Skiing and other energetic activities!

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Re: Skiing and other energetic activities!

Postby rheaybou » Tue Mar 11, 2014 5:09 pm

I have no idea about the time period my function declined, but I only felt tired/low on energy the week I was admitted to hospital ready to start dialysis. My theory in my case is that the decline was over a number of years and my body adapted, with me never knowing it also wasn't in the back of my mind that I was no longer as fit as I was and put it down to hitting my 30's.

For swimming and a rare bath I was given activity pouches by the renal unit, these are just stoma bags (colostomy bags) so I didn't fancy messing about at the pool washing hands, finding a clean spot in the changing rooms etc to fit/remove one.
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.

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Re: Skiing and other energetic activities!

Postby Dixie1 » Wed Mar 12, 2014 8:18 pm

Thanks guys. There has been some really useful stuff in your replies and it has given me the confidence to go ahead and book that ski trip for next year. Once again, I find some of your reports really inspiring. It really does make me realise that there is life after renal failure.

Sue - so true! I often think the same thing about the perimenopausal bit! I think I get a bit tired sometimes but then half my friends (same age) seem to have even less energy than me!?

Grey - Had to laugh at your 'more sport on the TV bit'. :lol: England v's Italy this weekend!! A good place to start!! :D
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Re: Skiing and other energetic activities!

Postby knittygritty » Mon Apr 07, 2014 2:13 pm

I'm about to begin PD in a months time and my kidney function is about 16 at the moment. I was skiing all season this year and for the last year I have pole danced once a week. Don't get me wrong, I get tired after a while, but as long as you take rests when you need them I don't see the problem and my doctor certainly doesn't either! Seeing as I'm only 26, I feel like I can't afford to sit around and vegetate whilst the world carries on. My life might be at a stand still while I wait for a transplant but I can still enjoy myself and try to keep healthy at the same time.
Diagnosed with medulla cystic kidney disease - Sept 2013
APD operation - May 2014
Sitting patiently on the transplant list
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Re: Skiing and other energetic activities!

Postby JMan » Tue Apr 15, 2014 12:34 pm

My Hb is just above 13 at the moment. Makes walking up our steep hill a doddle!

I enjoy kiteflying, powerkiting included. I think if I didn't live in the city and DID live near a beach I'd be out on a kitebuggy most afternoons:)

Its a hell of a good workout:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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Re: Skiing and other energetic activities!

Postby jamiesav » Tue Apr 22, 2014 2:06 pm

Hi Dixie,

I'm 32 and was diagnosed with CKD in Jan 2011 with an egfr of 22% and I'm now down to 12%. Over the past several years I have tried not to let this disease get the better of me and have continued to ski every year, run several charity races, played 5s, achieved my black belt in karate and was lucky enough to travel to Australia at xmas. You will know yourself how your body is coping and I guess adopting a sensible approach of how you feel each day will work best. I have only really started to notice the tiredness myself within the past 3 months or so when function started to drop below 15%. I'm apprehensive about what the future holds but as many others have said I would rather try and keep as active and healthy as possible for whatever does lie ahead.
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Re: Skiing and other energetic activities!

Postby Dibs » Fri Nov 11, 2016 3:09 pm

I used to ski a lot. I used to enjoy off-road biking until I crashed and spent time in hospital because I was passing blood from my cysts. But now I'm getting the urge to go back skiing. If I do go, I wouldn't be able to just potter round and I'd want to do a lot of skiing to get my money's worth. PD is a chore to arrange, but my main worry is falling over and knocking my cysts or catheter. Does anyone else with PKD have experience of skiing whilst on PD?
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Re: Skiing and other energetic activities!

Postby Dixie1 » Tue Nov 15, 2016 1:42 pm

Hi Dibs

No experience of skiing with PKD whilst on PD I am afraid. I do however have PKD and have been on the deceased donor list (currently suspended due to low WBC) and I am planning to go skiing at the end of January. If I have no luck soon with the transplant, I plan to do PD and hoping to continue skiing despite the PD.

My aunt used to run a ski chalet and I remember her saying she had a guest staying once who was on dialysis. Apparently he went off a couple of times during the week to have his dialysis (haemo).
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Re: Skiing and other energetic activities!

Postby Trisha » Fri Nov 18, 2016 3:38 pm

If you do have to have dialysis but you're put on a transplant list then you need to keep as fit and active as possible. Our two dogs ensured that between dialysis days my husband got some long walks and so kept himself fit enough for surgery. We didn't go down the route of holiday dialysis but we did go on some weekends away. We were able to leave on a Friday afternoon and travel home on Sunday evening so that it felt like a proper mini break. He had a transplant last Sunday and we're hopeful it will be a success.
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Re: Skiing and other energetic activities!

Postby Lynda Rose » Wed Nov 23, 2016 1:05 pm

My GFR is 14 at the moment, and I am so very tired, a little walk in the store is all I can manage
Lynda Rose
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Re: Skiing and other energetic activities!

Postby wagolynn » Wed Nov 23, 2016 1:41 pm

Hi Linda Rose,
I recognise the tiredness but the only answer I know of is to set yourself a realistic 'target for the day'.

This needs to be the last successful days target plus a very small advance on that.

Should the days target not be achieved, it becomes the next days target.

Yes it is hard, and yes you will be able to find thousands of reason why you cannot do this but persist, and you will begin to feel better.

It is also good to occupy your brain while you are resting, a good book, learn something new, initially you could learn as much as you can about your condition, the devil you know is easier to cope with than the one you don't know.

Best wishes.
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