advice

[Lippy42]

morning everyone my question we live around an hour and 40 mins from QE bags are packed ready for when the call comes Did anyone take their bags each time they went for appointments with not living close by incase the call came 🙄

[AyrshireK]

We took a bag everywhere we went when hubby was on the list. No harm in keeping it in the car plus have your plans made for what will you do when call comes.

Katie

[Lippy42 in reply to AyrshireK]

well up to now if ste gets called I think once he goes into theatre then I will start looking for b&b on a bad day it took me 3 1/2 hours to get to QE so I plan on staying close while he's in hospital.

I just need to add a few bits then our bags are good to go

thanks for replying

[AyrshireK in reply to Lippy42]

Do they arrange blue light ambulance for your hubby at QEB to get him there? Edinburgh said we had to remain within an hour of home at all times and hubby would be blue lighted with me following later - I was fortunate in being able to site our touring caravan about 15 mins from RI of Edinburgh so me and our cat had somewhere to stay - as it turned out he obviously never go the call but we used caravan as a base for regular hospital appointments up until him being delisted. Although we are a hundred miles from Edinburgh we've a very poor road network from our place - coast to coast really. We have to stay over in Edinburgh for appointments as hubby (and I) can't manage there and back in a day so I tow c'van over there now each trip & we make a mini-break of it. LOL.

Best wishes, Katie

[Lippy42 in reply to AyrshireK]

no I'll have to drive him Dr said it use to be no more than 2 hrs away but no saying 3 to 4 is OK also if we are stuck in traffic just let them know think it's with the profusion machine they put the donor organ on gives them more time

[Porcupine_Tree]

If I managed to get a lift , I take my bag

take my bag.

 I live 2hrs away, it's stressing me out how to get there and back every week for 4 months post TP. Taxi is £430 return!!

[AyrshireK in reply to Porcupine_Tree]

Explore the possibility of help from the Transplant Patients Trust - they can help with financial support in funding transport to and from hospital. transplantpatientstrust.org...

Also, I wonder if you have any agencies near you with volunteer drivers - I have a friend who volunteers near me taking cancer patients to and from their treatment/appointments.

Transplant team social worker may be able to help you seek support for transport to clinic appointments post - op.

All the best,

Katie

[Lippy42 in reply to Porcupine_Tree]

thats a lot of money . It's not just the operation it's the finance that also causes stress .hope you get sorted and good luck

[Huggy7614]

hi Lippy,

We live about 2 hours from QE too. More importantly than a bag for me would have been a bag for my other half. I went into theatre at 8.30 am, and she then had to get accommodation sorted, which she did easily at a premier inn nearby. I didn’t really need my bag for a couple of days, whereas she needed hers immediately!!

The transplant co-ordinators stressed to me pre transplant that if we had trouble getting there they have contacts that they can call on, including blue lights.

Just consider that my call came at 10pm, I was asked to be there around 1am, and op was at 8.30am.

The very best wishes to you both.

Andy

[Lippy42 in reply to Huggy7614]

glad to hear you have had your gift I hope your doing well 🥰 can I ask when you were discharged did you go straight home only I've read some people have appointments 2 days later so wondered with being so far away would it be easier to stay close by them first few days

[C1JAM]

no.

[Huggy7614]

Oh I went home!! I was so desperate to get home!! I think we were back three days later for follow up bloods. Then it’s weekly. It all depends on what day you’re released and when the next clinic is. I think they have clinics twice a week!!

Without a doubt going back home and coming back a few days later was the best thing to do. Ste will really want to see normality!! (Well the new normality!!)

You probably won’t want or be able to spend every day up there. I was in for 9 days and my partner made 3 additional trips up to see me.

Remember to bring a pillow with you when you pick him up - he will need it for his tummy. I had to have that whenever I was in the car for a couple of weeks!!

Andy

Pm me if you wanted to chat about things.

[Lippy42 in reply to Huggy7614]

thanks andy

[Yellowsydney]

had my transplant at Addenbrookes, I live 2 hours away never thought of taking a bag to pre transplant appointments. Got THE call at 4am and told to get there at ASAP, they did offer to send an ambulancebut my husbanddrove me, arrived just after 6 as there was no traffic about went to theatre at midday, there really is no need to hurry as you are called before the liver is retrieved from the donor and there is a lot of waiting about, 6 hours is a short wait, my liver only came from 2 miles away. My husband went home as soon as I went into theatre and I told him not to come back until I was fully awake 2 days later, he visited nearly every day but had to go home for our daughter. I did keep telling him not to come as all I wanted was to sleep not talk to him.

I was advised to take a bag to post op appointments as they can keep you in but only time I was called back was the day after an appointment when they had blood results back.

if you use Facebook please join our friendly and knowledgeable group called liver transplant support uk.

[Lippy42 in reply to Yellowsydney]

thankyou and hope your doing well

[Bikafella]

I was at the Royal Free London (about and hour and a half by public transport or 40 mins by car from my house) and was aware before I'd get the call that being than 3 hours away from the hospital was not prudent. So we could go away on trips around the SE. When the call did come it was 1 am and they sent a mini-cab for me. At the hospital by 2 am then operation was later in the afternoon (physical checking liver etc). I had a small case ready but for 2-3 days it wasn't necessary as was in a gown and my wife could bring whatever I needed as and when. Don't stress about it unless you're a really long way from home and fresh deliveries aren't going to be easy.

[Lippy42 in reply to Bikafella]

on a good run we are 1 hrh 40 mins on a bad day it took us 3 hr 45 mins the m6 can be a nightmare so I'm trying not to overthink things and will stay in birmingham while he's in hospital.

[Kristian]

Just to give you a bit of context, I received my call about 2 hours after I returned home from a clinic. So may be sensible if nothing else to have one in the car, just in case you have to make your way back on the way home, lol.

When you get the call there may not be a great rush. Basically for me it was set off within the hour sort of thing. I toom about 2 hrs away too. I got at the ozzie about 1am and went down for the op just after 8am. So similar to Huggy7614 .

After transplant you are advised to bring a bag each time just in case, but before its probably not essential, just a nice to have to save a bit of pfaff.

I think you ask also about going home after. I know its probably a bit of a pain going home then coming back a couple of days later, but thats probably the better thing to do. Everything is more comfy at home and everything is more familiar. You're also not quite as concerned about making a mess, lol.

Good luck to you both and I hope you're not waiting too long.

[Lippy42 in reply to Kristian]

thankyou and hope your keeping

[Kristian in reply to Lippy42]

Yep, all is good 😊