Skiing and other energetic activities!

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Skiing and other energetic activities!

Postby Dixie1 » Thu Mar 06, 2014 3:22 pm

Hi all

I have recently returned from another fantastic week away skiing and, as is normal for me, have already started yearning for next year's trip and wanting to start planning it! We have always enjoyed a winter holiday skiing more than a summer holiday lounging on the beach but I am wondering how long I will be able to manage it. We also really enjoy walking holidays with the dogs and other energetic type activities. My question is, can any of you give me some idea of how long I will manage these kind of active holidays (particularly the skiing)? For the first time ever, I am hesitating before booking next year's trip for example. My kidney function is still pretty good (GFR around 20). However, looking at my Renal Patient View, going back over years, from the time my GFR dipped below the 60 mark, I can see I lose approximately 5.5% a year. I know that there are some years that this can stabilise and stick. I also appreciate I could get a bug and lose a huge amount in the space of a few weeks. But - should the 5% trend continue for me and I find myself this time next year with around 14/15%, would I still be able to ski like I do now??

I am very aware that to some of you, who are struggling with dialysis/seriously low function and just trying to manage getting through an ordinary day, this question may seem incredibly trivial/self indulgent! :? However, I really love to do these things and next year I turn 50 and would very much like to plan a couple of great activity trips, before my kidneys finally give up all together! Therefore, I would love to hear from anyone who can offer their own experience.If not specifically about skiing, if anyone can tell me whether there is much difference, energy wise, between 20% and 14/15% that would be helpful too! I have PKD. Thanks! :D
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Re: Skiing and other energetic activities!

Postby jbell » Thu Mar 06, 2014 4:43 pm

Hi Dixie if I liked skiing that would sound fab :mrgreen: In my case my energy levels have really dipped from when eGFR was 20 and now 15. I really noticed at 16 and feel pretty ill now, I have CKD. It isnt the same for everyone though, if your energetic now why not stay that way ! Happy planning for your next ski adventure. :D
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
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Re: Skiing and other energetic activities!

Postby jooles » Thu Mar 06, 2014 8:08 pm

Well Dixie - not too sure about energetic activities at the moment - may have to wait until after a transplant - but would really like to know about people's experiences of travelling whilst on dialysis. Quite sad at not planning our annual family holiday and wondering f I can manage anything at all. Desperately longing for sunshine and warm beaches - but I'm sure even the cost of travel insurance (along with having to go in school summer holidays) will be enough to break the bank....
It's been lovely reading about your ski trip - and I think it would be uplifting to hear of people's travel adventures, just to prove it is all feasible!

Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
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Re: Skiing and other energetic activities!

Postby jbell » Thu Mar 06, 2014 9:52 pm

Hi Jooles so sorry to hear you are missing out on a holiday. Would you not consider a hol in the UK ? I have seen adverisements at renal clinic for places that accomadate people on dialysis. I think places abroard do it as well, or is it that you feel so ill you cannot manage a holiday ? I must admit I am going to Ibiza in July but feel so c**p compared to last year I am a bit worried about it and the insurance cost. But then I feel really guilty I dont want to disappoint my husband, its difficult. I hope you sort something out and if not maybe we will have a great summer here. 8)
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
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Re: Skiing and other energetic activities!

Postby MandyV » Thu Mar 06, 2014 10:38 pm

Hi Dixie - I continued skiing right through dialysis - at least once a year and sometimes more. Depending upon how I felt I didn't necessarily ski from first lift till last piste closure (but think I am over that in any case) - so no reason not to continue regardless.

Jooles - what I did with insurance was declare my condition and sometimes found that if I excluded my dialysis (especially in Europe with the reciprocal arrangements) I could get cover for the standard price. I figured that the E111 would cover any kidney related thing if I needed acute treatment until I could get on a flight however took full cover in case of accident, injury or whatever. Sometimes I even got kidney included for standard or very slightly increased premium.

Once you are on dialysis it is worth looking at http://www.stannesdialysis.co.uk/ - it is the old Charing Cross Holiday Dialysis Trust accomodation and free to West London patients but a small charge to others. I have never been there but it is in a lovely location and very well set up - including on site HD facilities and obviously PD supplies should be able to be delivered there too. It is quite popular so you need to book in advance.
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Re: Skiing and other energetic activities!

Postby rheaybou » Fri Mar 07, 2014 11:27 am

I was the king of apres ski before I settled down, in fact my first xmas with my girlfriend saw me jet away to the french alps on dec 22nd with friends......we are still together 6 years later!

While on dialysis I only took holidays in the UK as I was doing PD, took all the stuff with me and I really enjoyed the UK. In fact now transplanted I plan to spend more time here in the UK as it is a fantastic place even when the weather is not so good.

Cant comment on HD in the UK and overseas.

But holiday insurance is free in the UK if you go on holiday ;-)
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.

==
Alports.
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Re: Skiing and other energetic activities!

Postby Dixie1 » Sat Mar 08, 2014 11:20 am

Thanks for the replies everyone. :D

MandyV - what you say is REALLY encouraging and has cheered me up immensely! :D I was concerned that skiing would be a no go by the time I got down to 15%, which I am guessing will be approx a year for me, but to hear that you continued skiing right through dialysis is fantastic!! Can I just ask if you remember how you felt around 15% energy wise? Before you went on to dialysis? I appreciate we are all different but I am just interested.

