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For those who don't live near their transplant hospital how did you cope with the logistics?
Hi i know many others like myself have to travel a long way to their transplant hospital. I am due to be admitted soon for transplant and wondering how you coped with the logistics of it all.
What did you take with you and how did you manage with clothes washing etc, I am thinking I will have to get family members to use a laundrette or weekly relay of taking my clothes back home.
Travel is also an issue as I will have to get family members to drive a long way between 5 and 7 hours each way, I will be buying them a sat nav to make it a bit easier! I have been looking at rented car spaces also as the hospital car park is tiny.
What did you take with you and how did you manage with clothes washing etc, I am thinking I will have to get family members to use a laundrette or weekly relay of taking my clothes back home.
Travel is also an issue as I will have to get family members to drive a long way between 5 and 7 hours each way, I will be buying them a sat nav to make it a bit easier! I have been looking at rented car spaces also as the hospital car park is tiny.
Best Answer
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Hi Becky
It sounds like you are making some good plans already. Your transplant staff should be able to help with what you need to take in with you. I had my own room and was told that I could personalise it with anything reasonable eg photos ,new books, even my own bedding if I wanted! I knew I was going to be in isolation for at least a month but I didn't have the difficult logistics you have. I live about 3 miles away.
I'm not sure what your hospital is, I was at The Christie, Manchester, my wife used to talk to another patient's wife who visited from about 70 miles away. Occasionally that visitor stayed in a local hotel which the hospital recommended and had some arrangement with. Maybe you could check with staff at your unit. We now have a new unit which has accomodation available to family/carers. My unit also has its own Independant charity, it exists to provide financial assistance to patients and carers who may be having difficulties with travel costs or other issues. They are there to support the patient through a difficult time, your hospital may have a similar scheme.
Hope all goes well.
Peter.
Answers
Thank you for replying. The hospital i will be having my transplant in is Kings college in London I live 280 miles away, driving in London is a nightmare and such a long way, hence investing in a sat nav. I have a partial help certificate but obviously that only covers part of my costs and not relatives, I will look into carers help with costs.
We are lucky in that we have the use of a flat about and hour away from the hospital for some of the time. The hospital does not have accommodation for relatives but does have a list of b & b's but in London everywhere is so expensive!
Best wishes
Becky
The cost of travel to hospital appointments and parking fees can be a real burden for patients and their families.
If you have a look on our website you can find out about grants and financial support that you might be eligible for.
http://www.anthonynolan.org/patients-and-families/life-after-transplant/adjusting-life-after-transplant#Grants
Best Wishes,
Billie
Wow, that sounds tricky. I agonised for a long time over where to have my transplant done but all of my options were about an hour away so a slightly different scenario. Stupid question but is it essential to have your transplant at Kings? Are there any specific medical reasons for doing this? You are entitled under NHS Choices to select a centre of your choice so there could be somewhere just as good a little closer to home.
Can the hospital give you any help? I ended up having my transplant at The Churchill in Oxford and they were very good with patient support. I ended up being issued with a car park permit for three months which I gave to my wife to use although finding a space was a struggle at times. Can the hospital provide assistance with things like laundry? Is it possible to set up a camp bed in your room so that visitors can stay with you?
Good luck with your transplant,
Rob.
Thanks for replying
Kings was my best option as they have the knowledge about my illness where as closer hospitals do not, I have GATA 2 deficiency I'm sure you have never heard of it I certainly hadn't before being diagnosed and a lot of medical professionals haven't heard of it either.
The carpark at kings is very small so even with a permit I think it would be near impossible to park, It is something I will ask them about though
As for laundry no there is not a service apart from the hospital towels etc that they provide.
I don't think there is room for a camp bed small rooms and also The infection risk etc
Best wishes
Becky
I had a distance from home to my transplant centre too but not to the extent that yours is. I live in Northampton and was treated in Leicester so it was a journey up the motorway of about 30 miles each way for us.
At first I was apprehensive as it meant I was unable to see my wife and boys each day, but in the end I think that was something of a god-send as it allowed them to carry on with a more or less normal routine and just see me at weekends. I guess it left me feeling a little isolated but I called them or skyped them each evening to keep in touch. Had I been treated in my local hospital I think it would have been a lot more disruptive coming to see me each evening.
Parking at Leicester isn't brilliant but is probably better than Kings. Is using the train or tube an option at all rather than driving? It may also make the journeys for your family easier and more direct rather than having to navigate through central London.
In terms of laundry and other bits and pieces my wife used to bring me a clean set of clothes each week and take my laundry home which seemed to work well. Most of the time in hospital there wasn't much need for a lot of clothing due to the warm environment so for me it was usually a variety of T shirts and shorts or jogging bottoms with socks, undies and nightwear so I didn't have much bulk in laundry going backwards and forwards. For the trips where I went home I usually saved what I'd come to hospital in on one side so that I had shoes, jeans and a coat to wear whilst travelling.
I'd suggest that you need to think about what visitors you might want to see, partly because of the logistics but also for infection control. The more people you see whilst your immune system is affected the more you might open yourself up to infection. For me I kept visitors to a minimum as my treatment progressed, restricting it just to my wife and boys as my transplant drew near. In the early days my parents came to see me as did other friends. When I wasn't feeling so well I didn't necessarily want to see many people anyway.
Hope this helps.
All the best,
Steve