Can YOU help?
This forwarded for a friend..
I am suffering from acute hepatitis and liver failure.
I have been in hospital for over a month now and my doctors are
calling me an anomaly.
About two and a half months ago I started feeling a little 'off
colour'. I put it down to stress (of moving house recently and
starting a new job) and the fact that my partner (with whom I live)
had been feeling a bit poorly over a weekend (minor stomach ailments,
a little bit of diarrhoea) because that's how I had started to feel.
Within a week though I knew that it was a little more than that but I
had just started my new job and wasn't going to take a day off sick if
I could help it.
By the end of the first week, I was losing my appetite and feeling
nauseous and an intense itching had started.
Towards the end of my second week, I had not been eating more than a
few bites of food at a time and had had diarrhoea, vomiting and had
(unnoticed by me) begun to change colour to yellow.
On the Thursday of the second week, my partner bumped into me at a
train station on the way home from work and gave me a kiss. As we
pulled apart, he started looking at me strangely saying that I looked
like I had yellow eyes. Having no mirror, I waited 20 minutes and
checked it out in the mirror at home. Sure enough, I had a very
definite tinge of yellow to my skin and the whites of my eyes were
somewhat worse.
That evening, I was vomiting everything that I was eating/drinking
including water.
The next evening, I went to an NHS walk in centre and they told me
that I was jaundiced and to go home and sleep it off and I would
return to normal colour within 4-6 weeks.
On Monday, after having an entire weekend of no food/water and
vomiting bile, I decided that I had to take a day off work and went to
my doctor to arrange a blood test. (thankfully ignoring the first
doctor's advice of 'going home and sleeping it off')
He examined me and found my liver to be tender to the touch and he put
slight pressure on it and triggered off a gag reflex. I told him to
stop otherwise I would be sick and he proceeded to put a little extra
pressure on it and I threw up on the floor(!)
He told me to leave the surgery immediately and go and admit myself to
the nearest hospital and get myself put on a drip. He prescribed some
piriton (anti itching) and some anti sickness tablets. (My doctors
informed me that had I not admitted myself to hospital, then I would
have died from dehydration/starvation within a week. I am looking at
'multiple organ failure' because my liver, kidneys and gall bladder
are under a huge amount of strain.)
Within hours of being put on the drip I was feeling better and all of
the doctors that I had met until that point told me that had I 'gone
home and slept it off' I would have been dead by the end of the week.
(My symptoms apparently wouldn't have changed much – I would have just
got more tired and more grumpy/irritable which I probably would have
put to the hot weather and then I would have gone to sleep and not
woken up.)
After the first week in hospital in isolation, my appetite was
increasing dramatically and I was feeling a lot better. ( I was on a
standard saline and glucose drip and all of my vitals were around the
normal mark.)
My daily blood test results were fluctuating but the only thing that
had really changed was the INR (the blood clotting) and that was very
slowly returning to normal.
By the end of the second week, I was transferred to the Royal Free
where I was being quite sick. I was on N-Acetyl Cysteine and the
doctors had forgotten to mention that one of the side effects would be
severe nausea.
They have done 2 X-rays, 2 Ultrasounds, 4 CT scans and one Liver
biopsy and they still are no closer to a solution. They want me to
stay as a long term In Patient with no plans for treatment.
I am feeling physically better now and have done since about the end
of the second week in hospital, I am eating lots of different foods
(have been for a couple of 3 course meals in the last week, eaten
entire roast dinners (and desserts) duck, chicken, pork, eggs, dairy,
fish, fruit, drinking around 4 litres of pure water a day plus some
milkshakes and other fruit juices) I have been sick once recently and
that was due to overeating(!) I had had a three course meal and then
decided to continue to eat a huge pot of very acidic fruit.
Unfortunately saw the fruit again which was, to be fair, my own silly
fault. (but oh, it tasted good!!)
My liver no longer feels tender to touch and I cant feel it with my
fingers any more even though my doctors are telling me that its
getting more inflamed. They are saying that some of my blood tests are
very slowly turning for the worse and they want me to stay in hospital
'in case something happens/changes for the worse'
I am still in regular contact with a doctor from the first hospital
that I was at who has taken a personal interest in my case because its
so unique.
