Holidays!

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Holidays!

Postby Mattock » Fri Dec 30, 2016 1:46 pm

I realise I'm being very dense, but I couldn't see any way of adding a question about holidays without starting a new topic.................which I realise it isn't! Sorry!

I'd be very grateful for any advice/direction anyone might be able to give concerning holidays/travel abroad. We are in the process of organising a self-drive holiday to Italy next June, and are comfortable with that, as we will be able to take sufficient supplies for the journey, and will then have a Baxter delivery to the villa.

But it's the holidays involving hotels abroad that don't seem to be quite so straightforward! In general, I'd like to know how co-operative people have found hotels to be about receiving supplies from Baxters 3 days before ones arrival? And more specifically, can anyone say which countries they found easiest to visit, and even are there hotels they can recommend?

We've travelled extensively pre-dialysis, and thought we were fairly confident sort of people, but this is proving a challenge..............or maybe we're over-thinking it!
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Re: Holidays!

Postby Dibs » Fri Dec 30, 2016 2:32 pm

Hi Mattock.
I flew out to Lloret earlier this year. I emailed three hotels to see if they could store boxes. One replied the same day to say it was ok. One replied about a week later to say it was ok. The other didn't reply. I went with the one that replied quickly as I was hopeful they would respond equally quickly when I checked if the delivery had arrived. They did and the holiday dialysis went well.
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Re: Holidays!

Postby Mattock » Sat Dec 31, 2016 2:48 pm

Thanks Dibs, that sounds like a sensible approach!
Maggie Mattock
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Re: Holidays!

Postby Mattock » Sat Dec 31, 2016 2:49 pm

Me again - did you actually describe to the hotels exactly how much space the supplies would need? I was thinking it might scare them off!
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Re: Holidays!

Postby Dibs » Tue Jan 03, 2017 1:08 pm

I went on manual changes and my nurse changed my regime so that I needed less. Mine was a short break and I only asked them to look after a couple of boxes.
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Re: Holidays!

Postby Mattock » Wed Jan 04, 2017 8:59 pm

OK, I guess short breaks are much less trouble! We've just booked a cruise (not our style, but worth a try!) and the company seems very switched on to dialysis needs, and have been very helpful. Other than that, we've planned a driving trip down to Italy in June, but will carry everything with us.
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Re: Holidays!

Postby Birdman » Thu Jan 05, 2017 6:57 am

I am pleased you did start a new thread, as I didn't know where to post or look for my question.

Mine is a different problem, but still holidays.

I haven't been on the board for several months, as I have had the summer from hell. Several infections, resulting in long hospital stays and having to change to haemo. I have a neck line at the moment, but will be having a scan for a fistula next week.

Both Mrs B and myself have always enjoyed a few days away from home. We are not being unreasonable, we only want a few days here and there in the UK. But trying to arrange holiday haemo is turning out to be a nightmare. We have friends in York where we have always gone regularly. From where we live it is too far to go for a weekend. But the whole of Yorkshire seems to be a no go area for holiday dialysis. Nowhere we can find does holiday dialysis at all. Even London is a nightmare. It is beginning to seem to us that we can only go to places for 2 nights (my longest consecutive number of dialysis free nights in a week), so can't go far. Dialysis Freedom say that odd places like Bournemouth could probably accommodate us if we picked a week when they have space - but we don't want to go to Bournemouth.

Can others please tell me how they deal with holiday haemo dialysis, and if they know of units in London and Yorkshire that take holiday dialysis patients?
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Re: Holidays!

Postby wagolynn » Thu Jan 05, 2017 4:42 pm

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Re: Holidays!

Postby Birdman » Fri Jan 06, 2017 2:31 pm



Yes, but thanks anyway. The York page actually says they will not take any holiday dialysis.
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Re: Holidays!

Postby Pinkdiamonds14 » Fri Jan 06, 2017 11:12 pm

Hi Birdman

I'm sorry to hear that you've had such a difficult time of late.

