# Kidney Dialysis and Motorhoming abroad



## 113016 (Jun 5, 2008)

Has anybody direct experience of Motorhoming abroad while having Kidney Dialysis.
Is it possible using self administered dialysis for longer stays?
Thanks


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## Penquin (Oct 15, 2007)

This link may be helpful;

Renal dialysis

Dave


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## 113016 (Jun 5, 2008)

Thanks Dave, we have researched quite a few similar guides, but they are quite vague, and seem to be full of possible problems for motorhomers.
The only possibility is the portable type, but how portable, regarding weight of and storage of refills How much electricity power would be required, thinking of amperage. What about water?
I just wondered if someone had actually done it and how they managed and for how long.
We have recently had a shock, and we have a very difficult decision ahead.. I won't go into details, but an operation has only, a 50% success rate, and if it fails, a drastically 100% worse situation than we are now in. Basically, no kidney function!
We are trying to look ahead, positively, trying to keep European touring on the agenda, but if not, it would have to be just the UK:frown2:


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## aldra (Jul 2, 2009)

Garth

I would think your consultant could advise you on portable systems

And how much elec power is needed

I notice on daves link it says for people going camping with an elec hookup

But a generator back up may be useful

Holidays in the EU may need futher research

As to whether you can use hospital dialysis on the EU11 card

I'm only guessing insurance wouldn't cover it

I'm hoping you can sort through it

We too are needing to reasses as we never seem to have time between treatments to get away on longer trips 
We find we are waiting for windows which is stupid

A few days in our beautiful Gt Britain is certainly possible

So much we have never explored still out there for the taking

Love to both of you

Sandra


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## Penquin (Oct 15, 2007)

As that link says - discuss in advance with your dialysis co-ordinator who has access to European details and can make arrangements, under the EHIC scheme *EMERGENCY TREATMENT* is covered to the same extent as it would be for local residents....... but may be difficult to access rapidly.....

Hence the need o pre-plan (I know that is an anathema to MH use ) but it should allow you to continue to use your vehicle with the prior planning and arrangements. Power consumption is obviously a consideration and I know NOTHING how much power is used for a dialysis cycle, but would suspect and EHU would be essential for use in a MH.

The volume of liquids to be carried may also be a barrier - again I only know the outlines not the details, but the local coordinator may be able to arrange collection of supplies locally with prior notice and discussion.......

As you rightly say, only personal experience can actually supply the answers, but the number of patients using dialysis in the community is not great so finding one or more with MH use linked may be hard..... but then perhaps your research and advice could be used as a guide for others thinking about taking the same route to enjoyment.....

Dave


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## 113016 (Jun 5, 2008)

Again, Thanks Dave and Sandra. It has been a bolt out of the blue, and we know (or have read) about making forward plans, with reference to delivering dialysis equipment to European accommodation, and arranging a back up at a hospital.
It is too early to get the info from the Consultant as we yet do not have an operation date, but expected this week, and would hope all things go well and dialysis would be delayed, but in the end, it will come to that:frown2:
Yes, a campsite with a good electricity supply would be essential, and not too far from a hospital offering dialysis.
We have read and re read, and I doubt anybody not directly effected, would have read more than we have, and believe me, we have doubts, but are trying to look at how we can do, and not at how we can't
We have a dreaded genny as a back up, we would just like some advice on what to expect.
I am sorry to post such a thread, we did not want to publicise the subject,but it was the only way I
we know to get the advice about European touring on dialysis.


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## aldra (Jul 2, 2009)

Garth

I bet there is a support group on line with a wealth of information from dialysis users

It's amazing how many people share the same problems and find solutions to them

Sandra


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## Penquin (Oct 15, 2007)

Grath said:


> I am sorry to post such a thread, we did not want to publicise the subject,but it was the only way


You have absolutely no need to apologise for starting such a thread - to me such things may well be of benefit to others who may not yet know that they will face such a challenge, or to others who have faced it but were not able to obtain the information and reassurance that they need.

I, and every other member of MHF who reads this thread, hope that your situation will be resolved and that you can find out the information that would make life much more comfortable for you to enjoy travelling again.

One thing to beware of is that in France MANY campsites close on August 31st - they assume that everyone has finished by then irrespective of the high temperatures and sunshine frequently found (around here anyway) at that time..

