Here I am again...: As most of you know... - British Liver Trust

British Liver Trust

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Here I am again...

pear-shaped profile image
pear-shaped

As most of you know, my husband had his liver transplant Christmas Eve 2014. Things were looking great until a few weeks ago - he started getting severe itching all over... I took him into A and E and he was seen by the Liver Reg. An US scan showed no blockage in the blood flow to and from the liver. They did a biopsy yesterday and the results will be with us on Monday. His bloods are a little raised and they are worried that he may either have an infection or more likely his Hep C is back with a vengeance and attacking his liver.

I am so frightened that if it is the Hep C then what will happen...

Pear.

16 Replies

So sorry to hear this pear. No answers for you but you have the support of everyone on this site. We are thinking of you & hoping this us just a blip that can be resolved by the wonderful transplant team members. Hang on in there, don't worry something that may not happen. I know it feels like a long wait till the results but try & keep positive. Keep calm, one day at a time. All our love B&L

Thank you, they are a wonderful team - I just hope they can find a way round this... As he is in hospital they are keeping him under close obs.

Thank you

Pear

I was and still am in the same boat unfortunately. My transplant was Aug 2013 and the Hep C came back in the new liver by the Nov. I was also showing signs of rejecting but they were not sure what to treat first, the hep C or rejection. They plumped for rejection and put up my prednisalone. This seems to have worked and recently my pred has been lowered a little. Unfortunately the higher pred dose has made me diabetic but this is under control and hopefully this might go when the pred is stopped fingers crossed. However my hep C is now getting worse and a recent fibroscan was not looking good. I have had my case put forward to start the new Sofosbuvir treatment but if this is declined it could be August until I can get this or later. Thr thing is the I am keeping positive through this and your husband has to do the same. Keep fighting and keep in touch with the hospitals. Keep phoning until you get the answers you want. Oh the itching will go after a while It was terrible for me but it did go. Good luck with everything x

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pear-shaped in reply to dizzime

That sounds terrible... I have been reading some papers which seem to give the most dire picture... I do hope you get the treatment as soon as possible... I will be meeting with the Hep C nurse tomorrow and hope she can help us make sense of it all...

Thank you so much...

Pear

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Hidden

Hello Pear xxxxx So sorry to hear that following transplant hasn't been great 😓😓😓😓 My Rob is 10 months post-transplant and at 6 weeks after is viral load was 5 logs or million - and since having USS he was told he has ' fatty liver' and raised LFTs probably due to HCV attacking liver 😢😢😢😢 he has Geno 3 and has been told that they won't even consider any treatment with interferon again as he was so poorly last time !!!! He has some of his old symptoms back 'abdo pain - nausea - itching - constipation - fatigue' and he still has 'hole' above his belly button (wound that hasn't healed' - we have asked about hep c treatment and were told that there is little or no funding and they are treating those with cirrhosis and HCV first ???? Which doesn't make sense to me at all !!!!! Why put someone through all the trauma of a liver transplant and then let them get really poorly again before treating them ???? Have they mentioned anything about CMV ??? Hubby had urgent bloods etc Friday and they wanted him admitted but he refused (he says he is totally fed up with hospitals and drs and has given up) - they were looking at him having CMV - something that people get after a liver transplant ???? I wish you both well xxxxxxxx we thought Rob would get transplant and everything would be wonderful again 😓😓😓😓😓 and still we are battling xxxxxxxx keep you chin up xx

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pear-shaped in reply to Hidden

Oh my gosh! He must go in if he has CMV! It is a virus which attacks the liver and other organs - 30 years ago it was the biggest killer post transplant. My husband had this and they treated it with Valganciver (apologies for spelling mistakes!) he has cleared it now...

You are absolutely right - if they have given a transplant which is so costly to the NHS surely they would prescribe this drug to clear HCV??? You hubby is right to feel so fed up - but do not let him lose focus - CMV is lethal and he could clear it easily with this drug.

Post transplant - I felt as though we had been given a new lease of life - now feel so lost again...

I am just hoping that tomorrows news is something he could be treated for...

You must convince him to go in to get treated. Also if the hospital are saying he can't have the HCV drug - it maybe available through other means - do explore other hospitals...

I will pray for us all.

Pear.

