Transplant: Hi again, Was at consultant... - British Liver Trust

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Transplant

Yuiop profile image
26 Replies

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.

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Yuiop profile image
Yuiop
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26 Replies
AyrshireK profile image
AyrshireK

Best wishes, you/he will be in good hands at Edinburgh.

Katie

h0b0 profile image
h0b0

Wishing you both all the very best. Stay strong . All worth it in the end. xx

GrandmaDylan profile image
GrandmaDylan

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

🇧🇧

mrsmerlin profile image
mrsmerlin

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

IPCN profile image
IPCN

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

Adelou profile image
Adelou

Hoping all goes well

Divg profile image
Divg

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.

Yuiop profile image
Yuiop in reply toDivg

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

AyrshireK profile image
AyrshireK in reply toYuiop

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

Yuiop profile image
Yuiop

Problem is thT he can hardly walk the length of himself. I see there are busses every 10 mins from waverly

AyrshireK profile image
AyrshireK in reply toYuiop

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.

Yuiop profile image
Yuiop in reply toAyrshireK

I don't know how to go about getting hospital transport, I'm from Fife

AyrshireK profile image
AyrshireK in reply toYuiop

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

Yuiop profile image
Yuiop in reply toAyrshireK

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.

AyrshireK profile image
AyrshireK in reply toYuiop

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

Kate50 profile image
Kate50 in reply toYuiop

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, 🌸🌸

Yuiop profile image
Yuiop in reply toKate50

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.

Kate50 profile image
Kate50 in reply toYuiop

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

Yuiop profile image
Yuiop in reply toKate50

But would I be able to go with him if it's hospital transport?

Kate50 profile image
Kate50 in reply toYuiop

I’m not sure I used to go on my own but I think if he needs you for help then they can allow it you should give them a phone n ask nothing to lose, and it would make life much easier x

Yuiop profile image
Yuiop in reply toKate50

Thanks Kate, good thinking x

Kate50 profile image
Kate50 in reply toYuiop

Another thing there are quite a few bus stops you need to make sure you are at the right one I think there are 4 maybe ,

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

Yuiop,

Best wishes for your husband and you.

Mary

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