Pre transplant assessment

[Carterc1]

Hi All,

Just got my date through for Leeds for pre transplant list assessment.

I’ve had all my scans/tests done while in York hospital but realise I might need to have some of the repeated.

Just wondered if anyone else had experiences to share and in particular at what stage do you have to have a family member there?

Thanks

Craig

[1football]

Hi Graig

Nothing in the assessment is intrusive about the only thing that actually hurts is the blood gas test in your wrist that smarts a bit but only for few seconds, I had ultra sound,ct scan,chest x Ray a lung function these are spread over couple of days along with meetings with co ordinators ( transplant nurses) consultants,a surgeon and anesthetist sounds a lot doesn’t it but it goes really quick, you can have someone with you through all of these tests and chats, I went in on the Wednesday and got answer on the Friday afternoon but guess all hospitals are different hope this helps and good luck

Huw

[Carterc1 in reply to 1football]

Thanks huw, that’s really helpful . I’ve had all those tests done apart from the blood gas one but not concerned if they need to do a couple again. I’m currently in York hospital again waiting for an abdomen drain, been here since Monday! Hope all is ok with you!

Craig

[Identity75]

I was in a similar situation to you, had all my tests done at Kings and then moved and had to go to Leeds. If I remember rightly they redid a couple of the tests but certainly not the whole whack again.

On a side note Leeds are incredible. Such a lovely bunch of people. Hope it all goes well.

[Carterc1 in reply to Identity75]

Thanks for your response identity. It’s understandable if they have to repeat a couple of tests. Great to hear how good the Leeds staff are, I’ve heard a lot of good things about them. Hope all Is well with you! Craig

[Identity75 in reply to Carterc1]

If you’re on FB there is a great St James Liver Transplant Support Group.

[Carterc1 in reply to Identity75]

Yeah JoJo kindly introduced me to that when I joined this site. It’s great to feel there is support out there

[Kate50]

Hi carterc1, if you mean at what stage of the assessment process you have to have family present in my case it was at the end of the week when they had a final meeting and discuss the results and whether you are to be put forward for transplant but that was in Edinburgh, not all the hospitals are the same, also Edinburgh redid most tests and scans, they said they liked to have their own results, good luck 🌸🌸

[Carterc1 in reply to Kate50]

Thanks Kate that’s great, I’ve heard of different information days etc but just wasn’t sure when they had to be there. Hope you are keeping well!

[Kate50 in reply to Carterc1]

Hi Craig, I’m doing fine, thanks for asking, I went through the assessment process 3 times before I had my transplant, it is a great opportunity to get loads of information from all different people, from medical staff to other patients, I’m sure you will do fine, I think I read an earlier post from you about swallowing pills, I too was like that and I spoke to a counsellor about it and I’m happy to say I can swallow a handful of pills at the one time now still amazes me 😃😃

[Carterc1 in reply to Kate50]

Hi Kate, glad to here you are doing ok.

Yeah I’ve always been unable to swallow tablets they just stay on my tongue no matter what I try. That must make a big difference for you now being able to swallow

[AyrshireK]

I was there all week with my hubby at Edinburgh apart from when he was away for tests, scans etc. Hubby has issues with concentration, memory and giving out and taking in information so I was with him all week during his assessment to help him go through the whole process.

Katie

[Carterc1 in reply to AyrshireK]

Thanks Katie, touch wood I’m lucky that I haven’t got HE at the moment but if I did then it would be totally understandable that someone needs to be there to make sure they have all the info they need. Hope your hubby is as well as he can be!

Craig

[Kristian]

Hi Craig,

If its a three day assessment, its good if your main caring relative can be there throughout. There is a lot of info shared which is as useful for them as it is for you. My sister found it most helpful.

Good luck.

Kristian

[jojokarak]

Yay at last Craig 😁 and you will find out on a Monday after your assessment they always do consultant meetings on a Monday... Hopefully they have sent you the information about the hotel on the hospital grounds .. when is it ?

[Carterc1 in reply to jojokarak]

Hi JoJo, it’s on the 6th April. Not had the letter yet as I’m still in York hospital but will hopefully have plenty of info with it.

Hope you are still feeling better with your iron!

[jojokarak in reply to Carterc1]

Bit of a dip but I suppose it's normal until things level out but still better ... If no information on about the hotel let me know and I will pass it on and not long to go x

[Carterc1 in reply to jojokarak]

Thanks JoJo helpful as always! Sorry for late reply I’ve had a rough 24 hours

[mschantelle]

Hi carter,

I’m 2 years in from diagnosis ..end phase failure , I had my assessment at kings college who were great apart from one miserable cow I annoyed with my lack of sleep 💤 don’t know why I bothered her I never asked for anything but anywhoo I found it very well organised and thorough,

I regret not writing down everything I wanted to ask because my mind goes completely blank when they speak in person so maybe it’s an idea to put your thoughts on paper.

I didn’t make the list unfortunately but that’s neither here nor there.. the experience was comfortable. Good luck with everything x

[Carterc1 in reply to mschantelle]

Thanks mschantelle that’s reassuring. I know what you mean about lack of sleep annoying some nurses ive just experienced that this week as I’ve been walking the corridor with cramp.

Hope you are doing ok?

[mschantelle in reply to Carterc1]

Health wise I don’t necessarily feel like I’m facing imminent death, my biggest problem is adjusting to being constantly tired 💤

It’s hard to find motivation at times, I’ve also gained 2 stone in weight as I’m normally very very active.. I have great difficulty with that as I’ve always been extraordinarily slight.

My biggest fear is that I often feel like I’m slipping through the net, for one reason or another I have not had medical attention since August except for my medication which is delivered, many times blood tests and scan results have gone missing and now both hospitals I’m under have presumed the other is giving ongoing care.. meanwhile back at the ranch I’m frustrated that they tell me I’ve got 2 years to live.. 2 years ago and nobody seems to be remotely interested in monitoring the situation. I’m currently dealing with the matter myself and have finally got an appointment with kings at the end of April but being alone during this scary time is not good for the head, I need a little dose of reassurance x

[IPCN]

Like Katie I also stayed with my hubby for the full week at Edinburgh. He was having a severe bout if HE for most of the time but managed to complete all tests and I was allowed to accompany him at all times. They did not repeat endoscopy etc as they had been recently carried out at our local hospital. Very grateful to all the wonderful staff and having my hubby listed.

[Carterc1 in reply to IPCN]

Thanks ipcn! I do have people happy to be with me and support me but sometimes don’t like to get them too involved unless it’s absolutely necessary. I guess I’ll just wait and see what Leeds say but it’s great to read other people’s experiences.

Hope you are doing ok!

[IPCN in reply to Carterc1]

I understand what you’re saying about not getting others involved as it’s important to maintain and respect your privacy especially at this time. Good luck with everything, hope things go well?

We’re now post transplant, very early days !! Hoping for a good recovery and future., fingers crossed! Take care x