Transplanted liver now in trouble?

[Kimlescam]

Hi All

My husband had a liver transplant in 2017 and has been mostly well since. He had NASH cirrhosis and liver cancer.

He had a set of bloods on Monday unrelated to his liver but his liver function was tested. We were called the next day as ther were some surprising results which have worried him.

All of his levels were fine in February 2024 but now Alkaline Phosphate and his Gamma-glutamyl Transferase are high?

What might this indicate and is it something we should be worried about?

Many Thanks

Kim

[carmik]

Do u not go regularly to post transplant clinic?.My hubby nearly 13 years post transplant ,still seen every 6 months in clinic.only way he can get his immunosuppressants as gps cannot supply them.

Carole

[Kimlescam in reply to carmik]

Hi Carole - thanks for replying we have been seen every 6 months in clinic and last went in February 2024 but have not received a further appointment. We normaly get one the same day but not this time and we have not heard from them since. All of his levels were normal at the end of February 2024.

[carmik in reply to Kimlescam]

Hope I am not saying this too soon but we always come away with next appointment

[Kimlescam]

Yes we have always done in the past just not this time, but I have emailed them so hopefully he can be seen reasonably quickly - thanks

[carmik in reply to Kimlescam]

Good luck

[h0b0]

My partner had transplant in 2016. Since covid he only gets yearly telephone appointments from St James Leeds.

[Kimlescam in reply to h0b0]

Does he also get regular blood tests?

Many thanks for your reply

[h0b0 in reply to Kimlescam]

At gp yes. Not tacrilimus though.

[ThreeSmiles in reply to h0b0]

So when are Tacrolimus levels checked?

[h0b0 in reply to ThreeSmiles]

Hospital asks for them yearly.

[ThreeSmiles in reply to h0b0]

That’s a long interval -well at least compared with here in Derbyshire. I have two blood tests between Liver Clinics at the Royal Derby in readiness for the six monthly clinics there with a Hepatlogist. I’m just coming up to six years post TP. Odd how we are all different!

[carmik in reply to h0b0]

Sorry but that is bad.bloods need checking regularly when on immunos

[Yellowsydney]

Hi, I would phone coordinators, explain what's happening, they will probably want to see him in clinic and do their own bloods. Don't usually test my GGT but only time they did it was of the scale nobody commented. Had my transplant may 2017 at Addenbrookes for NASH cirrhosis, still on 3 monthly appointments as I've had issues not liver related. I had appointment on Thursday sent next appointment whilst still at Addenbrookes.

If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, thousands of people that have been in your situation.

Hilary xx

[Kimlescam in reply to Yellowsydney]

Thank you and I will do xx