Aa
Any idea what might be wrong?
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!)
If you think that you might have come across this or something similar please could you let me know and how they treated it?
Thank you very much
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!)
If you think that you might have come across this or something similar please could you let me know and how they treated it?
Thank you very much
I am sorry that I have no idea what is wrong with you. I did lose alot of weight prior to them diagnosing my aih. what did your biopsy show, & what is your blood work showing? are your enzymes up, have they tested you for all forms of hepatitis? if you have been exposed to any of the viral type hepatitis it doesn't always show up in blood tests right away. I am really confused if they did a biopsy and it didn't show what was wrong or have those results came back yet? Jody
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