Such threads provide a valuable resource for many people - so you should never feel concerned about starting one IMO.

Dave


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## waspes (Feb 11, 2008)

I don't know about other countries but we where watching a Benidorm ER programme last week and clinica Benidorm does it on your ehic card. 


Peter.


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## HermanHymer (Dec 5, 2008)

Graham, so sorry to hear about your dilemma. My thoughts are with you and your wife and hope you find some solutions that make touring possible. Good luck and all the best!


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## 113016 (Jun 5, 2008)

Thanks Dave and Sandra, dialysis would mean a considerable change as we are usually off grid using aire's, although over the years, not recently, we have used Municipal sites, and again, we are well aware about closing dates, but Thanks for pointing it out!
We are still hoping it will be later, rather than sooner, however we are on a fact finding mission, so that we know what we CAN do, and try to pre-empt any possible hurdles.
To complicate matters, my pc is new, on Windows 8 and not behaving well at all:frown2:
Back to subject. When it happens, we hope to carry a portable system, and we also hope to carry enough fluid packs for longer tours, maybe not touring as we used to, but campsite hopping, with the odd aire. We do have the geny for a back up, and we are aware of low electricity amperage on many sites.
We do have lots to learn, but at the moment we are in shock!
As I said earlier, we didn't want to publicise this, but I thought somewhere on here (facts) someone probably has the exact information, as only motorhomers know motorhome issues.
Thanks again for the support!


Thanks for the support!


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## HermanHymer (Dec 5, 2008)

Graham remember ACSI sites. I use them throughout the year, as a quality yardstick, but of course the agreed tariff only applies off-peak, the dates of which vary according to the region.


The majority stay open well into September. Facilities are usually excellent and reliable. I always use the **** sites. *** are usually fine too. Read the comments and facilities detailed in the book. That is a dead giveaway of the quality. 


Beware sites where the comments are about the views. It means there's nothing good to say about the site facilities. The tariff (E12/14/16/18) vs quality is pretty consistent.


And my personal yardstick... if you pay peanuts you usually get monkeys.


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## aldra (Jul 2, 2009)

we always enjoyed aries, stellplaz wildcamping etc

But if I'm honest

I am beginning to prefer campsites, well some and CL and ASCI sites in particular

I don't know if it's because I'm getting older so find staying put in a bit of space relaxing
And of course with a MH if you don't like the site it's easy to move on

Not interested in the facilities, we have our own, just like a secluded plot, some walks around, and now if Albert ever passes that scooter test some transport 

Now the first time he was 1 k short of the speed on the swerve

The second time he knocked a cone

The third time

Is this Friday 

I'm not so sure he should do it but the wound looks well healed and he says he feels fine

Wants to get it in before the radiotherapy

So cross fingers and toes

If he fails I'm going to take the test, after I divorce him!!

Ah, I rode a scooter for years you doubting lot

Garth, my love, life will go on, once the shock subsides you will find all manner of ways to overcome it

You and Mrs G together

And of course you should post on here
I'll bet you would be surprised how many of us have relatives /friends on dialysis

It's a small world in the end

Sandra


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## 113016 (Jun 5, 2008)

Sandra, give Albert our GOOD LUCK wishes with his test


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## aldra (Jul 2, 2009)

Garth

I will

He had better pass

He has a road test to do next

And you two
Keep in there 

It will not be as bad as you think

You will get over the shock and begin to think straight

Believe me 

I know how frightening every thing is in the beginning

And yes it can be frightening again and again

But if you think back

How many things were

And you are here you survived them all

Mind you I'm still trying to survive my kids

I'm bypassing them and moving on to the grandkids

Although a few of them I'm eying up

It's not looking good
I want them to have minds of their own

But not pitted against mine
Sandra


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## 113016 (Jun 5, 2008)

I apologise for bumping this thread, but I need to ask again, is there anybody with direct experience of portable dialysis while touring with a motorhome?


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## aldra (Jul 2, 2009)

Garth

I may well be so wrong but,

Slow down

Take each stage a step at a time

Remember I gave Albert 6 months from the tone of the docters and went into panic mode 

And he is still very much here

As you say it may or may not be needed

Find your peace
Certainly search possibilities

Now in the very beginning I was thinking funeral arrangements 

Stop, think and then just enjoy

When or IF the time comes for dialysis

Is soon enough

Sandra


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## 113016 (Jun 5, 2008)

Sandra, dialysis IS coming, we hope not soon, but it could be in only a few weeks. We seriously hope NOT, but better to get the facts early so we know what to expect!
All I am asking for is has anybody done it with a M/H and how did they get on!
Nothing more, nothing less!
Surely someone on here must have tried it with a portable system!


