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Autoimmune Hepatitis

Liver Biopsy??

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#1 judyt

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Posted 12 September 2012 - 04:07 PM

Hi Everybody,
I wrote a post yesterday following on a thread which was talking about Specialist visits but I think I had better give this topic its own heading because I would really like to hear from anybody else who has Cirrhosis of the Liver,

I have had deranged liver function tests for any years and now I have been told that I have Portal Hypertension and cirrhosis. From what I understand the cirrhosis is as a consequence of long term disease and the Portal Hypertension comes about when the portal vein starts to have trouble functioning properly because of the stiffening effect of the cirrhosis,

After a myriad of tests the Liver Specialist I consulted has ruled out most things and thinks I probably have Autoimmune Hepatitis and the way to confirm it is a Liver Biopsy. My dilemma is that I have been told in the past never to consent to a liver biopsy because it is too dangerous. I don't really want to forgo treatment which could help to relieve the symptoms and perhaps prevent my developing liver cancer but without a confirmation of the diagnosis I won't get the treatment.

There must be someone else out there who has been in this position who could offer an opinion.

Here's hoping
Best wishes
Judyt

#2 miocean

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Posted 12 September 2012 - 06:49 PM

Judy,
I am glad you started this as a new thread. If you do a search on the Medical Pages of ISN for "liver biopsy" you will find all kinds of links including one to a post from you from a long time ago.

The Mayo Clinic also has information on different procedures for liver biopsies and risks. There seems to be several different ways to do one so it would be important to find out which kind the doctor recommends.

Although I did not have a liver biopsy I have had two kidney biopsies, the first when I went into renal failure and on dialysis. This was done through my back, a local was given, needle biopsies taken and a stay in the hospital overnight in case of bleeding. The second was a year after my transplant because my creatinine was rising and my doctor wanted to rule out rejection. This one was done through with a twilight anesthesia and a local through my stomach, needle biopsies and once again an overnight stay. I don't remember what I was told before the first one because I was so sick, but for the second one I was told all the dangers including "there is a transplant surgeon in case the kidney needs to be removed." Boy that was encouraging.


After a myriad of tests the Liver Specialist I consulted has ruled out most things and thinks I probably have Autoimmune Hepatitis and the way to confirm it is a Liver Biopsy.


My thought is how would a confirmation of AH affect your treatment? Would anything be done differently or is it just to get a diagnosis? My first biopsy was done by a nephrologist to diagnose scleroderma renal failure but when I saw my scleroderma specialist a few months later she said it wasn't necessary to do one because I was already diagnosed with scleroderma. It did not change my treatment options in anyway so it was really unnecessary.

I hope you get some answers.

miocean
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#3 judyt

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Posted 12 September 2012 - 08:34 PM

Thanks mio, it is always helpful to hear other opinions about this sort of thing because it gets one thinking on a different track.

From what I remember, the specialist told me that she needs a diagnosis to start treatment, BUT that could be just what I think I remember and not what she said. I do know that she said that she would only ask for a biopsy if it was to confirm treatment!! What is the difference - I don't know.

The course of action she outlined was an Ultra Sound guided biopsy by a person who does lots of this type of biopsy. Not in hospital but at a Radiology Clinic where as far as I know they don't have facilities to keep a person for very long afterwards. Of course now that I am thinking about this I realise I have to phone the Radiology clinic and ask, don't I.

I have read the other links and threads you mention, and I notice that at least one person talked about lying still for 3 hours with pressure on the site to prevent bleeding. Still others talk about being sedated or locally anaesthetised - all those things which I don't know without asking.

I really do miss my previous general practitioner, I feel I could have talked to her about all this stuff and got a straightforward opinion. The new lady I have started going to seems very nice and came well recommended as being very thorough so I guess I am getting around to telling myself what I need to do. I need to phone the Radiology clinic and ask about their procedures then I need to get myself to the general practitioner and find out what she thinks.

We have an excellent health system here, different from the US but similar to UK, which is comforting but without a Scleroderma expert to consult I still feel unsure of myself.

I will look at the Mayo Clinic information, but what is done there and what is done here is still likely to be very different.

