Questions to ask

[Chelle_]

So I have the information day at Kings on Wednesday, does anyone have any recommendations on questions I should make sure I ask?

You know there is always something you forget when your faced with these things....

Thank you,

Chelle

[AyrshireK]

Can't think of anything other than what the procedure is when the call comes?

Are they going to blue light ambulance you in? We had to stay no more than an hour from home or two hours from Edinburgh whilst hubby was on the list, we had to notify TP co-ordinators if we were staying away from home (i.e. Christmas at my folks bit and alternative phone numbers and address), also had to notify them if hubby had needed to attend GP or had a cold or such like (they might temporarily suspend you from list if you have a bug).

Might also be handy to find out if there is a 'Living on the List' support group or helpline at Kings for those stressful times when you might need a little bit of specific 'waiting' help.

Hope you don't have too long to wait & that when the call comes all goes smoothly towards a good recovery.

All the best, Katie xx

[sheri44]

just write everything that comes into your head. I was told don't go too far even though its a 2 hr drive away. Had to get my own transport there. You do have a bit of them though when it happens. Just have a small bag packed. I took loads didn't need hardly anything. Got most took home n just asked visitors for my stuff when needed. Had a gown on for 9 days before i could wear my own pjs. Hope ur call comes soon hunny. Pls keep us posted ❤ &🙏🏻 xxx

[Millie09]

Oh that's great news Chelle ! One step closer , still waiting to hear of my doctor regarding My referral to hepatologist ! Useless 🙄X good luck

[RodeoJoe]

I remember it like it was yesterday. If you can drag family or a friend along with you. There's a lot to take in but you will also be given packs with most of the information in it.

I was quite ill at the time so needed my other half with me to digest some of the information we were given. There is a lot of detail about the liver and be prepared to be explained the procedure and your first moments when you regain consciousness. Bit scary but as we all already know it's no walk in the park.

I would ask about current research trials. I signed up for one and another guy on this forum (Chris) is now on the same trial. There are a lot of advantages to being on a trial, I got some extra drugs that are usually too expensive, and also carried a card with my consultants number to call whenever I wanted for advice. Also on the back of my particular trial I have reduced my immuno suppressants down to below 'normal' levels. They'll explain these drugs to you as well.

[sheri44 in reply to RodeoJoe]

ahhh i got offered the trial but got my transplant super urgent. Got the letter of acceptance when i got home. I was poorly and couldn't take much in I had to take my dad as I'm alone with my kids and he had to take the info in. Did get loads of paperwork to read and info just couldn't even read them i just slept . Very grateful for the care i received before and after my transplant. 😀

[jojokarak]

Hi chelle, they are really good at informing you of everything you will possibly need to know, like you have been advised if anything how insignificant it seems write it down as they do give you so much information if you try and remember the questions you will forget.. they will give you transplant book 1 which usually answers everything anyway, but you will be given transplant co-ordinator number and you can ring them anytime. do go with someone as the only piece of information which blew my mind was how long they expected my liver to last without a transplant after they informed me off that every question I had went right out of the window... all the best hunni and fingers crossed your not waiting too long xxx

[PeterP54]

Ask about post surgery pain relief. I found myself tripping out on morphine and certain events that I was sure were really happening were just imagined. This was with a self administered morphine pump that I was assured I could not OD on and was encouraged to use. Good luck.

[retwos in reply to PeterP54]

Gotta say the vivid dreams weren't nice as well as the morphine ,but it's something we have to go through eh

[PeterP54 in reply to PeterP54]

Ooops

Just re-read my post and it could be interpreted in a bad way. Apologies to anyone who did that. Was just meant to prepare you for what might happen so that you are not alarmed if you suffered in the same way I did. Genuinely, good luck and hope all goes well.

[Catfishjumpin]

Best wishes for tomorrow❤️️

[Hidden]

You are right to anticipate and I agree with suggestions about writing questions and taking support. My experience was that you got more information than you could process at the time but I was also given written materials to have a look at after the meeting. And there is always this forum ...

[Chelle_]

Thanks everyone, my other half keeps telling me not too worry - easier said than done. He is coming from Belgium tomorrow to be with me and I am taking my sister as well. xx

[Dulux]

Being totally honest I didn't really take much from it, I got much more useful info from a friend whose had a transplant. The only thing it brought to my attention was that I've had a lot of muscle loss, and that your heart is obviously a muscle and your lungs are driven by the diaphragm, I don't know why it just sparked me into ensuring my fitness should be as good as possible. The chairs are fairly uncomfortable and it's a lot of death by PowerPoint presentation. That's how I found it.

[sheri44]

how did it go hunny? Xxx

[Chelle_ in reply to sheri44]

Just information overload....and now it's just the wait....I had a nap earlier and my phone started ringing - I nearly wet myself lol xx

[sheri44 in reply to Chelle_]

awww bless. Everything time the phone goes from now on you will do that. Stock up on the tena ladies hunny 😂😂. Hopefully you won't have to wait long. In my thoughts and prayers ❤ 🙏🏻 hugs xxxx