Have you seen this for London:-

http://www.guysandstthomas.nhs.uk/resou ... alysis.pdf

It may also be worth ringing the York unit to ask if they know of any other units in Yorkshire offering holiday dialysis.

I hope 2017 is a better year for you.
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Re: Holidays!

Postby Birdman » Sat Jan 07, 2017 7:25 am

Pinkdiamonds14 wrote:Hi Birdman

I'm sorry to hear that you've had such a difficult time of late.

Have you seen this for London:-

http://www.guysandstthomas.nhs.uk/resou ... alysis.pdf

It may also be worth ringing the York unit to ask if they know of any other units in Yorkshire offering holiday dialysis.

I hope 2017 is a better year for you.


Hi Pinkdiamonds, and thank you for your good wishes. I am not sorry to see the back of 2016 I can tell you.

Thank you for the info, but again holiday dialysis places are as rare as hens teeth at Guys and it's satellites. As to York, the nearest unit that might - and only might - have an odd place in 2017 is over 2 hours drive from York. So not at all suitable.

I have tried Dialysis Freedom, who are lovely and very helpful, but if somewhere doesn't want to take holiday dialysis, there is nothing they can do.

I am seriously thinking of seeing my MP to request that the situation of holiday dialysis is looked into. After all, it does a patient's wellbeing good to have a break.
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Re: Holidays!

Postby Mattock » Tue Jan 10, 2017 10:18 am

Hello "Birdman",

I'm the original poster on this particular thread, having been seeking advice - ANY advice! - on travelling with my husband's peritoneal dialysis. Strangely, yours is the most helpful reply so far, in that it points out to us that no matter what issues we're encountering trying to arrange holidays, they are much less than yours!

We're certainly not ungrateful for dialysis, and know that it's essential and unavoidable, but we've really struggled to get concrete advice from anyone when it comes to holidays. We chose peritoneal dialysis because we were told that it was easy to travel with it, and having read your posting I realise that's true - and knowing that your situation could arise for us at any time, we will be making the most of our situation at the moment!

There seems to be a lot of positive propaganda saying "it's easy to travel with dialysis" (and we believed it all!), until you're looking for specifics, and then no-one seems to want to commit. Including Baxters holiday team, I have to say - there seems to be a lot of sitting on the fence.

We have decided to do a self-drive holiday in Europe, taking with us as many supplies as we can. Whilst on peritoneal dialysis, did you travel far? And did you take your machine (NOT the most easily portable of devices when one's not in the first flush of youth - no-one told us how heavy everything is!!!!), or do manual exchanges?

I'm really not moaning, as we're very grateful for the treatment, and we'll sort it in the end! Thanks again for putting our "problems" in perspective for us, and I hope you get your issues sorted. Hopefully there will be some facility to do home haemodialysis in the not too distant future?

Maggie and David
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Re: Holidays!

Postby Birdman » Tue Jan 10, 2017 6:45 pm

Mattock wrote:Hello "Birdman",

I'm the original poster on this particular thread, having been seeking advice - ANY advice! - on travelling with my husband's peritoneal dialysis. Strangely, yours is the most helpful reply so far, in that it points out to us that no matter what issues we're encountering trying to arrange holidays, they are much less than yours!

We're certainly not ungrateful for dialysis, and know that it's essential and unavoidable, but we've really struggled to get concrete advice from anyone when it comes to holidays. We chose peritoneal dialysis because we were told that it was easy to travel with it, and having read your posting I realise that's true - and knowing that your situation could arise for us at any time, we will be making the most of our situation at the moment!

There seems to be a lot of positive propaganda saying "it's easy to travel with dialysis" (and we believed it all!), until you're looking for specifics, and then no-one seems to want to commit. Including Baxters holiday team, I have to say - there seems to be a lot of sitting on the fence.

We have decided to do a self-drive holiday in Europe, taking with us as many supplies as we can. Whilst on peritoneal dialysis, did you travel far? And did you take your machine (NOT the most easily portable of devices when one's not in the first flush of youth - no-one told us how heavy everything is!!!!), or do manual exchanges?

