[peggyParticipant]

Hi there, not been on here for a long while… my last post didn't register and I let wasn't up to redoing it… let's hope that I manage this more successfully.

I 'd like to go on holiday this year, last year I was too ill, but I've just been prescribed Aranesp EPO which is to be delivered fortnightly and has to be kept in a fridge. I have to inject it two or three times a week taking it out of the fridge about 1/2 an hour before I inject. It can be taken at any convenient time of day as I am led to understand.Has anyone been on holiday taking this? How does one arrange things? Previously we've only been on camping holidays but I'm now more inclined to stay at a b+b or hotel/hostel. Money is not a major problem but we do not have a large income and we most certainly would not consider going abroad at present. (we've also got a 16 year old autistic daughter who thankfully has turned a corner and now is not a lot of a problem but I would still not leave alone overnight)

Anyone got any suggestions… will b+b's store medicines (are they permitted to?),should I take a fridge?, what is the minimum temperature these injections must be stored at. I haven't yet spoken to the nurse but any suggestions received would be welcome.
Best wishes to all, Marion

[BADGERParticipant]

Hello Peggy
We have been away to a B&B twice this year one in Scotland and one in Swanage both times people have asked to keep medication in the fridge if you phone some of these b&b's or hotels they will tell you in advance if it is possible or you could hire a cottage they always have a fridge if you want to go abroad there is a cold pack people use for insulin for travelling that also could be ok GOOD LUCK

jO X

[eveParticipant]

Hi Marion

Just to answer your query ,I use to have a B&B,and have had all sought from guest in my fridge and freezer,most will help you out just ask on booking,if they say no,you would not stay anyway.
What is Aranesp EPO!!!!!!

If you like the Camping,have you thought about,booking through the Camping and Caravan Club,I would look at there web site.Eve

[peggyParticipant]

Thanks Jo and Eve for replying.
#
EPO (erythropoietin) is a hormone which controls the production of red blood cells. This hormone is not getting through to my bone marrow as my kidneys are failing due to the myeloma and I am now anaemic, hence the EPO prescription. I will now have to take this for life. It apparently takes a while for the EPO to take effect and if my anaemia gets any worse, ie falls below 8.00 I will be given a blood transfuion (results on Friday were 8.1 from a previous 8.8). I don't really understand what these results mean but I know that I am always VERY tired and cold and if it gets any worse I am to phone the haemotology department.

I loved camping and it solved the problems we had with taking my daughter away but frankly I think I am too tired to deal with the packing, cooking and putting the tent up now. Also too cold and too achy to go for the walks and the badger watching and star gazing… I am at the stage of sitting down and looking at things … like churches and sculptures… cont

[peggyParticipant]

But it's hard to please everybody. I want to see/ hear the Bourneville carillon but it's only on a Saturday and that would mean my daughter missing her Riding for the Disabled lesson (she lives for animals) but I mentioned it and she seems to accept that we put ourselves out to get there almost every Sat. so I think that I could swing it once.

I was wondering about the cool bag but would it keep the injections cool enough? and for long enough… I suppose I could ask the nurse. Thanks anyway.

Marion

[HelenParticipant]

Hi Peggy
There are some pharmaceutical cool bags available which keep drugs at the optimum temperature during travel etc, I had one at work a few years ago. It would not be impossible to find out from your specialist nurse and the pharmacy department you attend. They are VERY expensive. You might need to approach a local charity to see if they could provide one if that is the only way to travel. However if you are going to a specific place you could arrange to collect your EPO from a local pharmacy as you need it?
Hope this helps
Helen

[eveParticipant]

Hi Marion

The reason I mentioned cc club,is lots of there places have lodges now,so no roughing it.We have a motor home and there sites are good.Follow you own needs,do not worry about your drugs,I am sure any place will help you.

Have a good holiday Eve.

[Author]

Posts