Hi again,
Was at consultant today, grade C cirrhosis. All the complications, so hubby is being referred to Royal in Edinburgh for TIPS and transplant list. No quality of life left in him, and getting drained again in a fortnight. Gonna be some journey, wish him luck.
X
Wishing you both all the very best. Stay strong . All worth it in the end. xx
hoping that everything works out for him. I'm sure he'll be in good hands. Take care. Deb
Good luck to hubby and you. Sometimes i feel its worse for the other half because although present you may not be aware of exact status at any time 😒
Miles
🇧🇧
Wishing you both a short wait. I think that it is very much an experience you share. During the tx in particular while he has a good sleep.
Rita xx
Thinking of you and wishing you both well. You’re in very good hands at Edinburgh my husband had his transplant there 7 months ago. Hopefully things will happen for you quickly? Keep strong, love to you both xx
Hoping all goes well
My partner had his transplant 8 weeks ago in Edinburgh and we've been going to the transplant clinic for nearly 2 years. It's a great team, great hospital. Parking is expensive though.
I was wondering if we could park close by and get a taxi, I know parking is a nightmare! I'm gonna look into it X
We've never had bother getting a space at Edinburgh, ok yes you have to pay for it but I don't feel it's all that expensive. It'd probably be about the same price as taxis & even buses. Full details at:- nhslothian.scot.nhs.uk/Goin...
If hubby is on ESA you can claim back your mileage (and parking costs) via hospital cashier or your local NHS cashier - even overnight costs if you have to stop over for treatment. We take our caravan over each time (as we have a little cat), it gives me somewhere to stay if hubby is kept in. When hubby was on T/P list we even sited our caravan over there for ease.
RI of Edinburgh really easy to get to, straight down the A7 (Old Dalkeith Road) off the ring road at Sheriffhall Roundabout.
Best wishes, Katie
Problem is thT he can hardly walk the length of himself. I see there are busses every 10 mins from waverly
Where are you coming in from? Hospital transport/ambulance also brings people right into clinic if that's a service you could use.
Bus stops, taxi ranks at the hospital are in the same place as the car parks.
I don't know how to go about getting hospital transport, I'm from Fife
You will find relevant phone numbers here :- nhslothian.scot.nhs.uk/Goin... for arranging hospital transport via the Scottish Ambulance Service. Does your hubby have a blue badge from the council for his mobility issues? Should be able to get one and obviously there will be disabled parking closer to hospital doors and you might want to take a wheelchair. Hospital corridors are long at RI of Edinburgh.
You are closer than we are being in Fife, we travel through from rural South Ayrshire.
Wishing you both the best of luck.
Katie
He doesn't have a blue badge, believe it or not he didn't qualify for mobility with PIP. This country is a joke! I'm stressed to the eyeballs with it all, as I'm having to deal with and organise things.
You don't need to qualify for PIP for a blue badge, you can be assessed seperately for one. My hubby doesn't get a blue badge as his physical mobility is fine other than ability to make a journey on his own. He gets PIP - enhanced daily living and basic rate mobility and is no where near as poorly as your man.
Fife Council blue badge scheme is detailed at:- fifedirect.org.uk/topics/in...
When you go to transplant unit there is a Social Worker who can help you with things for managing hubbies condition and support.
Sounds like you should be able to reapply for PIP based on changes in your hubbies health - get help from either Citizen's Advice Bureau or your council welfare rights department to help with the form filling.
Been through several battles with hubbies benefits etc.
Katie
Hi, I would definitely look into hospital transport I used to use it sometimes before I had my transplant, now I get the train into Waverley and then the bus over to the hospital but the bus stop is on the north bridge and while it’s not far, if hubby has mobility issues it would probably be a problem for him, hope he gets on ok, Edinburgh are fantastic, 🌸🌸
Thank you Kate, I was looking into that bus this morning, says there is one every 10mins. Can you tell me the number of the bus, or what destination is on the front please.
Hi, I’m pretty sure the one I get is a no.8 and it says Edinburgh royal on the front but there are loads of different buses and they all go into the hospital, you should definitely look into hospital transport would take some of the pressure off you x
But would I be able to go with him if it's hospital transport?
Wishing you both all the very best. We have a strong support network in Scotland. You may want to contact Amy, our Support Group Facilitator. Here is the link to the groups she runs.
britishlivertrust.org.uk/su...
Warm wishes
Trust1
Hi
I wish you both the very best of luck. The support on here is fantastic
Love and hugs Lynne xxxx
Rejected for transplant
Transplant yesterday 
journey to transplant
Transplant assessment
Transplant assessment 