I spend all day every day in hospital watching DVDs and reading books.
I eat all of the meals that I am given (and sometimes more) I took
myself off of the drip called N-Acetyl Cysteine because the doctors
said that it wasn't actually doing anything except making me feel
sick)
I am drinking, my bowels are moving freely of their own accord. I no
longer feel any nausea/sickness; don't have diarrhoea, don't feel
lethargic (I feel very energetic some days and most days am to be
found roaming the hospital wearing a night dress and holding a laptop
under my arm in search of entertainment!)
My initial symptoms
* Sickness/vomiting – not even being able to retain sips of water
* Lethargy
* Diarrhoea (very pale stools, cream in colour)
* Intense itching
* Severe lack of appetite
* Very dark urine (looks like coca cola)
* Jaundiced (yellow – bilirubin count average 600)
* Inflamed liver (to 1/3 its size again) tender to touch
What they have done
After a month in hospital – they have tried me on a 6 day course of
steroids and a drip called N-Acetyl Cysteine which lasted for about 5
days neither of which has had an effect.
I was kept in contact isolation for a week because they thought that I
was infectious and then realised that I wasn't. Then I stopped being
sick and have only been sick more recently as a direct side effect of
N-Acetyl Cysteine and over eating.
They did a liver biopsy (Through the jugular) and informed me that
half of my liver cells were dead and the other half were newly
regenerated and at some point in the last 2 months my whole liver had
inexplicable died and began regenerating.
Take my blood sugar levels every 3 hours and only pull arterial blood
for analysis. (ouch!)
(Official names for steroids used: Prednisolone (8 X 40mg tablets)
(Names of all medication consumed in hospital –
Vitamin K (1 X10 mg) for two days
Cholestymmine (1 X g) for three days
Mebclopmnide (3 X 10 mg) for three days
Clinitra (3 X energy supplement drink) for one week
Prednisolone (40 mg) for 3 days
Omepazle (20mg) for 3 days
Calcicle D Fote (3 days)
Aqueous Menthol Cream (as required)
Piriton (As required – no more than every 6 hours)
What has been ruled out
* Malaria
* Hepatitis A,B,C,D,E
* Exotic diseases
* Sexually transmitted disease
* Auto immunity of the liver
My current symptoms
* Jaundiced (bilirubin count around 650-700)
* Dark urine and pale stools. (fluctuate in colour quite
dramatically depending on what I've eaten, but will usually change
overnight)
* Itching
Other information
* I have not been in a position where I have had my drink spiked.
* I do not take any recreational drugs and have never done any.
* I do not/have never smoked.
* I do not take the contraceptive pill.
* I do not drink excessively and my monthly consumption of alcohol
would have to be less than 6 units (2/3 small bottles of cider)
* I am not depressed/suicidal and did not try to commit suicide by
taking paracetamol/aspirin.
* I do not generally take other forms of medication
herbal/prescribed or other. (I can remember the last medication that I
took, - a piriton for the itching before I came to hospital, a nasal
spray to counteract what I thought was the beginning of a cold and an
anti inflammatory (Ibuprofen) to counteract the swelling as a result
of the itching. (All of which were taken AFTER the initial symptoms
had occurred.)
* I do not eat shellfish usually, though I do buy small prawns and
have prawn cocktail jacket potatoes.
* I have not been exposed to anyone with liver disease and there
is no history of it in anywhere in the family.
* Though I travelled to Rio de Janeiro (Brasil) in January, I did
not pick up any exotic diseases and this is not a result of anything
that I have picked up as nothing has shown up in my blood.
n.b Just as an after note – it has been noted by several different
people on different occasions(including nurses and two doctors) that I
appear to get less yellow towards the end of the day: my theory is
that I am drinking and eating so I am pushing things through my system
and the yellow fluctuates.
If you know or have any idea what this is, please please could you let
me know because no one here has a clue!
My doctors are going a little crazy with my case and am now in the
**** hospital in London. I am in a specialist liver ward and
they don't know how to treat me because they don't know that the cause
is.
Please pass this onto anyone who may be able to help me because I cant
be the only person in the world to have this happen to them!
Thank you very much!