I'm really not moaning, as we're very grateful for the treatment, and we'll sort it in the end! Thanks again for putting our "problems" in perspective for us, and I hope you get your issues sorted. Hopefully there will be some facility to do home haemodialysis in the not too distant future?

Maggie and David


Thank you for your consideration of our situation.

I think there is a lot of luck in who you deal with at your renal unit when it comes to holidays on PD. We were very lucky. The Senior Sister in our PD unit was extremely helpful and supportive for patients taking holidays. We had our supplies from Fresenius, and as long as they had enough notice, they sent supplies to our hotel, and kept us informed about who had accepted them etc. etc.

At this point I have to say we never travelled abroad, and I admire you greatly in doing that. I think you are very brave. We were lucky in that we had travelled all over the world before dialysis, and we made a conscious decision not to travel abroad a couple of years before dialysis started, when it was inevitable that dialysis was definitely going to happen. Also, our regular trips in this country are to York and London. In each case we stay at a Marriott Hotel where we are well known. They always handled our needs beautifully, and stored the supplies prior to our arrival. We didn't take a machine to London, as it was OK to do manual exchanges. But we did have a machine in York. We didn't have to take our own; Fresenius delivered one before our stay. We just had to take the treatment card. That said, taking all the other stuff took a lot of luggage space, as Fresenius only delivered the machine and boxes of fluid.

We had no choice about changing to HD, but like you we believed the hype about travel, and being able to arrange HD at a unit away from home. It just isn't true. In theory maybe, but in practice it is a nightmare. You would think it is easy to arrange in London wouldn't you? No it isn't! And York simply does not take holiday dialysis patients, even though they must have their own patients going on holiday. We keep trying to get something sorted out so we can simply have a few days away, instead of 2 nights (the maximum number of nights between dialysis sessions), but are actually being made to feel guilty that we are well enough to want a holiday. Mrs B particularly is getting very upset by this lack of facilities. We have even been told "most patients are too unwell to travel" which is apalling. BUT apparently it is often easier to arrange HD abroad!

Sorry to moan, but - as you have already found - don't believe all you are told. Dialysis is very difficult for everyone involved, and the hype can give false hope, which isn't helpful.

Oh well, fistula creation tomorrow..........................
Birdman
 
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Re: Holidays!

Postby Mattock » Tue Jan 10, 2017 8:35 pm

Hi,

I certainly don't think you're moaning, just telling it as it is! I'm just relieved to know that we're not alone in believing the hype, and then swiftly realising it's not exactly true! Certainly we're very interested to learn of your current problems, and feel that we will definitely do our darnedest to get some holidays under our belt whilst still on PD. Like you, we've travelled extensively previously, and we're not ready to give up yet. I'd like to think that if we manage our two planned holidays, we'll have something useful to share with other PD patients - even if it's a disaster, I guess! I'm really in huge agreement with "Mrs. B" on this whole holiday thing, being the "Mrs. M" of this partnership!

And we can empathize with the fact that you're being made to feel guilty - I definitely get the impression from some people that holidays are considered a bit frivolous! We did notice a few years ago when we were in Barbados, that there were several private dialysis clinics advertising their services, and that the local hospital had a special sign for "holiday dialysis patients". How safe or good that would be, we have no idea. But someone must know?

For PD patients, it would be nice if there was some sort of home swap system here in the UK, maybe?

We are immeasurably grateful for dialysis, and all the care we're getting, but have felt that we seem to be continuously re-inventing the wheel over very simple things! We're sure that everyone has had the same issues, but there doesn't seem to be any centralized source of information - a very detailed handbook would be good! As far as diet goes, we found a very good book published by the dietitians at St. George's Hospital in Tooting, which we were able to buy on-line - much more helpful than the little leaflets given to us by our renal unit.

Very best wishes for your fistula creation tomorrow.
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