Urgent advice needed

Hi Pals, I was diagnosed with Hepatitis B 11years ago, just 6 months back I have been having really bad abdominal pains, constipations, abdominal rumbling, right upper abdominal pain. My doctor just prescribed Lansoprazole for me but I am afraid to take the drug. I am only 28 and afraid, I don't really have the financial backing to undergo a transplant although the hepatologist thinks that is the only way out. As it is, I am just patiently waiting through time. Any advice for me, I would be glad to see the next 24months

[AyrshireK]

Is your Hep B being treated with anti virals? You don't mention whether you've had treatment for it.

Why are you reluctant to take the PPI (lansoprazole)? It might end up controlling the stomach issues you are having - my hubby has been on a similar medication (omeprazole) for 8 years without issue and it has certainly help the issues he was having with his stomach.

What country are you in when you talk about financial backing to undergo transplant?

If you provide a bit more information we might be able to provide information that might help i.e. if you are in UK we can advise on benefits you might be entitled to etc.

Katie

[Hidden in reply to AyrshireK]

Unfortunately, my Hep B has never been treated, The hepatologist did not consider treatment as they thought my viral titre was low, but the last viral load checked in December was scary 92,456,563. I have been referred to another specialist since I moved from Scotland to London 6months ago, and due to the covid my appointments has been scheduled in December, I am really worried as each day seem to get worse

[AyrshireK in reply to Hidden]

Did you have any scans after your viral load returned that high. You'd have thought they would have introduced treatment when your tests came back so bad.

The whole covid thing has put so many people behind but you are seriously playing catch up now.

Transplant wouldn't make the Hep B go away and even with a new liver they'd have to treat that or else it would just start attacking the new one.

Sounds like your case hasn't been very well handled even before the covid situation.

London is obviously a pretty expensive place to stay, though in the UK you would probably qualify for benefits if you were too ill to work as inevitably you would be at the time of transplant and post op.

Obviously you are in pretty desperate need of a face to face medical appointment and lots of tests to assess the current state of your liver. If you are showing serious symptoms I wonder if your GP would be able to try and expedite your face to face with the London doctor.

Best wishes,

Katie

[Hidden in reply to AyrshireK]

That is the problem, my GP will be the one to kill me before my time, anytime I call the surgery to see if they could even organize a fibro scan and let me do another viral level check they keep telling me my LFT'S which were done in August looks OK, but when I visited A&E in July they said my bilirubin level was high. Now I feel very itchy around my right upper abdomen and feels a stabbing pain for the past two months. I would try and see if I could fix something better than a phone call appointment. I am really desperate and don't know what to do

[AyrshireK in reply to Hidden]

If your GP is so rubbish, have you got the name of the specialist at hospital? I would be writing to them personally (i've done it myself when hubbies appointments for scans, referral to transplant unit etc. were not done timeously). Include in your letter all the details of your current symptoms etc. See if you can't perhaps expedite the appointment yourself then.

Katie

[Hidden in reply to AyrshireK]

Hello,

I would really be grateful if you could help me whiles i still try to work out things. The specialist I have been referred to Is Dr. Millar at the North Middlesex University Hospital. I could send you scanned copies of all the letters from the previous specialist who was considering treatment prior to move down to London. I would only need your email address to furnish you with the documents. A doctor at A&E looked at my viral load and told me that really doesn't much my appearance, obviously i look good from outside but i feel something eating me up from within. No one seem to understand what i am going through and i am suffering. Now i feel fatigue and can only manage to finish shifts at work, i feel i may stop working very soon if this feeling continues.

[AyrshireK in reply to Hidden]

Me having sight of your documents wouldn't help. Perhaps you should make copies of everything you have and send to this new doctor and request some sort of urgent appointment. I don't know whether they'll bring your appointment forward or make it a face to face or not. It's a great pity your move preceded a course of treatment commencing.

[Hidden in reply to AyrshireK]

Thank you very much for your support, I would try to find a way of getting to see the specialist ASAP no matter what it takes. I appreciate your advice.

[Longan]

Sorry for my Poor English , My husband has decompensated Cirrhosis From Hepatitis B and Alcohol , he treatment with Antiviral medications to virus under control and stop it damaging his liver more . Now his HBV viral Load good and he getting better from year ago . Wish he can wait till liver transplant 😔 .

[Hidden]

Good morning LexisMar,

I can see our forum members have been supporting you.

I have attached the British Liver Trust information regarding Hepatitis B.

britishlivertrust.org.uk/in...

I have also attached the National Institute of Clinical Excellence (NICE) guidance for the management of Hepatitis B.

nice.org.uk/guidance/cg165

If you feel you are not being treated as you should, you can take you case to Patient Advice and Liaison Service (PALS) who can help to address your case.

nhs.uk/common-health-questi...

I hope this helps,

Trust9

[Hidden in reply to Hidden]

thank you very much for the support