:55 pm

Will keep an eye on this, I am not restricted on diet but get board of bars and gels when riding.

Depending on requirements would these do? https://www.nugonutrition.com/dialysis-snack/

My main problem is that I have a fairly high dose of bisoprolol for blood pressure and as a beta blocker is stops me getting enough oxygen to the muscles, feels like I have acid for blood for most of my time on the bike. Have a heartrate monitor and it doesn't beat much above 130. I guess thats good for my Kidney, less so for my climbing ability.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1360
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Cycling and renal failure

Postby R30 » Fri Dec 01, 2017 7:05 am

These look great, and thanks for the info. Unfortunately they only ship to the US or Canada and I'm in the UK. Never mind, it makes me realise that there are more products out there than I thought.
R30
 
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Re: Cycling and renal failure

Postby Chris Wright » Sat Dec 02, 2017 11:31 am

Ok, a few answers, in no particular order:

Rice cakes: https://pages.rapha.cc/team-sky/rice-cakes-a-recipe

Chicken/cheese sandwiches, brown bread, with may be tomato slices to keep them moist.

A couple of longer answers:

"For drink she could use the old school approach of mixing a fruit juice (fructose) with normal white sugar and water. In much the same ways he could make her own gels, just put in less water and add some gelatine. You can find recipes online. You can find reusable gel packs online, or just put several in a water bottle and mark it so you know how much carb you are taking on.

For more solid food home made oat or rice based energy bars are good and she can add different things to suit. GCN has videos on making both types of bars. The rice ones are just solid rice pudding basically.

Dried fruit is good - but a lot of it can be high in potassium. It needs to be soft otherwise it's too difficult to eat while riding."

And:

"Ham and cream cheese sandwiches (cut in 1/2 in easy access bags). Or peanut butter. Not sure about no-wheat, but I find bagels and 'sandwich thins' don't fall apart in back pockets.
mini-flapjack bites (I'm too lazy to make my own, tescos ones are a good size)
Percy pigs (easy to get out of a bag and nibble)
And iced tea is a nice alternative for other liquids"

Finally, this:

http://www.performancechef.com/about

https://m.youtube.com/watch?v=JKM7vIiJVho

And for the old who remember and don't mind a salt fest: "mini cheddars or TUC - best thing in the world!"

Hope some of that helps.

If you are coming to SW London or NW Surrey to ride, let me know.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 105
Joined: Sun Nov 19, 2006 9:21 pm

Re: Cycling and renal failure

Postby Rik » Sun Dec 03, 2017 2:55 pm

Ruth!!
wow ...
how wonderful to see your name pop back up again :D :D :D
another old name from the board ... Stevie ...is also a keen cyclist ...
he was in this year's London-Surrey 100 ...
I'll get in touch and see what his dietary planning was ...
Rik
 
Posts: 1706
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: Cycling and renal failure

Postby SteveUK » Sat Dec 09, 2017 8:32 pm

Hi there,

I took up cycling in 2012. I have been doing it on and off every since, and yes I have had much the same problems.

Although I usually take cycling nutrition, except anything protein, I would strongly recommend asking your renal team first. Anything like energy tablets and gels are relatively harmless according to my consultant. I usually take a banana as well. Just make sure you drink lots and lots, stop and rest once an hour or so.

I did the RideLondon, 100 miles bike ride this year. Although it is a relatively easy 100 miles, the challenge is still there to keep hydrated and make sure I keep up on nutrition. It's very easy to "bonk" if you don't keep an eye on it.

Stevie
~I close my eyes, and This Is Yesterday~
Image
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Re: Cycling and renal failure

Postby R30 » Sun Dec 10, 2017 9:47 pm

[quote="Rik"]Ruth!!
wow ...
how wonderful to see your name pop back up again :D :D :D
another old name from the board ... Stevie ...is also a keen cyclist ...
he was in this year's London-Surrey 100 ...
I'll get in touch and see what his dietary planning was ...[/quote]

Hey Rik! :D :D :D

Great to hear from you again, it's been far too long. Yep, I've taken up riding since last posting on the board and am aiming for the Ride London 100 next year, as well as (possibly) the Velo Birmingham.

