Liver transplantees please!

[L4LSarah]

Hello!

Hi everyone……could I ask for your assistance please? We have been approached by Astellas to reach out to people who have had a liver transplant, to share their story. This would coincide with data that is being published by the European Liver Transplant Register. The data is likely to be about how a 'ONCE a day' pill is the same, or slightly better, than taking an immuno-suppressant TWICE a day.

At this stage, we are just collating details of people who are interested and willing to share their story with the media.

Therefore, I’d be very grateful if you could email me with brief details of your story, and also if you could let me know:

1. the name of the anti-rejection medicine you are on

2. your age

3. what life is like now, post-transplant

4. how receiving a new liver has affected your life

5. medications that you still need to take

6. the impact it has had on your friends and family

7. your location in the UK

8. your availability during the second week in February.

As you may already be aware, Astellas are the leading manufacturers of liver transplantation anti-rejection treatment. Their medicine is tacrolimus, which is also known as either ‘Prograf ’or ‘Advagraf’ - Prograf is taken twice a day, and Advagraf is taken only once a day. They will be conducting the media outreach around the new data.

I will look forward to hearing from you, and whether you would like to help us with this.

Please email me at: [e-mail]

Many thanks as always,

Sarah

Helpline Manager

Liver4Life

Liver4Life.org.uk

[lola800]

I live in US, but am willing to help if I can. Had Tx in 2011, am on 6 mgs tacrolimus/day.

[L4LSarah in reply to lola800]

Dear Lolo800,

Thanks so much for your kind offer. We really appreciate you getting in touch with us.

However, the survey has closed now, and so, at the moment they aren't looking for any more feedback etc.

If there is anything that I can help you with, then please don't hesitate in contacting me.

All good wishes and kind regards,

Sarah

Helpline Manager

Liver4Life

[lola800 in reply to L4LSarah]

I'd be glad to help at any time if needed. I'd like to know where I could get an assessment of my current liver status. Two years after liver Tx in 2011, liver function tests were bad with ALT/AST of 400/500, GGT of 650, ALP 200+. New liver is cirrhotic, MD's have said. After claiming I was a "medical enigma", I was diagnosed with de novo Autoimmune Hepatitis, and w/in past week have been tested, based on MD's suspicion, re recurrence of Hep B. The lab results said all HBV antigen/antibody tests were negative, however, Hep B diagnosis was added to medical chart dating back to first onset of complications in 2013. My GGT is now 1018, ALT/AST 114/192, ALP is 215 and I'm not sure what to think as they first told me they had to re-transplant me, but later retracted that offer. I do not drink/drugs at all. By the way, I was transplanted at ESLD stage as a result of Chronic Hep B, hepatopulmonary syndrome and 4 hepatoencephalitic comas and TIPS shunt following major GI bleed. I signed a waiver pre-tx which allowed a graft organ with exposure to Hep B, but not active infection in order to widen the donor pool for me. Some edema and ascites, constant pain in upper right quadrant and severe, persistent nausea. Anyone you know who could offer info/opinion would be appreciated. Thank you so much, and again, if there's anything I can ever do to help, please let me know.

[L4LSarah in reply to lola800]

Hi Lolo800,

Many thanks for your further contact, and your very kind offer.

I can quite understand that you're feeling a tad frustrated right now and that you need some straight answers from the health professionals.

I would persist with your consultant and also get in touch with the transplant co-ordinator (team), especially if you've not spoken to them recently. They should continue to give you advice - post transplant.

Please keep us updated!

All good wishes and kind regards,

Sarah

Helpline Manager

Liver4Life