QE BIRMINGHAM: So the journey had begun... - British Liver Trust

British Liver Trust

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QE BIRMINGHAM

Lippy42 profile image

So the journey had begun our last appointment with consultant at our local hospital was on 19th april the second time seeing her .she said she would write to liver team at Birmingham. We have just received by text his appointment at queens on the 22nd june we are sat here feeling every emotion going this is really happening my hubby's one step closer to getting better 🥰

22 Replies

That’s great news. Fantastic team at the QE. Good luck for the 22nd June.

Lippy42 profile image
Lippy42 in reply to Aotea2012

Thankyou 🥰

Lippy42 profile image
Lippy42 in reply to Aotea2012

What will happen at his first appointment?

Aotea2012 profile image
Aotea2012 in reply to Lippy42

I only know what happens by reading on this forum. So hoping that others who are better able than me can answer that.

Huggy7614 profile image
Huggy7614 in reply to Lippy42

First appointment for me was a just a consultation with a new doctor. He was basically explaining the transplant process, what the requirements are for someone to be suitable, discussing my health and symptoms, and at the end of the conversation said that I was going to be put forward to the assessment process. That surprised us, to be told that so quickly!!

It was a very informative visit, and I instantly felt I was among people who knew a lot about what they were doing. A well oiled process!!

Good luck with it, just ask if you want more details - my transplant was 3 years ago in 2 days time.

Good luck, Andy.

Lippy42 profile image
Lippy42 in reply to Huggy7614

Thankyou

Excellent news. You’ll be in good hands. I had my transplant at the QE two years ago next week, 19th May. Just take one step at a time and he will get there!

I haven’t had a transplant, just a very big resection operation, but I traveled to Birmingham for mine and can’t fault the surgeons. Definitely skilled hero’s there

Best of luck for the 22nd!

QE team are brilliant !!! My journey was a quick one, my liver started failing so my local hospital induced coma and blue lighted me to the QE, a week later I had a new liver and now I’m 9 years on in Nov. Good luck xxxxxx

Lippy42 profile image
Lippy42 in reply to Jax1971

Glad your doing well what a time you must have had back then 🥰

what great news - best of luck on your journey

Hi there,Hubby had his 1st appointment beginning of November 21, it was an outpatient appointment whereby they went through everything with him, his medical history, his relationship with alcohol, how many units he drank, how often etc. He was told that the decision would be made by the whole team after all the tests they needed to do. He also had bloods taken.

He was told that they wanted him in for assessment asap, two weeks later he was admitted as an inpatient for 5 days where they assessed him for transplant.

Obviously you need to be unwell, but well enough to undergo a transplant. It’s a major operation and not everyone will be added to the list, sadly my husband wasn’t.

They also need to be certain that the patient won’t start drinking alcohol again, so they have to commit to that for the rest of their lives.

An appointment will probably be made at the outpatients cirrhosis clinic, my husband had an appointment for feb this year, however we cancelled it, no point in attending when they declined the transplant with no chance of ever been listed, and he has been 2 years alcohol free now.

Good luck Let us know how you get on x

Lippy42 profile image
Lippy42 in reply to Lils2019

Thankyou for replying I will update you as I know more .Did you go with him to the first appointment my hubby doesnt take everything in so hoping to go with him x

Lils2019 profile image
Lils2019 in reply to Lippy42

Yes I did go in with my husband, he doesn’t remember stuff, doesn’t tell them what they need to know, I went with a notepad, and a list of questions.A list of all his current medications, what complications he was having, the portal hypertension, varices, HE, chronic fatigue etc.

It’s important that they know the full picture and have the information.

I found the outpatient appointment good, I found the inpatient assessment hard going, obviously I couldn’t stay with him and he was reporting back to me over FaceTime. On admission they told him to arrive at 6pm and it was well over 10pm when he was finally admitted, waiting on Covid test results, they knew we had travelled nearly 2 hours, he wasn’t offered a drink or anything to eat, I went to the shop and brought drink and sandwiches. I had an absolute nightmare getting back on to the ward, I was stood outside for at least an hour, staff could see me waiting but just carried on and ignored me. They didn’t give him his evening medication until 2 am, as it wasn’t on their system.

I spoke with the sister/nurse in charge and I expressed my concerns when I went in for the information afternoon about transplant.

Husband is disabled, had a cateract op the week before admission, and had limited sight, was waiting on the other eye to be done. He had very little in the way of help, he asked a nurse for clean support stockings and he had to ask repeatedly, two days before they were changed, he asked them to help him get stuff out of his bag and they didn’t. He was fussy about his food due to a bleed and they got his meals mixed up, then told him they had no more food so it was either eat it or go hungry.

The day I went in for the afternoon, I expressed my concerns that he has HE, memory is very poor and it should have been staff that contacted to make me aware that I needed to go in, and I was given a days notice to arrange cover at work. He was due an endoscopy at 9 am that morning, when I arrived they wanted to cancel the information afternoon due to that. He had nothing to eat or drink since midnight the night before, and his blood sugars were down to 4, I told the nurse that this was simply unacceptable. He went down 5 mins after I arrived.

He had lots of other stuff happen too, and to top it off, there were two Covid wards next door.

They didn’t wait for me to arrive, to tell him he had been declined for transplant and they never told him why, it was in the discharge notes.

I found the whole experience very stressful and awful.

Lippy42 profile image
Lippy42 in reply to Lils2019

What an awful time to go through I hope they have improved since then it sounds like a nightmare. Hope your husband is ok as can be my thoughts are with you ..cirrhosis is a horrible disease to live with 😪 I cant believe the ups and downs my hubby goes through like yours to I imagine 🥰 take care

Alibaba80 profile image
Alibaba80 in reply to Lils2019

Hi Lils was your experience at the QE by any chance?

Lils2019 profile image
Lils2019 in reply to Alibaba80

Yes it was, I know Covid was a problem but even so, no excuse for poor care.Everyone I had spoke to said oh it’s a great team etc etc, our experience was somewhat different, it was awful.

Alibaba80 profile image
Alibaba80 in reply to Lils2019

My experience was very bad I'm afraid ( and still is). I've been in inpatient many times aswell with cancer and its like being in prison. To be fair they were good with my cancer but for my liver issue, they are absolutely useless ( and I live on their doorstep). Unfortunately it's not straightforward and easy for everyone to get a liver transplantation even when desperate, so in my experience, they are far from brilliant.

Lippy42 profile image
Lippy42 in reply to Alibaba80

This doesnt sound promising I'm anxious for my hubby now 😪

Lils2019 profile image
Lils2019 in reply to Alibaba80

I’m sorry that your experience wasn’t great either, I used to dread the FaceTime calls from my husband, he was so distressed the whole time he was in there, every night he told me he wanted to come home. The communication between staff was non existent also, they took him for a scan and hadn’t given him anything to drink before hand so he had to sit in the waiting area for 2 hours in a wheel chair. Honestly it was issue after issue.Awful, awful experience.

Alibaba80 profile image
Alibaba80 in reply to Lils2019

I agree Lils. I was left to rot in the bed I had to complain to pals many times. Everybody is different of course so I'm sure not everyone will agree but I've had to fight and fight to get help and I live 2 minutes away in the car. Ive been to a&e many times for my cancer and liver. I am a 41 year old female and unfortunately most of my experience at the QE has been very very bad. To be fair they dealt with my cancer operation relatively swiftly but the liver issue is a nightmare😔

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