It's fantastic to see so many fellow cyclists on the board. Having taken up jogging, and then promptly snapping my right ACL on a dog walk, I thought I would try something a little gentler (ahahaha). Gradually building my fitness back up and am enjoying being in the top 10 on a fair number of my local Strava segments now, although no QOMs - yet.

How are you doing since we last conversed in....about...2004? :D
Last edited by R30 on Sun Dec 10, 2017 10:03 pm, edited 2 times in total.
R30
 
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Re: Cycling and renal failure

Postby R30 » Sun Dec 10, 2017 10:00 pm

Thanks for the info Stevie, really appreciate it. Unfortunately seeking information from my renal team has been a little disappointing: my consultant says I cannot use gels, or any other sports nutrition and then referred me to the dietician, while the dietician had no idea and referred me back to my consultant. Cue lots of eye rolling from me and the determination to find out myself.

I've already experienced the dreaded 'bonk' recently for the first time and am very keen to avoid it again. It was interesting to see you said that I should stop every hour, that may be where I'm going wrong. I'm used to putting in 3hrs without stopping, but recently this has become far more difficult, hence me looking at my nutritional needs too. It's a good suggestion and one that I will start using on my next training ride.

Chris: really appreciate your nutritional advice too. Pretty sure I can find myself some gluten-free bread that will hold together well enough for some sandwiches, and failing that I make my own corn tortillas at home so will use them instead. Both consultant and dietician said that fruit juices as cycle nutrition were out of the question due to the potassium content, although I have experimented with both Montmorency cherry juice and blueberry juice as they are significantly lower in k. Rice based energy bars sound like a definite plan and I'll be looking up some recipes on those this week. I'm taking a top tube bag with me to store nutrition in so the suggestions of Percy Pig and ham/cheese sandwiches are sounding like good plans.

Some great suggestions guys, many thanks. I'm very keen to keep up with my training, and hopefully improve my endurance riding. Will definitely let you know how I get on, and will be happy to share any biking related advice with any of you if you need it too.
Ruth
R30
 
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Re: Cycling and renal failure

Postby Chris Wright » Tue Dec 12, 2017 5:43 pm

R30 wrote:I've already experienced the dreaded 'bonk' recently for the first time and am very keen to avoid it again. It was interesting to see you said that I should stop every hour, that may be where I'm going wrong. I'm used to putting in 3hrs without stopping, but recently this has become far more difficult, hence me looking at my nutritional needs too. It's a good suggestion and one that I will start using on my next training ride.


Ruth,

I've been riding post TX since 1989, and Club riding since about 2004. Trust me i've seen this a lot!

When newbies come to our Club, i always say to them, eat or take something in after 1 hour, then every 30 mins thereafter. When i take newbie rides, i always take spare gels/flapjacks etc etc because someone will always bonk.

You don't need to stop as such, just take on some kind of energy. The worst at this are rowers who take up cycling. They are used to 20 mins, at most, flat out. For the first hour they are brilliant, then as sure as eggs is eggs, it all goes horribly wrong.

You really should NOT be doing 3 hours with out some form of food. I won't beat about the bush, that is crazy, and if you ride with others, or in a group a bit irresponsible. They will either have to provide nutrition or ride you back, which spoils there day.

I'm only laying down the law, 'cos i've seen it so much.

Eat, drink, stay safe and enjoy your riding. :D

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 105
Joined: Sun Nov 19, 2006 9:21 pm

Re: Cycling and renal failure

Postby rheaybou » Tue Dec 12, 2017 10:56 pm

Chris Wright wrote:
R30 wrote:I've already experienced the dreaded 'bonk' recently for the first time and am very keen to avoid it again. It was interesting to see you said that I should stop every hour, that may be where I'm going wrong. I'm used to putting in 3hrs without stopping, but recently this has become far more difficult, hence me looking at my nutritional needs too. It's a good suggestion and one that I will start using on my next training ride.


