Hey 13.5, personal question I know, but are you still on HD or have you had a transplant? I am going into hopsital tomorrow to have a catheter fitted for Peritoneal Dialysis and was wondering how easy you found riding with stage 5 failure. if you dont want to post publicly feel free to PM me.

Pete

yeah its been about a year now since Ive had the transplant from my dad and I'm just now getting back on the horse so to speak. once you start the dialysis you will feel 100 percent better. give it a few weeks to get used to any hygene issues with the plastic bits sticking out of your body. I gave myself a nasty infection that made me feel as if I was going to die. once the blood cleaning kicks in your energy levels will begin to return and if you push it little by little you can do a fair days riding without to much hassle. Took me about 3 months to get freeriding again. I found that I needed to eat almost constantly as nausea was a bit of an issue. I believe the belly bags( forgive the term) are a bit more gentle on your system so i think you should be fine. keeping your self in the best shape possible will make you dialysis easier and your eventual transplant much easier too.

If you find your self in the woods and suddenly feeling like crap and no energy DO NOT PUSH IT. Take food and drink with you. You will most likely be on a low phosphate diet but lucozade and nuts always worked for me in addition to the normal water. If you have a fluid allowance, remember that you are gonna be sweating out any excess so stay hydrated but dont over do it. If you ride with friends, make sure they are no competative types. To be honest most blokes dont manage it very well so having a freind that will sit by the trail for a half hour with you without giving you grief is worth its weight in hydro fluid.

As your going to have a cath in your abdomen, your gonna have to take extremely good care not to get it infected. thats gonna be on the more bendy parts of your body so make sure you get the stitches out and are totally healed before you think about getting on a bike. Thee hospital should give you lots of sterile whash, pads, and waterproof coverings if you need them and it will be a good idea to take somewith you when you go riding in case anything weird happens. Keep your spigot safe! A good judge is that if you can have sex, you can ride a bike so test it out with your partner and you be the judge. I hope this helped and if you have any questions post or mail me. I'd be happy to answer them all.

a transplant kindney charity ride...sounds like a great idea to me. My kidneys failed quite suddently but it was only when I started dialysis and later had the transplant that I realized that I had been in decline for about 6 years. my initial perma cath was located on my chest but it was still a few weeks before I could turn my head past 90 degrees. Bit of an issue when cycing Ive found. You have any family members who might consider being a doner?

Where do you normally ride?

My wife took the blood test but was not compatible, I don't any other close family to speak of. Had my dressing changed today and the incision is healing up nicely but stings like hell now!

I was thinking of doing the 7 stanes in 7days or a coast to coast when i am fit enough. I usually ride in Hamsterley, Dalby and travelled up to Glentress, Newcastleton and Grizedale for a bit of variety but quite happy to tavel for decent trails.

I have known about my condition (Polycistic Kidney Disease) for about 13 years now but been symptomatic for the past 3 years. Keep in toch and we will see what we can sort!!

Hi , great thread - I cant give you much advise on your orig question , but I can sympathise . I use an insulin pump to control my diabetes , basically a small device about the size of an I pod , filled with about five days worth of insulin and an electronic pumping system  , which is attached to my body by a long thin tube with a canular ( f*cking big needle) on the end that is inserted under my skin , and the insulin is pumped along the tube from the reservoir at a pre-set rate that I can adjust depending on weather I,m working out ,or pigging out . I wear it round the clock 24 / 7 and it gets right on my tits, the bendy tube goes into my midriff just above the waist.

It took me ages to find somewere to carry the pump when biking , thank god for the waistband pocket in FOX,s high frequency shorts , but as far as the canular needle  goes I can pretty much site that where I like .

What I can tell you is that with any illness  fittness and a positive attitude are a great help , and biking delivers on both fronts ..oh and  no matter what you do - keep it clean , coz this is one dirty sport .

good luck with it mate .   P.S.   Good news is it works like a dream , one big needle every four days is better than four a day every day

What about looking at the Dainese Impact Jacket. 

Its short sleeved looks well ventilated and has a removable wave back protector plus its moulded plastic for the padding so should serve you well.

Hope this helps.

cheers for the good wishes TS1 I on't like big needles so hats off to you on that one, that why I have gones for a tube out of the stomach!! are you in the North East?? should hook up for a ride if you are,.

13.5 have got used to looking after the bloody thing, no sign of me starting Dialysis yet, Creatine at 605 but no nausea or weight loss yet (I could do with the weight loss!!) have eventually got out on the new bike (seee dream bike thread) and can ride withoiut discomfort, even managed a ladder drop at Hamsterley! (only a little one mind!). I did feel dizzy and slightly sick after a pedally downhill section on Sunday so took your advice and had a rest and a flapjack!

 My riding buddy is calling the live transplant co-ordinator this week so hopefully he will be a match.

Good for you. Glad to see you out and doing things. Happy to hear your not having to many symptoms yet as well. Things were literally falling off me by the time they wheeled me in to have my various plumbing installed. Its really good to see that your friend wants to be a doner. Thats awsome. Having a live organ transplant really makes a huge difference to the recovery so good luck with that. As soon as I get my new botton bracket in I'll be hitting Delamere. attempting to loose weight. Thing about the rejection drug regime: you get fat pretty fast.

I am pretty fat allready so I hope my new found vigour when I do eventually get  a transplant lets me ride like a b'stard to shift the weight!!

I have been managing to get out 2-3 times a week, nothing epic, just 10 or 12 miles or so to build the fitness up, cant resist hitting the technical stuff though and I am surprised by the fact I have no discomfort whatsoever. I had a stack last Tuesday on this:

I managed to leave the bike just by those rocks on  the left of the picture and instinct kicked in. My Camelbak saved me a lot of pain and I came away with grazing to my right side, all I could think about was

a: My bike!!!!! 

and

brotect my left hand side!!!

I am still not symptomatic enough to start dialysis but I am having such concentration problems that they may start me on it.

Ouch that looks pretty painful. Hope your not missing too much skin. I try to get to the woods 3-4 times a week as well and the weight seems to be finally coming off. Others have always been a bit critical of it but I always where my 661 2x4 arm and leg set when in doing xc and race set when I'm doing anything else. I was in Wales the other week at coed y brenin dong the Temtiwr trail. thing is i read the map wrong and missed the relatively gentle singletrack at the beginning. Instead i ended up climbing to the top and doing the rocky, steppy, twisting sinletrack descent that finishes below the visitor centre. Thankfully and surprisingly I managed to not come off and clean the whole thing but the whole time I was paranoid that i would and damage my new organ. It was the one day that didnt have my roost guard on me. I truely love my norco. That hill in the pic looks well awsome though. You ever get any air off it?

I am sorry that your concentration is beginning to suffer. My mental abilities began to deteriorate about 3-4 months before my kidney function stopped all together. I got to the point where I had to stop my freelance design business cuz I just wasn't getting the jobs done and I basicly forgot about 3 years worth of coding experience. I forgot how to freeride as well so it can get pretty bad. It get a a lot better when you start to dialyse though.

no, never tried to get air off it. Too busy trying to stay on!! Thought I might of got air lifted off as I went over the bars but that is a different thing alltogether!! That is just the second half of a descent called Doctors gate that starts on the moors and is basically a rockier version of that.

Well done on cleaning that trail in Wales, it is sometimes better when you hit them unexpectedly like that, you tend not to think about it that much.

I need to get back out but it looks like the weather is going to spoil things soon