No way hosea

[Vespa27]

Hi I received a letter today from my consultant. My ALT has been going wonky for a few months now. Initially he discussed speaking to head of hepatology to change medication however, the letter I have today is asking me to go have another liver biopsy done ..... I have had pne fone in tne first instance 8 years ago, which is how I got my diagnosis, AIH PBC overlap....now tjis eS necessary for diagnosis but in my opinion not necessary at all to check on progress. My first one was so painful I felt everything because tje local anaesthetic did not work on me and I told him to stop the procedure on several occasions but he did not, he thought I was joking...I had to tolerate this procedure and suffer...I am not going to have this done again, not when there are other less invasive options out there. Any advice on the nearest fibroscan to me would be welcome, I live in Wakefield district west Yorkshire. Thanks.

[LAJ123]

Hi Vespa27,

I suppose this isn't going to be much of a surprise when I tell you there isn't anything to fear but fear itself. What happened was unfortunate but certainly no reason to believe that all such procedures are going to be so bad with a different doctor.

I had a really bad experience with a dentist aged five and it took 35 yrs to get the courage to go again. Once there, it was awful but gradually it became tolerable, I then realised I had wasted 35 yrs of keeping my teeth in good order.

I've now had two liver biopsies, one before transplant and another afterwards. I can honestly say that both were absolutely fine. The first time I was too ill to be bothered about anything but the experience was quick and simple. I had adequate sedation so I was comfortable and sleepy with little memory of what happened. That was a biopsy via the skin into my side, the second was via the jugular vein. This was also painless due to adequate sedation and local anaesthetic.

As long as you make it clear to the person taking the biopsy that you are very anxious due to a bad experience, they can take steps to make it as comfortable, pain and trauma free as possible.

As I understand it, a Fibroscan can give an indication of the condition of the liver but a biopsy is the definitive way to get a proper diagnosis. So you are best advised to speak to those concerned with your treatment and come up with a plan to have the biopsy.

Take care,

Jim

[Vespa27 in reply to LAJ123]

I have a diagnosis hun...I don't need or want another horrific experience to say yes you still have AIH PBC overlap...the anaesthesia did not work so unless they put me out completely, its not happening. At the time of my last biopsy, I did not know that I had hypermobility syndrome, according to the rheumatologist, this is why things like dentists anaesthesia does not work very well or other forms of local anaesthesia may not work well....believe me its been like this all my life, so not very pleased. It is normal practice at Pinderfields hospital to keep you awake through the procedure, it's not pleasant believe me. I am going to try and see my consultant today to discuss this with him in person, I dont have an appointment but I am not leaving until he has a chat with me about this matter. Thanks hun xxx

[Porphyriamaniac in reply to Vespa27]

Hi Vespa, I'm treated at pinderfields and they have elastography machines which do the same thing as the fibroscan machine. Mine was performed by a consultant radiologist there, requested by my pinders based hepatologist, so it's definitely an option. My condition is different to yours mind. They must think biopsy is necessary for some reason? Have him explain the reason and decide from there maybe? Hope you get to see him today and it goes ok. Xxx

[Vespa27 in reply to Porphyriamaniac]

Hi hun..I rang his secretary to let him know I will be turning up at clinic toady and have been told that he's on the wards today, so no point in going. She was nice though. I have the overlap but my medication which is mercaptopurin and urso is not controlling the AIH part of my condition any more, plus I had a nasty flare in November last year. He wants me to have an urgent biopsy...but, its a case of medication and nothing else....it either needs upping or changing....this is what we discussed at my last appointment that he would speak to the hepatologist about my case and a change in medication get back to me....he said notbing about he possibility of a biopsy....now, if he had checked my file first, he will have seen written in red bold type, no further biopsy intervention due to irregular reaction to anaesthetic used. I know I am not well and I think what I need to do is retire from my job or at least semi retire and rest up to try and get well. My meds need changing and to be fair, they have never agreed with me. I refuse prednisolone due to severe moonface within 48 hours of taking it plus other nasty side effects...I am just so fed up with it all now...I have had enough...8 years on toxic chemo based mercaptopurin plus everything else that is going on....I am at the point where I want to stop all treatment...thats how feel at the moment hun.

[LAJ123 in reply to Vespa27]

Hello again,

Everything you have said suggests that you might benefit from talking to someone in person.

The British Liver Trust have a telephone help-line where you can talk to an experienced and qualified nurse.

The line is open daily from 10am - 2.45pm, Monday to Friday ( Not bank holidays ) 0800 652 7330. You can email as well to [e-mail]

Wishing you well.

Jim

britishlivertrust.org.uk/fi...

[Vespa27 in reply to LAJ123]

Thank you, I have just emailed them .

[Porphyriamaniac in reply to Vespa27]

I'm sorry to hear that love, I can understand you being fed up. Is there anybody at Leeds or further that you could get a referral to that specialises in the overlap? If your not happy with the treatment and care maybe get a second opinion? Xxx