So finally today we had our face to face with hubby’s liver specialist after a lot of inconsistent care and back and forth to the hospital and drs. We finally got to see someone that actually knows my husband and she was genuinely shocked at his deterioration.
She had not seen him for 14 months. After going through our extensive list of symptoms and problems my hubby is having he is being assessed for a transplant.
They’ve booked him in for a colonoscopy to find out where the bleeding is coming from, signed him up to a nutritionist and has another drain and extensive bloods on Monday.
His specialist said that he’d be a very good candidate for transplant as he is relatively young (48) with no other underlying health conditions and he’s not drunk any alcohol for nearly 4 years and he has a good support network around him.
Was just wondering what other people’s experience of assessment and transplants are.
Would very much appreciate any info or feed back
This is all a little daunting 😟
Katie xx
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Spamberella
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Glad to hear he is being referred for transplant assessment & so he should be.
Assessment has two major parts - tests to ascertain whether transplant is indeed indicated and tests to ensure he is actually fit enough to go through the procedure and recovery. So making sure there is nothing that would hinder a good recovery.
If you click on my name and search my previous posts, one was when my hubby was assessed for transplant and it goes through all the tests and the chats that happened during t/p assessment. My hubby was assessed and listed at Edinburgh but actually improved sufficiently to be delisted 10 months later.
Good luck. I was diagnosed with ELD very suddenly, within 10 days of beginning to feel poorly. I was admitted to hospital diagnosed with a decompensated liver, referred after 6 months of alcohol abstinence, listed after two days of tests and received a donor liver almost immediately! I was very, very lucky. I wish and hope the very best and fortune for your husband. Best wishes to you both, Martha.
Hi, I had my transplant assessment at Addenbrookes as an inpatient over the course of 3 days. Lots of blood tests, lung function test, ct scan, ultrasound, chest x ray, heart scan, talked to transplant team (coordinators, surgeon, aenethatist) endoscopy, mental health. In the 3rd day I was told I needed a transplant and was fit enough for surgery and given the consent forms to sign.Good luck
Hi Katie, that is great news about your husband being referred for a transplant assessment, in 2019 I was reffered by my local hospital and received a call about 6weeks later to attend Edinburgh for T/P assessment. I was in for 4 days and had roughly the same tests/discussions as Hilary went through, my husband was also interviewed by the team. The week was hard work, I affectionally called it Boot Camp and I was shattered by the end of each day. On last day, all the SLTU team had a meeting to discuss my results and I was offered a place on the Transplant List, with one main condition that I pledged to never drink alcohol for the rest of my life, which I agreed to and have not since. 6 weeks later I received my transplant.
One tip - remember to pack your husband's trainers and jogging pants for the lung function tests as he will be on a treadmill and peddling away on the bike (I was totally exhausted after that).
In Edinburgh, they try and have several potential candidates in on the same week which is great for support and they also encouraged you to talk to the other patients.
So glad you have made progress and you got seen by someone who knows him. I do hope that things go well for him. There are plenty of stories/experiences on this site about peoples' assessments and transplants. If you go to the related posts located to the RHS of the page, then you will see some there.
Alternatively, if you go to the top of the page and click on "Posts", you will see to the RHS "Search Posts" and then you can type in whatever you want to know and related posts will come up. Apologies if you already knew this.
Totally unacceptable behaviour from your husbands medical and care team. I would most definitely make an official compliant within the NHS framework. For the rest I wish you nothing but good luck and a happy future x
In this Covid day and age, it is more likely they will do an initial meeting with consultant, then he will invite you back in for an assessment day if he wants to move forward. I don't think they donit as an impatient anymore. Also, unless you are needed as his carer, you will be expected to leave him there while he is assessed.
My husband is 41 and is waiting on the list. It is a very daunting journey. We started out not feeling ready for it, expecting to wait a year or so. However, after 2 false alarms where potential livers have become available and a deterioration in his condition we are now desperately hoping the wait won't be too much longer. I will say, make sure that YOU have a good support network too. Its a marathon on your mental health - I'm finding it so hard to keep strong for everyone now, yet I know I've got to get through the most difficult part yet. You can't put yourself on the back burner for too long because you need the strength to get through the hospitalisation/aftercare etc. I'm also finding that unless you speak to someone that has experienced life on the waiting list, they just don't understand, so its quite isolating.
We just have to keep focusing on the positive. I keep telling myself that 2022 is going to be "our year".....new liver, new life and we're going to thrash this thing!!!
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Update on hubby Nov 2022
Liver TRansplant
Rejected for liver transplant 
Transplant assessment 