I am suffering from acute hepatitis and liver failure.
I have been in hospital for over a month now and my doctors are
calling me an anomaly.
About two and a half months ago I started feeling a little 'off
colour'. I put it down to stress (of moving house recently and
starting a new job) and the fact that my partner (with whom I live)
had been feeling a bit poorly over a weekend (minor stomach ailments,
a little bit of diarrhoea) because that's how I had started to feel.
Within a week though I knew that it was a little more than that but I
had just started my new job and wasn't going to take a day off sick if
I could help it.
By the end of the first week, I was losing my appetite and feeling
nauseous and an intense itching had started.
Towards the end of my second week, I had not been eating more than a
few bites of food at a time and had had diarrhoea, vomiting and had
(unnoticed by me) begun to change colour to yellow.
On the Thursday of the second week, my partner bumped into me at a
train station on the way home from work and gave me a kiss. As we
pulled apart, he started looking at me strangely saying that I looked
like I had yellow eyes. Having no mirror, I waited 20 minutes and
checked it out in the mirror at home. Sure enough, I had a very
definite tinge of yellow to my skin and the whites of my eyes were
somewhat worse.
That evening, I was vomiting everything that I was eating/drinking
including water.
The next evening, I went to an NHS walk in centre and they told me
that I was jaundiced and to go home and sleep it off and I would
return to normal colour within 4-6 weeks.
On Monday, after having an entire weekend of no food/water and
vomiting bile, I decided that I had to take a day off work and went to
my doctor to arrange a blood test. (thankfully ignoring the first
doctor's advice of 'going home and sleeping it off')
He examined me and found my liver to be tender to the touch and he put
slight pressure on it and triggered off a gag reflex. I told him to
stop otherwise I would be sick and he proceeded to put a little extra
pressure on it and I threw up on the floor(!)
He told me to leave the surgery immediately and go and admit myself to
the nearest hospital and get myself put on a drip. He prescribed some
piriton (anti itching) and some anti sickness tablets. (My doctors
informed me that had I not admitted myself to hospital, then I would
have died from dehydration/starvation within a week. I am looking at
'multiple organ failure' because my liver, kidneys and gall bladder
are under a huge amount of strain.)
Within hours of being put on the drip I was feeling better and all of
the doctors that I had met until that point told me that had I 'gone
home and slept it off' I would have been dead by the end of the week.
(My symptoms apparently wouldn't have changed much – I would have just
got more tired and more grumpy/irritable which I probably would have
put to the hot weather and then I would have gone to sleep and not
woken up.)
After the first week in hospital in isolation, my appetite was
increasing dramatically and I was feeling a lot better. ( I was on a
standard saline and glucose drip and all of my vitals were around the
normal mark.)
My daily blood test results were fluctuating but the only thing that
had really changed was the INR (the blood clotting) and that was very
slowly returning to normal.
By the end of the second week, I was transferred to the Royal Free
where I was being quite sick. I was on N-Acetyl Cysteine and the
doctors had forgotten to mention that one of the side effects would be
severe nausea.
They have done 2 X-rays, 2 Ultrasounds, 4 CT scans and one Liver
biopsy and they still are no closer to a solution. They want me to
stay as a long term In Patient with no plans for treatment.
I am feeling physically better now and have done since about the end
of the second week in hospital, I am eating lots of different foods
(have been for a couple of 3 course meals in the last week, eaten
entire roast dinners (and desserts) duck, chicken, pork, eggs, dairy,
fish, fruit, drinking around 4 litres of pure water a day plus some
milkshakes and other fruit juices) I have been sick once recently and
that was due to overeating(!) I had had a three course meal and then
decided to continue to eat a huge pot of very acidic fruit.
Unfortunately saw the fruit again which was, to be fair, my own silly
fault. (but oh, it tasted good!!)
My liver no longer feels tender to touch and I cant feel it with my
fingers any more even though my doctors are telling me that its
getting more inflamed. They are saying that some of my blood tests are
very slowly turning for the worse and they want me to stay in hospital
'in case something happens/changes for the worse'
I am still in regular contact with a doctor from the first hospital
that I was at who has taken a personal interest in my case because its
so unique.
