Trying to keep the chin up!

[Ewife]

Evening! My Husband had his first face to face consultation with the transplant team since he was listed today. Looking back it was very intense, despite the friendly faces of the Team. Came away feeling less certain about what our future will look like than when we went in....the real bummer about Liver disease is that even the specialists can't predict anything.

He is lucky enough to have seen progress in some areas - some of his blood results have improved and his muscle mass/strength has improved massively thanks to hard work and diligence ( mainly him, a fraction me😇). However some areas he has deteriorated - mainly the fluid building up again, and a problematic clot in portal vein. This clot is threatening to derail the whole transplant if it has increased. Anxious wait for a week or so to get scan results on this.

I feel like I've been hit with a torrent of different emotions ...even anger (no idea where that came from but it was quite a strong one for a while!🙄) I feel as though my brain is a bit numb and can hardly process all the different emotions right now.

The wierd thing is, if the first donor he got called in for wasn't so fatty, he would all have been done and dusted by now and a few months into recovery. We've had 2 false starts so far - now this. No wonder I don't know how to feel.

Everyone out there with mild, warning liver complaints - take heed - don't put yourself or loved ones through this. Look after your body and respect it🤗

Xx

Ewife

[Hidden]

Hi

Been there and done it (I had a transplant 3 years ago)

None of the stages of Liver disease are good, but this stage you are at now is mentally really hard

I had to wait until they recon I had about 6 weeks left

In hind sight I now know the team really know what they are doing, and when the right time comes they make it happen. They will be keeping a close eye.

I got my life back. Keep the faith and I pray it happens soon for you to

David

[Ewife in reply to Hidden]

Thank you for your encouraging reply. I think it has shown in the areas that he has worked hard such as increasing his muscle mass - but my gut feeling is that he still isn't actually as well as he was a few months back. I do trust the team he is under though, its just really difficult mentally, like you say. When he was first assessed, they said that because he is so young, they wanted to be able to take time to find him a really good liver, not become an emergency job where they have to put something second best in. So I guess that's where we're at.....

[Hidden in reply to Ewife]

That's what happened to me, I got as they called it a Porsche of a liver.

It worth the wait the recovery is much faster

David

[Yellowsydney]

Hi, don't panic, I had a clot in my portal vein had to inject blood thinners every day whilst on the transplant list had a CT scan a month before transplant and my portal vein was completely blocked I believe this pushed me up the list. On the day of my transplant I had to have a ct scan and wait for the surgeon to decide if was prepared to operate he took the risk but said that two weeks later he would have said no. My 'new' liver was moderately fatty but better then mine, I had my transplant due to NASH cirrhosis at Addenbrookes.Good luck

Hilary

[Ewife in reply to Yellowsydney]

Thank you for replying. He has been on Warferin for a while now, so really hoping that the clot has not increased.