We have just got back from eyeing the Heptologist and he is sending my husband for assessment for transplant. The Cambridge team do two clinics at Queens Medical Centre in Nottingham. He said in his opinion he will be accepted and put on the list as long as there are no underlying medical conditions.
I am not sure what to think right now but mostly I am worrying if he doesn’t make the list and also if he does.
I hope you see that as fantastic news! I remember that occasion and was so so delighted 👍.
Don’t, please, be worried if he gets on the list, it is such an opportunity it has to be grabbed with both hands, as I’m sure you will.
Good luck to you both!
Miles
Thanks I am now worrying about the assessment I am sure I read that part of it is on a treadmill and he needs two new knees will that go against him? I am pleased then think if he doesn’t make the list what will that mean for him. He has no quality of life he just exists now.
We actually met a chap in the hospital who had had a transplant and he was very supportive and encouraging but Kevin spaced out he said he understood he had been where Kevin is now.
Please think positive until you have a reason not to.
L x
Hi again
There was no way I could have gone on a treadmill! I could hardly walk!! Treadmill was never mentioned. The hardest part of all was having to blow into a pipe to test my lungs. So I really wouldn’t worry on that front. I even fell asleep during the MRI/CT scan. 😀. All very relaxed - well it was at QEHB - can’t think it is any different anywhere else.
I agree with Laura think Positive!!
They have an alternative test for those that can't do the treadmill. I couldn't do it. I was too weak.
But even then freddy the treadmill wasn’t a standard test for you was it? I was only asked if I could do it - of course I said no 😀 - because I had had high BP and diabetes for 30 years. It was called a myocardial stress test and added four months to my Assessment before a decision was made!
I meant that I couldn't do the treadmill because I was too weak and muscle wasted.
I had the myocardial stress test and failed it They had to stop it when my BP dropped through the floor because I was still on BP meds and shouldn't have been 
but I still went on the list and was only on the list 10 weeks 
Oops sorry freddy - didn’t see your earlier reply below 😕...
Hi Pam . This is a massive step in the right direction. You know the wait is going to be a huge rollercoaster ride of emotions as you know from many others on here. But stay strong it's already a great positive especially going through an incredibly difficult time for all NHS staff. I wish you both the very best of luck with the decision and forthcoming transplant.
Laura xx
I first met the Addenbrookes team at Queens Med when I was put forward for assessment.
I was told by my specialist that I would only stand a 30% chance of getting on the transplant list because of my age (68 at that time) the fact that I had been diabetic (type 2) for over 20 years.
I was in end stage liver disease at the time and had HCC (one tumour close to the portal vein). After being ill for over 4 years and 3 of those years on daily chemotherapy I had become quite muscle wasted and weak.
I was accepted for "Work up" and I actually failed one of the "Work up" assessment tests.
I am now 19 months post transplant and doing very well.
Think positive and try not to worry unduly.
Wishing you the very best outcome.
Alf.
Thank you so much for sharing your story. I can’t begin to tell you how much it has helped me.
I hope you don’t mind but I read your message out to Kevin.
I am so pleased you are doing well, thank you x
No that's fine, I meant you to tell him.
I, like Kevin, was merely existing and I was so elated to be told that I had been accepted on the list.
As I said, stay positive.
Everything crossed for you both
Alf.
Good news that he could be put on waiting list but also worrying g for you. Take one day at a time and wish you both the best for the future. You will be ok.
Hi there. I went through what you may have to a year ago. I too am at QMC. Yes, it is a long process, involving CT, ECG, lung function tests and (lots) of bloods. I didn't need a treadmill. I was successful and spent 2 days at Addenbrookes (they have rooms to stay overnight) and met surgeon, anaesthetist, transplant co-ordinator, psychiatrist.. basically everyone involved.
Hope that wasn't too much 🤯.
It does feel a bit like going for an interview.
Please look on it as good news, although I know it's a lot to take in and worrying.
Just take it day by day.