I spend all day every day in hospital watching DVDs and reading books.
I eat all of the meals that I am given (and sometimes more) I took
myself off of the drip called N-Acetyl Cysteine because the doctors
said that it wasn't actually doing anything except making me feel
sick)
I am drinking, my bowels are moving freely of their own accord. I no
longer feel any nausea/sickness; don't have diarrhoea, don't feel
lethargic (I feel very energetic some days and most days am to be
found roaming the hospital wearing a night dress and holding a laptop
under my arm in search of entertainment!)
My initial symptoms
* Sickness/vomiting – not even being able to retain sips of water
* Lethargy
* Diarrhoea (very pale stools, cream in colour)
* Intense itching
* Severe lack of appetite
* Very dark urine (looks like coca cola)
* Jaundiced (yellow – bilirubin count average 600)
* Inflamed liver (to 1/3 its size again) tender to touch
What they have done
After a month in hospital – they have tried me on a 6 day course of
steroids and a drip called N-Acetyl Cysteine which lasted for about 5
days neither of which has had an effect.
I was kept in contact isolation for a week because they thought that I
was infectious and then realised that I wasn't. Then I stopped being
sick and have only been sick more recently as a direct side effect of
N-Acetyl Cysteine and over eating.
They did a liver biopsy (Through the jugular) and informed me that
half of my liver cells were dead and the other half were newly
regenerated and at some point in the last 2 months my whole liver had
inexplicable died and began regenerating.
Take my blood sugar levels every 3 hours and only pull arterial blood
for analysis. (ouch!)
(Official names for steroids used: Prednisolone (8 X 40mg tablets)
(Names of all medication consumed in hospital –
Vitamin K (1 X10 mg) for two days
Cholestymmine (1 X g) for three days
Mebclopmnide (3 X 10 mg) for three days
Clinitra (3 X energy supplement drink) for one week
Prednisolone (40 mg) for 3 days
Omepazle (20mg) for 3 days
Calcicle D Fote (3 days)
Aqueous Menthol Cream (as required)
Piriton (As required – no more than every 6 hours)
What has been ruled out
* Malaria
* Hepatitis A,B,C,D,E
* Exotic diseases
* Sexually transmitted disease
* Auto immunity of the liver
My current symptoms
* Jaundiced (bilirubin count around 650-700)
* Dark urine and pale stools. (fluctuate in colour quite
dramatically depending on what I've eaten, but will usually change
overnight)
* Itching
Other information
* I have not been in a position where I have had my drink spiked.
* I do not take any recreational drugs and have never done any.
* I do not/have never smoked.
* I do not take the contraceptive pill.
* I do not drink excessively and my monthly consumption of alcohol
would have to be less than 6 units (2/3 small bottles of cider)
* I am not depressed/suicidal and did not try to commit suicide by
taking paracetamol/aspirin.
* I do not generally take other forms of medication
herbal/prescribed or other. (I can remember the last medication that I
took, - a piriton for the itching before I came to hospital, a nasal
spray to counteract what I thought was the beginning of a cold and an
anti inflammatory (Ibuprofen) to counteract the swelling as a result
of the itching. (All of which were taken AFTER the initial symptoms
had occurred.)
* I do not eat shellfish usually, though I do buy small prawns and
have prawn cocktail jacket potatoes.
* I have not been exposed to anyone with liver disease and there
is no history of it in anywhere in the family.
* Though I travelled to Rio de Janeiro (Brasil) in January, I did
not pick up any exotic diseases and this is not a result of anything
that I have picked up as nothing has shown up in my blood.
n.b Just as an after note – it has been noted by several different
people on different occasions(including nurses and two doctors) that I
appear to get less yellow towards the end of the day: my theory is
that I am drinking and eating so I am pushing things through my system
and the yellow fluctuates.
If you know or have any idea what this is, please please could you let
me know because no one here has a clue!
My doctors are going a little crazy with my case and am now in the
**** hospital in London. I am in a specialist liver ward and
they don't know how to treat me because they don't know that the cause
is.
Please pass this onto anyone who may be able to help me because I cant
be the only person in the world to have this happen to them!
Thank you very much!
Aengus42@googlemail.com