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## aldra (Jul 2, 2009)

Garth

Maybe not

And I am feeling a bit of anxiety 

So listen
I'm not the greatest 
To help

But I am here 
Just calm

I wish I could say put it in Gods hands

With provisos 

But I cant,
Listen

Take a deep breath

Look at each other

And know

Whatever it takes you will do it together

And just do it

It's what we do

It's how it is

It will work out

Sandra


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## suedew (May 10, 2005)

Grath, are there any posts on the old site about this? Seem to think this came up many years ago had a look but couldnt find one apart from for someone coming here. wonder if this article will help point you in the right direction.

http://www.kidneypatientguide.org.uk/hill.php

Sue


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## 113016 (Jun 5, 2008)

Thanks Sue & Sandra
Sue, a good link!
We are not really anxious or panicking, or desperate, we are just after the info as motorhoming is such a BIG part of our life, and after retirement a few years ago, we have got used to extended touring and OFF grid!
From the information we have read, we will be able to tour for two week and maybe three, the big problem seems to be storage or I should say the weight of the dialysis liquid. Although we do have a m/h with a large garage, it can only take so much weight, but we could distribute some up front.
Another thing we could do, is chuck out all the extra stuff we carry for wilding, as we would need to use campsites for the hook up. We sometimes travel with up to 150 litres of water, which if using campsites we could considerably reduce and replace the saved weight with dialysis refills.
We could even change vans and get a box trailer. As I said earlier, it is not a case as we cant't do, we are looking at Yes we can!
OK, with luck, very early planning. We have a 50/50 chance that dialysis will be required in a few weeks (immediately after the operation), or a very few years, depending on the operation.
I expect, we will have to suck it and see, starting with the odd couple of nights away at a localish campsite.
At least we are thinking positive and are not thinking of giving up M/Hing


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## Penquin (Oct 15, 2007)

Start local and work further must be the best way to tackle the challenges.

Go for it, you may find things have to be cut short, or you may well find that many potential worries are not as severe as you thought.

Facing dialysis is a difficulty that few of us will have to face and all we can do is wish the best of luck, the lack of response from others who have been there, got the T shirt and everything else, probably reflects the small number of people in the community needing such a process and combined with the (sadly) declining number of participants on MHF may well tell it's own tale......

Good luck and do keep us informed, that may be of help to others who have to face that situation in the future,

Dave


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## 113016 (Jun 5, 2008)

Dave, I think that with a M/H it will probably be easier than sorting hotels out.
Bearing this in mind, I am surprised nobody has direct information


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## Penquin (Oct 15, 2007)

I did used to know 2 people at different times who required dialysis, the first was the Head of Department in the school I joined as an NQT, he had been on peritoneal dialysis for 14 years - a record apparently, and went on holiday at every possible opportunity although these gradually became less and he eventually went on to a dialysis machine - but he still went abroad, with the portable machine in the boot and came back refreshed....

The second was nothing like so successful, he went on dialysis for about 4 years then had a transplant which was rejected then a second became available but sadly, the anti-rejection drugs were nothing like as refined as they are now, sadly he succumbed a year after the second transplant......

It is possible to travel with dialysis, it simply needs careful planning, but using a MH is something that neother of those people did as they were rarer then than they are now (we are talking 40 years ago now......).

Dave


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## 113016 (Jun 5, 2008)

Thanks Dave
I didn't know that had portable dialysis machines 40 years ago. I bet they were pretty BIG:serious:


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## 113016 (Jun 5, 2008)

Well, we have an operation date and a small window for a short trip. So ferry booked and off we go, today!
Probably the Mosel and maybe a little further, maybe the Main and Necker!
So I renewed subs early and no problems doing that!
Bye for now!


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## suedew (May 10, 2005)

Have a great time, leave any worries at home.

Sue


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## MotorhomingH (Jun 26, 2012)

*dialysis at home and abroad*

Yes we have experience of motorhoming with dialysis. Glad to say my husband has now has a transplant but did motorhome for many years whilst on dialysis and also it is never too far away even post transplant so happy to share experience if wanted.