Thanks for your input
Judyt

#4 Shelley Ensz

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Posted 13 September 2012 - 10:26 AM

Hi Judy,

I'm proud of you for researching this and taking all the steps necessary to figure out whether a liver biopsy will be a beneficial thing for you, or not. As you know, I'm not much of a fan of procedures -- especially, invasive ones -- that are designed to benefit the doctors much more than the patients, and sometimes that line is blurry. By any measure, liver biopsies carry a lot of risk, so really do press on the question of whether or not the results would change your treatment in any way. And certainly let us know all that you find out along the way, as it is educational for many of us who have not (at least yet) had to deal with scleroderma liver involvement.

Here are some warm hugs to help you along.
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Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#5 judyt

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Posted 13 September 2012 - 07:18 PM

Progress of a sort. I called the Radiology Clinic yesterday and this morning received a return call from their nurse. I told her my concerns and was quite pleased with her response, and in particular, pleased that I asked.

She told me that for a start I would be there up to 4 hours and 3 hours at least. First they do a clotting test to confirm that one's blood clotting time is acceptable on that day. I know that it can vary. Then once that is acceptable a local anaesthetic is administered and the biopsy procedure is done guided by the Ultra Sound so the Doctor can see what he/she is doing.

Afterwards you stay in the recovery area, there can be some shoulder pain and a wheat bag is probably enough to soothe that. The big fear is uncontrollable bleeding and should that happen in these first few hours it is straight to the hospital which is a 5 minute ambulance drive away. When all goes well it is a case of going home with somebody else to be there until the next day to be sure nothing goes wrong. Where we live when we are in the city is another trip of only 5 minutes to the Emergency Dept of the hospital so I guess I do feel a bit more sure about it all.

I have made an appointment to see my general practitioner next Wednesday to check with her the finer details of the treatment options - just hoping the specialist has spelled that out in her report. I have a horrible cough this week so will wait until that settles down before I make any more plans.

So there is where I am at the moment.
Best wishes
Judyt

#6 Joelf

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Posted 14 September 2012 - 09:44 AM

Hi Judy,

It's a good thing to find out all the ins and outs of the procedure. Thankfully, I haven't had liver involvement, but I do recall in the beginning that my consultant suggested a lung biopsy; as it happened it wasn't considered necessary after I had the bronchioscopy, as my consultants felt they had all the information they needed to diagnose and treat me and like Shelley has said, they didn't really like just doing a procedure for the sake of it (for which I was extremely grateful! ;) )

However you decide to proceed, please know that I'm concerned for you and thinking about you.

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Kind regards,

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#7 miocean

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Posted 14 September 2012 - 05:07 PM

Wow, it is all coming back to me...I had a lung biopsy when I was first hospitalized, not fun as I wasn't sedated and it was awful having whatever it was they used stuck down my throat. In he end, the results of the biopsy were inconclusive because not enough tissue was taken.

That was when I was so very sick I couldn't and didn't know to question tests like that. In all honesty, anything they found from the biopsy if they had obtained enough tissue would not have changed anything anyway.

Good luck Judy! Are they going in through your neck (because you said your shoulder might be sore?) Looks like you have covered all your bases and asked the questions you needed to. I am glad you feel better.

miocean
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#8 judyt

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Posted 14 September 2012 - 05:50 PM

Thanks again mio.

Apparently, there are nerves which radiate from the area of your liver up to your shoulder!! :emoticon-dont-know: and during a procedure like this they can be irritated. I have experienced shoulder pain before after surgery on my stomach but in that case it was because of the air which is pumped into you to expand everything and make it easier/possible to do keyhole surgery. I can imagine being pumped up like a blimp then somebody has to try to squash it all out again - the mind boggles. In some cases, because the air is lighter than everything else some bubbles drift up into your shoulder area and oh my! is that painful or what.

This time I imagine it would be more like a toothache sort of pain or neuralgia if a wheat bag will settle it down.

I am coming to the realisation that I have to consent, really, or risk being unable to control whatever it is that is going on. My general practitioner will probably tell me the same thing when I see her next week.

I will let you know.
Judyt

#9 miocean

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Posted 15 September 2012 - 05:58 AM

Judy,
The night before my kidney biopsy my nephrologist called to tell me all my labs in the pre-admisssion testing were good and that I didn't have to do the biopsy after all! However, he warned me that if my creatine shot up again it would have to be done. Having had all the tests done and being mentally prepared I decided to go ahead and have it done.

For me, it was better to know at that time then to go through uncertainty and stress only to have to do it in the future.

miocean
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