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Hidden in reply to pear-shaped

Thank you pear xxxx unfortunately after 3-4 years of illness and 'extreme enceph' I am now a wreck !!! On anti-depressants - diazepam 😢😢😢😢 (I used to be a RN) - I have now formed the opinion of 'he is of sound mind and I can't keep on nagging and fighting someone to help themselves when they don't want to' - it may sound harsh - but I don't have any strength left 😣😣 I am far too cross !!! This was all caused by negligence of GP so Rob thinks the world owes him a massive favour and I can't keep on saying the same things all the time - I am sure if or when he feels ill enough he will go to hospital - but for now he is on his own 😥😥😥😥😥 xxxxxx really hope your hubby can get treatment xxx at Kings they have said 'not for a while' !!!! Xxx

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pear-shaped in reply to Hidden

It is such a vicious circle...

Why is it that alongside such a huge operation there is no support network for the main carer? I feel angry that you have been left to it and given anti depressants instead of real support. I am furious that you have been brought to this... I always answer emails so please email me if you need to let go a bit...

it maybe worth the liver trust taking the availability of the meds to post transplant patients...

Lots of hugs and love,

Pear

Sorry to hear this Pear. Did you have discussions with the transplant team prior to the TP as to what the plan was for your husbands HCV? Presume they want him ideally to wait a while for the post transplant issues to settle before introducing a course of treatment for the HCV.

Hello,

They weren't expecting it to come back so soon... He did have the sofosbir treatment in October 2014 - which did not clear the virus but was followed by the appearance of tumours which had been embolised.

The Coordinator has said it could be: medication effects, Hep C, bile leaking somehow or an infection in the liver. We get the biopsy results tomorrow - so hopefully it will be something treatable.

Pear

My love and best wishes to you Pear Shaped and Robswife, so very, very sorry that things are working out this way. I know how much store and hope we all put in that transplant to give us our loved ones back and it is heart breaking to hear that at the moment things are not going to plan for you all. Like you I can't believe they go to all the trauma of transplant to then allow the new liver to be attacked by the very illness which caused the demise of their original livers they don't allow alcohol users to drink post transplant yet they are letting HCV attack again - stupid!!.

I hope that you both get some better news soon, hugs to you both.

Look after yourselves too ladies, a friend of mine who cares for his wife who has horrendous back pain and other illnesses often says to me "who cares for the carers?" and it's right enough.

Loads of love to you all, from Katie :) xx

Hi, Two years after my TX I have the itch back , I have blocked ducts again but hopefully it will get sorted..

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pear-shaped in reply to Brummi

That sounds awful. Have they given you any idea on what they will do?

I hope that they try to sort you out as soon as possible.

Pear

I would have thought if your husband cleared his HCV after treatment..the virus did not return after 6 months, then he had his transplant that his HCV could not return unless he was exposed to HCV from another source since the transplant? I sure the tests will help reveal reason.

I think the doctors do all they can to try and keep people that have had liver transplants healthy.....they might try a longer course of treatment to cure the hep c as soon as your husband is fit enough ...hope he gets the virus sorted Pear..it is hard enough going through a transplant with all the stress it causes along the way never mind having to cope with this on top...good luck pear i hope they try and treat him again after he is fit enough X

Sorry to hear this pear. As you will know the HCV never went away, as the treatment your hubby underwent didnt clear the virus, it may have reduced the viral load for a while, but until someone is undetectable for at least 6 months post treatment (as art says) they are not considered cured of Hep C. They probably hoped it would not start attacking the new liver quite so soon, but HCV is a nasty and unpredictable dragon of a virus. Unfortunately as I'm sure you know the HCV virus isnt just in the liver, its in the blood and therefore everywhere in the body blood goes, the HCV virus goes too. A transplant will give the patient an HCV free liver, but not HCV free blood. I have known patients with active HCV to be given a transplant and then undergo a successful course of treatment post transplant to clear the HCV virus, it is possible. It does sound strange that someone is given a new liver when they have an active virus, but if the patient has cancer, as Pear-shaped hubby did then the transplant is to give the patient time to get stronger and then undergo a post transplant course of HCV treatment. With cancer your hubby would have been excluded from having a second go at treating his HCV so transplant was his only survival option.

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