Good luck honey, I wish you all the best. 🤗
Hi Marty thank you for sharing your experience I keep saying it but hearing real experiences really does help and encourage. Last night Kevin said what will happen to me if I don’t have a transplant and all I could say was you stay as you are now which is not a great place. This morning he had really strong tremors his whole body it was quite scary to see. I dread to think what it would be like if he doesn’t get on the list.
All very scary for you both, I had my assessment last November, I had non alcoholic fatty liver disease diagnosed end of aug 2019
The assessment was very intense both physically and mentally lots to take in but All the transplant team were excellent and explained things very clearly
At the end of the 5day assessment I thought maybe I would but offered some from as medication as pre August I knew nothing about my liver being diseased
Final meeting after assessment was with Surgeon and Consultant and as I said thought maybe meds but no straight to the point felt it best I go onTransplant list, gobsmacked I was, but without hesitation I excepted
I am really fortunate 20 days later got the call They Had a Liver
I understand your worries and concerns, it’s is long hard recovery but be assured if your husband does need Transplant he will be taken care of pre and post transplant
Try not worry and stay positive got me through it ( I am 60yrs old)
All great advice and so true, it look me a few years to get there, but it was two years post transplant yesterday.
I have a new life back I am sure it will be for you to
David
Thank you David and so uplifting to hear you have a new life x
Hi I had my assessment at Addenbrookes, 3 days as an inpatient (I think it's done as outpatient now but they have flats you can stay in) lots of tests, blood, lung function (blowing into a tube not treadmill or bike ) ct scan, ultrasound of heart, chest x ray, talk to coordinators, surgeon, dietician (measures muscle strenght) and someone from ALTA (Addenbrookes liver transplant association) . Non of the tests are invasive although they did say about an endoscopy but i had one the week before at Norwich. On the third day they had a multi disciplinary meeting and came and told me I needed to go on the list and was fit enough. Had my transplant may 2017.
Hilary
Thank you for sharing your experience it really helps to talk to be people who have been there. I am so pleased you are doing well. xx
Hi BS1524
I cannot add to the amazing amount of lovely messages of advice you've already received from my friends, but I do know they'll all be by your side to lesson your worries.
Please take care
Love Trish x
Hi Trish,
I know everyone here are so lovely and encouraging I cannot tell you how reassuring it is to know that there is support.
Pam x
The addenbrookes team are absolutely amazing I was extremely worried when told I needed a transplant due to HCC (cancer) and even more so not knowing if I’d get on the list but they really cover every worry you may have no matter how trivial you might think it is,make a list of questions and ask them everyone of them and believe me they would of been asked them same questions hundreds of times.
The assessment is long and somewhat boring but not intrusive and you won’t be forced to do anything your not happy with to be honest the worst thing I found was the blood gas test where they take blood in the back of your wrist and that’s over in seconds.
I wish you all the luck in the world on your journey it’s certainly a rollercoaster but with help and support from family an friends you will get through this, this group has helped me so much so please use it we are all behind you
Am 22 months post transplant
Huw
Thank you so much for sharing if it wasn’t for everyone on here I am not sure what I would have done. We don’t have any support really my FIL is caring for his partner with dementia and at 86:I don’t want to worry him. My sons would like to help but not sure what how they have young families of their own. My employer has been brilliant but when you shit the door it is just me and it does get worrisome trying to care for my husband especially right now he seems to be having a HE episode.
Sorry I don’t mean to be poor me just the load gets a little heavy x
It’s not poor you at all,get it off your chest and share your worries/frustrations on here we all understand.Am assuming his medical team know about his HE?
Yes the Heptologist on Thursday made sure he had a good supply of Rifaximin but this morning he seems really confused, he fell as well and worryingly seems to have really excessive saliva sorry if TMI but he is drooling. We did mention it on Thursday but consultant more concerned with referring him to the assessment team.
The rifaximin does take a little while to kick in well it did with me,certinally worrying times for you,you could try and contact the team or your clinical nurse but might struggle at weekends, have you an assessment date?
Liver Transplant Assessment appointment
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