Liver transplant aborted: I was... - British Liver Trust

British Liver Trust

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Liver transplant aborted

Shep666 profile image
7 Replies

I was diagnosed in early April 22 as needing a liver transplant. The outward signs were yellow eyes and skin, lot’s of weight loss, fluid on the legs from ankles to mid thighs, very extended abdomen with small veins extending out on top of the abdomen. My lower legs were red, itchy and “scaly” I was admitted to hospital and had 15 litres of fluid drained from my abdomen and put on a series of medication that involved water tablets, vitamin supplements, anti-biotics and protein supplements. After an exhausting week of tests I was deemed a suitable candidate for a transplant and placed on the transplant list. I had spent the best part of six weeks in hospital in mainly two visits. During which time they were able to assess my condition and “tweak” with my medication so it would be possible to go home whilst waiting for the transplant.

I was called for my first transplant the next day at 4am, It was a DCD liver. On arrival at the hospital I was tested (blood, chest xray, ecg) and told I would have to wait to see how things developed. A couple of hours later my transplant coordinator visited and said the transplant had been cancelled as there were no critical beds available. Total visit time 5 hours, I went home and was not down as I had been on the list less than 24 hours. I was thinking how hard can this transplant be?

2nd call was a couple of weeks later at 5am same procedure as before. Again a DCD liver. After 7 hours I was told the liver had degenerated too much to use. Again I left not too despondent but the slow realisation that a transplant was not straight forward.

3nd call was a couple of weeks later at 2am same procedure as before except I met the surgeon and the anaesthetist. Again a DCD liver. After 11 hours I was told the liver had been inspected by my surgeon and he deemed it too fatty to use. As the time involved had increased and meeting the surgeon and anaesthetist I had convinced my self it may happen. I was down, tired, hungry and despondent. It was starting to play on my mind and I could stop thinking about it.

4th call 10am saying not to come in but be prepared as they had another DCD and were working on it. Have a meal then go nil by mouth. 2pm got the call to make my way into hospital. Same as before. As time ticked by I got further and further into the process until they said all I was waiting for was to change into my robe. I now was experiencing feelings I hadn’t had before. For the first time all those risk figures in my liver “bible” became palpably real. I was facing the actual operation and playing through the outcomes. The night staff came and said theatre had called and said they were ready, prep me for 10 minutes time. 5 minutes later my coordinator appeared and said it was all cancelled – the surgeon had deemed the liver too fatty again. I felt like I had been punched in the stomach, I was in shock and disbelief! We shuffled out of the hospital saying all the right things to staff that had been helping me. It was a very quiet journey home. I have since felt deflated, lethargic and mentally very drained.

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Shep666
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Shep666 profile image
Shep666

I would be interested in other peoples experiences

BritishLiverTrust3 profile image
BritishLiverTrust3AdministratorBritish Liver Trust

Dear Shep666,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

Our next pre & post liver transplant support group is running next Thursday 26th of Jan at 7pm on zoom.

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

Ewife profile image
Ewife

You poor things. We have been through very similar experiences - 3 x cancelled so far. Thankfully my husbands results have been stable enough for us to enjoy a break from the list (suspended, not off) and I definately recommend you ask for this too if possible. Even if its just a weekend away. You don't realise until you come off what a strain it is. First thing I did was go and buy some sleeping tablets- I just wanted to sleep like there was no tomorrow!! They have told us we need to start thinking about going back on in Feb and we definately feel more ready again.

Wishing you all the best,

Ewife

Maison2023 profile image
Maison2023

oh my gosh ,that is such an awful thing to go through ,4 times !

My Husband was listed in 2009 and had his first offer go ahead smoothly after a 3 week wait on the list . His PSC has returned and we are currently waiting since August and the tension is beginning to rise in us both .

sounds like you are being well looked after and that they are waiting for the perfect match but must have been very hard for you :(

We are under Addenbrookes and I have every faith in them , so whatever they do ,we know its for the best

good luck x

Yellowsydney profile image
Yellowsydney

Your time will come, better to wait for the perfect liver then have one that will not last. I was lucky I got my transplant first call after 8 months on the list, but they did tell me two weeks later and I would have been inoperable, my 'new' liver was moderately fatty but better then mine, 5 1/2 years later it's doing fine. Many people wait years for their first call.If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, for support and advice.

Hilary

Braveheart65 profile image
Braveheart65

it must feel like a form of torture. So very sorry you’ve had these experiences.

When I was placed on the TX list I had read so many people like yourself who had had repeated “false alarms” all the way, some to the point of being on the table, getting prepped and then it cancelled.

So when the call came for me 11 nights after being put on the list, I was fully expecting to be sent home. It was during covid so my husband wasn’t allowed into the hospital and dropped me off in the car park. I waited from 11pm till 4pm, then walked myself into the theatre. Met the anaesthetic who told me he wouldn’t leave my side until I had woken up again but that I might wake up still not having had the transplant as the liver was being heated up at that point.

I’m not sure when I woke up again but I was in ICU and the op had gone ahead. I then saw my husband 13 days later for the first time in same car park (COVID no visiting) as I was going home.

Everybody’s got a different experience to recount. I just hope your time comes swiftly, peacefully and successfully.

Stay strong in mind & body.

Alicia

Shep666 profile image
Shep666 in reply to Braveheart65

Thank you all for sharing your stories and support.

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