Update on transplant

[Ewife]

So we had the follow up appointment this week with the transplant team. My husband has been on Rifaxomin since our last appointment 6 weeks ago, which he has responded really well to - thus confirms the diagnosis of mild HE. Happily, he hasnt had typical symtoms, just incredible fatigue, sleepiness and slowness, more headaches etc so it crept up slowly on us and got missed for a while. His bilirubin is now averaging at a higher level than when he was first listed, resulting in the HE and more jaundice than previously seen. All this said, they are still feeling that he should remain on the transplant list but inactive and review again in 3 months. Im not really sure why theyve had this change in plans, as his UKELD score is still quite a lot above the threshold. I got the impression that he probably will still have a transplant at some point, but his condition is better managed, and less risky this way for the time being. I also wonder if there might be Welfare reasons - he had been on the list such a long time - it does really drain and intefere with your way of life after a bit.

So, thats that. I have a 3 month block whereby life will be slightly more predictable and certain - I intend to make the most of it!

Anyone out there following our story will be able to prepare themselves for the long and unpredictable journey that transplant and liver disease can be!

Take care everyone

Ewife

[AyrshireK]

It sounds like transplant isn't immediatly required but perhaps they do think you need a bit of a break from the stress of being constantly on call. Enjoy the break and make the most of it before he's reactivated. Obviously if you feel he's sickening again before that next review, get him seen. Don't let him get too bad.

Katie

[Ewife in reply to AyrshireK]

thank you for your kind reply...yes, i will definitely shout a lot louder next time if i see a decline. Looking back, i feel quite alarmed at how much he had declined, but it was so subtle and slow - i think i was the only one seeing for a long time.

I intend to make the most of these next few months, concentrate on myself for a bit and get a few things in order which have been neglected due to his health. Im learning to live with the illness, rather than everything on hold, waiting for transplant.

Xx

[Millie09]

hi ewife,

How are you ?..

So as for the update on hubby , it seems as Katie stated ,they are keeping a close eye on things, its good that hes on inactive transplant list , thats better than not being able to go on any further .

Some positive results ewife ,and diagnosis of HE..

Take time out now ,

Best wishes linda x

[Ewife in reply to Millie09]

thank you - its definitely some Me Time thats top of the agenda for a bit.

Xx