Jooles - sad that you don't feel able to plan your holiday. :( Maybe you should still look into it? The insurance may not be as bad as you think? You could probably really use something to look forward to. :)

jbell - sorry to hear that you now feel really rubbish. :( Hopefully that sun in Ibiza, where you can truly relax, will go someway to helping you feel good.
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Re: Skiing and other energetic activities!

Postby sporti » Sat Mar 08, 2014 2:36 pm

Hi Dixie

I was diagnosed in 1982 and am now at 14%. I think you might find yourself a little more tired but I can't see it from stopping you skiing at all. In fact we have just emigrated to the Adirondack mountains in USA and I have tried skiing not very successfully though!
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Re: Skiing and other energetic activities!

Postby SKM23435 » Sun Mar 09, 2014 4:51 am

Dixie,

I am quite active and have been wondering what will happen as my renal function declined. No one really seemed able to answer the question. Having been thinking about it, and observing replies to general queries on this web site I've come to the conclusion we are all different. I think other co-existing illness and general fitness all seem to play a part.

I'm 53 years old. My renal function has dropped dramatically recently from eGFR 17 in December to 12 at the beginning of this month. I remain active but find my stamina isn't as good as it was. Apart from my CKD I'm well. I recon I could manage a gentle skiing holiday but would maybe need an afternoon nap occasionally and couldn't manage a full day dawn to dusk. I would go with the idea of gentle skiing and see how I felt day to day. I don't ski any more but find I ache a bit after more vigorous exercise, doing it for a day is fine but every day pushing my self hard for a week would be exhausting.

The other thing that makes a huge difference to me personally is hydration. I do much better if I'm well hydrated. I know this can be difficult for some people but I'm not (yet) fluid restricted and I still pee lots.

Hope this helps.
Let us know how you get on

Sue


Ps I do sometimes wonder how much of my aches is my age and nothing to do with CKD, Peri menopausal woman and all that!
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: Skiing and other energetic activities!

Postby Tibbs » Mon Mar 10, 2014 11:59 am

I did a trip to Thailand the Feb before my transplant in November 2012.

My function was at about 15%. I took it pretty easy, though I managed to do a lot of exploring and diving. I think it's very dependent on the person you are. I listened to my body and took it easy when I needed to.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
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Re: Skiing and other energetic activities!

Postby cazpi » Mon Mar 10, 2014 3:12 pm

I don't ski, but I have had no trouble with running, swimming, aerobics etc at 14/15% (I'm 49). I think it will depend to a large extent on your underlying fitness levels, and whether you exercise regularly generally. I struggled at 11%, but that was mainly due to anaemia. You sound as though you're generally pretty active, with the walking holidays and so on, so you'll prob be fine. Someone who sits on the sofa all year, then leaps up and tries to ski for a week would maybe find it difficult at 15%.
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Re: Skiing and other energetic activities!

Postby Grey » Mon Mar 10, 2014 3:41 pm

My pennies worth...just do not think anyone can swim with this pipe hanging out your side ??? Or am I wrong ? Since I have had the catheter I have sort of vegetated. From a strong (may I say, patting myself on my back, a reasonably handsome fit bloke) to a couch potato. Hmmm perhaps it's time for a burst in life living, I think I will start watching more sport on telly or something.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
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Re: Skiing and other energetic activities!

Postby bigbuzzard » Mon Mar 10, 2014 6:01 pm

When I was on PD in 2006-7, Baxter was fantastic at delivering supplies to France, Copenhagen and Geneva - and I know others here have travelled far more extensively. PD machines can go on Planes (even in the hold if necessary). It still takes a bit of organisation, carrying various spares, etc. But being able to travel relatively easily is one huge advantage of PD over HD. And as long as you have the energy, then skiing is eminently possible. In haste...
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Re: Skiing and other energetic activities!

Postby jbell » Mon Mar 10, 2014 6:09 pm

Grey I have been told by pd nurses you can in fact swim with a tube hanging out your side ! Not sure how because cannot quite remember but if you ask, someone will be able to tell you. You could start by watching the swimmimng and progressing on to the real thing :twisted: I am going to start short walks to my swimming pool and when I learn to breath after the walk I may start swimming :shock:
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
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Re: Skiing and other energetic activities!

Postby MandyV » Mon Mar 10, 2014 8:31 pm

Dixie - if I recall I didn't feel noticeably different as my function deteriorated - it happened slowly so I certainly didn't think that 'now it's time for dialysis' ... in fact after my first tx (which had to be removed after 2 days because clotting had starved the donor kidney of blood and effectively killed it) I got super fit and in better shape than I had been for around 5 years previously when I had been working too hard to think about exercise.

Grey - no reason why you can't swim - you will need to discuss with your unit the protocol around the dressing etc. I certainly swam and learned to dive as well. My unit insisted we cover with a tegaderm dressing (ensuring well sealed) and if I swam in a public pool (rather than the sea) I changed the dressing immediately afterwards. I went on a number of beach holidays (though I don't advise wearing the tegaderm dressing all day as I did on one holiday - I developed an allergy as a result!) and the day I spent at the Water Park in Orlando with the family was a particular highlight.

I firmly believe that we should try and do as much as we can on dialysis - life goes by quickly enough without self restricting ....
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