Ruth,

I've been riding post TX since 1989, and Club riding since about 2004. Trust me i've seen this a lot!

When newbies come to our Club, i always say to them, eat or take something in after 1 hour, then every 30 mins thereafter. When i take newbie rides, i always take spare gels/flapjacks etc etc because someone will always bonk.

You don't need to stop as such, just take on some kind of energy. The worst at this are rowers who take up cycling. They are used to 20 mins, at most, flat out. For the first hour they are brilliant, then as sure as eggs is eggs, it all goes horribly wrong.

You really should NOT be doing 3 hours with out some form of food. I won't beat about the bush, that is crazy, and if you ride with others, or in a group a bit irresponsible. They will either have to provide nutrition or ride you back, which spoils there day.

I'm only laying down the law, 'cos i've seen it so much.

Eat, drink, stay safe and enjoy your riding. :D

Chris


There is a lot of interesting stuff in that post. What I struggle with most is fuelling, not that I can’t/don’t want to eat but eating around anti rejection meds. On big rides/sportive it means a two hour gap in fuelling. Sure I can take meds early, but au am training for big summer rides in France and need the miles/early weekend starts around familiy/club rides. Three times up ventoux will require an early start and the energy stores will run low.

Prefer not to have gels as they are not easy on the tummy and normally make a flapjack/energy bar at home to control what’s going in(plus cost is much lower than buying them)

Any tips from a long time TX cyclist??
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1360
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Cycling and renal failure

Postby Chris Wright » Wed Dec 13, 2017 9:21 pm

Ruth (i hope that's your real name),

In helping, the problem i have, is that i am on very old medicines and i suspect you and most on this Forum are on very different meds to me.

I'm on Prednisolone and azathiaprine, cyclosporine was just being discovered back in 1981, and whilst they have a lot of long term nasty side effects, i can at least eat anything, at anytime, after them.

From your comments, the implication is that you have to wait 2 hours before eating.

I wish i could, but i don't know how to help on that. I would say though, once you can eat, take in loads of calories! I have ridden with a lady who represented GB at her age group in International Triathlons and another lady who was the second fastest rider in both London and Surrey a few years ago. They both swore by the traditional cyclist snack when they bonked- full fat coke and a Mars Bar! Do NOT be frightened about eating too much on long rides.

If i can console you, i regularly, say 3 or4 times a year experience the dreaded bonk. Mainly whilst trying to keep up with younger, lighter, fitter and faster riders than me (basically who isn't?) as we come back from say Windsor to SW London averaging about 25 mph! I get back to Kingston , say goodbye to them and then crawl the 4 miles home, the last mile uphill. :cry:

Doing the 3 routes up Ventoux in a day is a fantastic challenge, chapeau to you for even attempting it.

If there is anything i can help with, please let me know.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 105
Joined: Sun Nov 19, 2006 9:21 pm

Re: Cycling and renal failure

Postby Chris Wright » Wed Dec 13, 2017 9:23 pm

p.s. to inspire you!

https://www.youtube.com/watch?v=HUWCeAzkc2Q

This was done with the help of a couple of my Club Mates and actually appeared on our Forum a couple of weeks before going public. It's epic!
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 105
Joined: Sun Nov 19, 2006 9:21 pm

Re: Cycling and renal failure

Postby rheaybou » Thu Dec 14, 2017 7:26 pm

It’s an hour before and after medication that I don’t eat. So it’s two hours without energy. Training during the winter on a smart trainer, so doing hours of grind during the two hour time unable to fuel should help train body to go hunting for fats to burn. Been looking at bonk training methods also, 1-2 hours early morning without eating at 75%, but won’t start that till spring.

The Boris bike up the main route is very motivating, plus I was born and still live in the village Tommy Simpson lived for a large part of his life. After all I have gone through three times up in a day as a big two fingers up to Renal failure will be nice. Will leave something from the village for him.

Any spring training plans/guidance your club guys have for the upcoming challenge would help.

Thanks in advance.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1360
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

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