Helen


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## 113016 (Jun 5, 2008)

MotorhomingH said:


> Yes we have experience of motorhoming with dialysis. Glad to say my husband has now has a transplant but did motorhome for many years whilst on dialysis and also it is never too far away even post transplant so happy to share experience if wanted.
> 
> Helen


Thanks Helen for your post. I would contact you by pm, but I don't think you will have the pm facility until you are a full member or subscriber!
Sorry your husband was in a similar situation but pleased he has got past it and has the transplant. 
We have done lots of research, but we have not as yet spoken to anybody who has been through the situation.
If you would care to text your number to my mobile, 07709 291079, I will return your text with a call. 
Thanks for your reply
Graham


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## Penquin (Oct 15, 2007)

AFAIK the PM system is ONLY available to fully paid subscribers so hopefully you will get a direct response, it MIGHT be possible to leave a message on the person's profile as a "Visitor message" - I am not sure as that is a new possibility, but worth exploring.

Go to their name, click on it and then the profile page will open and that option MAY be available - I am not sure how much it is used though....

Good luck,

Dave

I have just checked and YES that system IS available so I have left a message advising her to have a look at your message.


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## 113016 (Jun 5, 2008)

Penquin said:


> AFAIK the PM system is ONLY available to fully paid subscribers so hopefully you will get a direct response, it MIGHT be possible to leave a message on the person's profile as a "Visitor message" - I am not sure as that is a new possibility, but worth exploring.
> 
> Go to their name, click on it and then the profile page will open and that option MAY be available - I am not sure how much it is used though....
> 
> ...


Thanks Dave, I have left a mobile number, and I would much rather speak than text. With luck, Helen will texl me and I will ring her.
Thanks again


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## MotorhomingH (Jun 26, 2012)

*Motorhoming on dialysis*

I am new to this forum and it seems this may be the last post I can make. Will have to look into subscribing and how to do it.
Anyway I was thinking of writing an article on dialysis and our experience in a motorhome and googled the subject and that is how I came onto this thread. Would be glad if our experience could benefit others.
We are currently debating whether we can take up a planned trip across the channel as Husband not well (even post transplant things are never simple!). Have already postponed it a week but decision to be made this weekend.
Anyway been motorhoming 12 years plus and many of those were fitting around dialysis and treatment. Included lots in this country but also in France. There are different types of dialysis and how you manage would depend on the type you have. Not sure if you have any say on the type of dialysis you have. Anyway more than happy to share but not sure if I can submit any more posts on this forum. Have passed my details onto Dave.

Helen


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## 113016 (Jun 5, 2008)

MotorhomingH said:


> I am new to this forum and it seems this may be the last post I can make. Will have to look into subscribing and how to do it.
> Anyway I was thinking of writing an article on dialysis and our experience in a motorhome and googled the subject and that is how I came onto this thread. Would be glad if our experience could benefit others.
> We are currently debating whether we can take up a planned trip across the channel as Husband not well (even post transplant things are never simple!). Have already postponed it a week but decision to be made this weekend.
> Anyway been motorhoming 12 years plus and many of those were fitting around dialysis and treatment. Included lots in this country but also in France. There are different types of dialysis and how you manage would depend on the type you have. Not sure if you have any say on the type of dialysis you have. Anyway more than happy to share but not sure if I can submit any more posts on this forum. Have passed my details onto Dave.
> ...


Hi Helen, a BIG THANK YOU for the reply. I think you meant you have passed your details on to me graham (grath). Thanks again, I will most certainly be calling you for any advice and tips. 
Lets hope, you both manage to get away, without any more delays, and have a great chill out tour.
Thanks again


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## 113016 (Jun 5, 2008)

Again, thanks very much for the insight and you experience, and nice to talk to you. Great to hear that dialysis did not stop your motorhoming, although I gather it can be very difficult at times.
We are gathering as much information as we can and as mentioned, the operation went nearly as well as could be expected, three days in hospital for a stent to be fitted. The immediate need for dialysis has been overcome, but unfortunately, may not be far away. We now have a little breathing space, and after the medication settles down, a Euro tour will be on the cards. 
We must take the opportunity, when we can!
I sincerely hope you and your husband manage to get away and have a great holiday
Thanks again!


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