What happens when you dont fit the tick box for help.

[Chelseachelsea]

Im trying to find information about other types of hepatitis that are not the normal ones. My sister died of an unknown type and im looking for information on what that means. Can anyone help. Please. Im struggling to cope with her loss but the not knowing is not helping my grief process. She was only 50, not a drinker or smoker, not over weight, fit and active. No previous health conditions. What went wrong? She went into hospital severely dehydrated and jaundiced and that seemed to happen out of nowhere, 32 days later after every test they could offer she died! I need help to understand why.

[AyrshireK]

Sorry to hear about the loss of your sister, especially with it coming so out of the blue and without obvious cause.

As the British Liver Trust admin have explained 'Hepatitis' means inflammation of the liver cells and it sounds like either your sister had an acute episode of liver inflammation which caused her to deteriorate quickly or else she had some form of hepatitis for some time without noticeable symptoms until it had damaged the liver so much it caused serious liver failure - in the absence of the mention of cirrhosis I am only hazarding a guess that it may have been the former i.e. some form of acute inflammation of the liver.

Would you know whether they carried out tests for auto immune hepatitis in her ream of tests ?- unfortunately deciding on a diagnosis of AIH can be a lengthy process. Normally involves blood tests, auto immune markers and normally a liver biopsy. AIH can have very serious and acute presentation (or it can quietly grumble away in the background doing long term damage to the liver).

Usually treatment for AIH would be steroids like prednisolone followed by an immune suppressant but if your sister died before an established diagnosis they may not have got that far but I would imagine that they probably did try treating her inflammation with high dose steroids.

No one knows what triggers the immune system to go into over drive and start attacking your own body parts but there are cases where long term use of Nitrofurentoin for UTI's has been a trigger, green tea extract supplements, various other medications, environmental factors or even post viral issues - a lot of people may have had glandular fever previously and even Covid-19 is now thought to be a potential trigger (and certainly on the AIH Facebook support group just now we have new members who have been told that their AIH is as a result of Covid-19 infection).

I am sure that the doctors tried everything they could to stabilize your sisters condition it's just that they never quite got to grips with what was causing it before it claimed her life.

It may not have been AIH but it is certainly a possibilty, the presentation with jaundice etc. in a previous healthy individual with no obvious health issues nor substance use might tally.

(My husband has cirrhosis due to AIH - he was a fit, long distance walker, life long t-total, non-smoker - no obvious risk factors for liver disease. He almost died due to advanced cirrhosis symptoms but he had no ongoing liver inflammation so once they had stabilized his symptoms he has gone on to remain fairly stable).

Some people have a 'we don't know' diagnosis that gets labelled Cryptogenic Liver Disease - literally meaning they can not establish a cause for it. We've got forum members who had this as a diagnosis and it was only after transplant when the liver was physically examined in the flesh that the doctors could actually see where and what the damaged had been - often these have been the auto immune conditions which are fairly difficult to diagnose and require a jigsaw of test.

Please be assured that doctors would have done absolutely everything in their power to treat your sister though obviously the damage already done was sadly just to great.

Try to remember the better parts of her life rather than constantly reliving her death.

Thoughts with you at this sad time.

Katie x

[Chelseachelsea in reply to AyrshireK]

Hello KatieThank you for your kind response. I’ll try to be brief but my sister Sharon was feeling nauseous for quite some time and she put it down to menopause. I feel quite strongly about this as it clearly was something else going on in her body and as you say hepatitis can be going on in the background with little or no obvious symptoms.

I added my signature to the BLT register when they approached government to ask for things to change when it comes to gps detecting early liver problems. My sister, Sharon had two separate bloods tests that showed her liver enzymes were slightly raised but not worryingly so. She then had an ultrasound that was clear so the gp referred her to a gastroenterologist. Unfortunately, there was obviously more going on in her body than anyone realised and she died between appointments.

Everything happened super fast. Her blood tests and ultrasound were carried out at the beginning of this year by March 11th she was hospitalised and by April 13th we were being told to come in to hospital and say our goodbyes.

In total Sharon had an army of tests including hepatitis A, B, C, D and E. A biopsy, MRI scans, CT scans X-rays, auto immune disease tests, tests for various toxins, tests for cirrhosis and Wilsons Disease. All proved negative. The only thing they found was a small amount of fibrosis.

During her 32 days in hospital she contracted pneumonia, which i now understand is common when the body’s immune defences are low, she also had ascites which I understand goes hand in glove with a failing liver, which she said was incredibly painful. Unfortunately for Sharon and the rest of my family the day the decision was made to send her to the royal free in London she had a massive bleed. Again i now know this is common with back pressure building in the body. This bleed was so significant that it proved to be too much for her body and 10 days after her endoscopy we were told that her life support needed to be turned off.

My struggle with my grief is not knowing what caused my beautiful sister to leave me. Her death certificate says ‘unknown type of hepatitis that lead to liver failure’. What the heck am I supposed to do with that? It means nothing to me and so i find myself stuck trying to make sense of it all.

What is ‘unknown hepatitis’? How can we be living in 2021 with all the technology to hand and i get told her death was unknown?? How?

Thank you for your kind words to think of happier memories and i think i will in time. But at this moment i cant think of anything except what did actually happen to her physically.

[Kristian]

Hi Chelsea, there are many acute infections than can lead to hepatitis and even liver failure in extreme cases. So, it is possible that there may not be a liver disease cause. The impacts on the liver may have just been secondary to whatever it was that was causing the problem. Sepsis is the first one that comes to my mind. Sepsis is basically your body massively over-reacting to an infection and even something very simple can trigger it. I cant give you any real clear steers as to other things it could be. I only know about sepsis as I was affected by it. Hopefully you can get more information from the hospital on other possible causes. It could literally be anything unfortunately and only those with the full information will be able to help properly identify a cause. Sorry about that.

[Chelseachelsea in reply to Kristian]

Hello KristianThank you for your kind response. The doctors did say that they needed to find out what was causing her liver to behave the way it did but they never found the answer. Sharon was tested for many many things including sepsis but all her tests proved negative.