Saw Dr Al in clinic on Saturday. Yes, Saturday. And he was on annual leave!
Another blood test and another good result. ALT is down to 50 which is the upper end of normal. Yay, normal. I can reduce the Prednisolone to 15mg a day. That's down from a starting dose of 8 tablets in hospital reduced to 3 in weeks. Sounds good to me. I asked about coming of the Lansoprazole, and Dr Al said yes. I'm down to x3pred, x2calcium, x1laxatives, x1vitD, x1 tenofovir = 8 pills.
Biopsy combined with the blood test results score me as a 'probable' with autoimmune hepatitis. I score 12. 10-15 is a probable, >15 is a definite.
Still getting side effects from the steroids - puffy eyes, fleshy jowls (popped into work with some paperwork and they noticed the facial changes), tremor, night sweats, fatigue. Hoping these will reduce along with the reduced dose.
ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Monday, 25 February 2013
Thursday, 21 February 2013
Pills and more pills
The good news is I'm now down to 20mg of prednisolone and feel a lot less fuzzy headed.
The not so good news is the side effects of the medication needed to 'protect' me from the side effects of the prednisolone.
Prednisolone (corticosteroids - which mimic the hormones produced by your adrenal glands and suppress inflammation. Not anabolic steroids which have similar effects to testosterone) can give you stomach ulcers, so the docs give you pills to protect your stomach. I'm taking one called Lansoprazole. Its also taken by people with acid-reflux, the thing that gives you heartburn and burps. I dont have that, but for some reason taking Lansoprazole when you dont have heartburn GIVES you heartburn! Or rather a bit of discomfort in the upper chest, shoulders etc. I've looked up comments on other health forums, and yes people do get this as a side effect.
Prednisolone also upsets the calcium balance in your body, so I have to take x2 calcium tablets a day.
Vit D3 helps absorb calcium, so I take Vit D3 daily.
Something (the GP thinks my high carb/low fibre NHS 1 week diet) has upset my digestive system and made me a constipated.
So I take lactulose for that, which makes you windy and burpy and not at all popular around the house.
The lactulose didnt stop me getting prolapsed you-know-what's - those things myth and folklore says you get if you sit on cold concrete - yes 'piles'.
So I take another laxative for that., but this one includes extra sodium and potassium because the laxative itself might deplete sodium and potassium, so we have to monitor my electrolytes as they went a bit wonky in hospital.
Oh, and not forgetting the blue Tenofovir pill
So thats x4pred, x2calcium, x2laxatives, x1acid reflux, x1vitD, x1 tenofovir - 11 pills, 5 of them to combat the side effects of the others.
I managed 3 half days back at work and then this bum problem got too much. My nice GP took one look at it (poor woman, she had sad eyes as she looked at me and said 'aww' and 'ahh' sympathetically a lot) and said go home and lie down on the horizontal. No driving and no work.
I'm signed off til Monday 25th.
Cant say I feel any better than when I came out of hospital. No energy or stamina, no strength, spend a lot of time lying on the sofa, dozing or sleeping.
Tried to do some housework today but it exhausted me and my bum complained at upright gravity!
I go back to see Dr A on Saturday to discuss, and see via blood tests how my body is dealing with these pills and more pills.
The not so good news is the side effects of the medication needed to 'protect' me from the side effects of the prednisolone.
Prednisolone (corticosteroids - which mimic the hormones produced by your adrenal glands and suppress inflammation. Not anabolic steroids which have similar effects to testosterone) can give you stomach ulcers, so the docs give you pills to protect your stomach. I'm taking one called Lansoprazole. Its also taken by people with acid-reflux, the thing that gives you heartburn and burps. I dont have that, but for some reason taking Lansoprazole when you dont have heartburn GIVES you heartburn! Or rather a bit of discomfort in the upper chest, shoulders etc. I've looked up comments on other health forums, and yes people do get this as a side effect.
Prednisolone also upsets the calcium balance in your body, so I have to take x2 calcium tablets a day.
Vit D3 helps absorb calcium, so I take Vit D3 daily.
Something (the GP thinks my high carb/low fibre NHS 1 week diet) has upset my digestive system and made me a constipated.
So I take lactulose for that, which makes you windy and burpy and not at all popular around the house.
The lactulose didnt stop me getting prolapsed you-know-what's - those things myth and folklore says you get if you sit on cold concrete - yes 'piles'.
So I take another laxative for that., but this one includes extra sodium and potassium because the laxative itself might deplete sodium and potassium, so we have to monitor my electrolytes as they went a bit wonky in hospital.
Oh, and not forgetting the blue Tenofovir pill
So thats x4pred, x2calcium, x2laxatives, x1acid reflux, x1vitD, x1 tenofovir - 11 pills, 5 of them to combat the side effects of the others.
I managed 3 half days back at work and then this bum problem got too much. My nice GP took one look at it (poor woman, she had sad eyes as she looked at me and said 'aww' and 'ahh' sympathetically a lot) and said go home and lie down on the horizontal. No driving and no work.
I'm signed off til Monday 25th.
Cant say I feel any better than when I came out of hospital. No energy or stamina, no strength, spend a lot of time lying on the sofa, dozing or sleeping.
Tried to do some housework today but it exhausted me and my bum complained at upright gravity!
I go back to see Dr A on Saturday to discuss, and see via blood tests how my body is dealing with these pills and more pills.
Thursday, 14 February 2013
Good ALT
Test taken on Tuesday (3 days ago) show ALT level now down to 123. From the 660 two weeks ago. At this rate it will be back in normal range (20-50) by the weekend. I can reduce the steroids again, hurray. By the time I go back to see Dr Al in 2 weeks I should be on the lowest maintenance dose and hopefully feeling the benefit of less drugs.
Wednesday, 13 February 2013
Fuzzy wuzzy
Saw the hepatologist yesterday, Tuesday. The results of the Hep B viral load are back. It's detectable again, at a very low level of 15units and probably not the cause of the high liver enzyme ALT. However it means I cant continue on the lower dose of Tenofovir and will need to up to the dose and watch how my kidneys cope.
The biopsy results are back. Dr Al wants to go through the report in detail alongside the histopathologist. But based on the summary he has, it's saying the same as the previous one done in 2011 - probably autoimmune alongside the chronic Hep B.
So for now I continue with the treatment for the Hep B. I continue treatment with high dose steroids to get the autoimmune inflammation down. I go back to see him every 2 weeks to have bloods drawn to assess how well or otherwise the steroids are bringing down the ALT level.
Once the ALT is down to acceptable levels we introduce a new drug, an immunosuppressant, and wean me off the steroids.
On the plus side the aches and pains I've been reporting to Dr Al for 2 years have all gone. Which suggests that they were caused by whatever the steroids are 'curing'.
On the minus side, the steroids are messing with my head and my sense of well-being. My head feels fuzzy wuzzy, my cognitive function is fuzzy wuzzy, my speech seems fuzzy wuzzy. I have a spaced out feeling, with heavy limbs and a sense of wading through treacle. At the same time it feels kind of 'speedy' with night sweats and disturbed sleep. Dr Al assures me its the drugs, so hopefully these side effects will ease as the steroids reduce.
Snowing lightly here, a bit blizzardy. Winter isnt over yet.
The biopsy results are back. Dr Al wants to go through the report in detail alongside the histopathologist. But based on the summary he has, it's saying the same as the previous one done in 2011 - probably autoimmune alongside the chronic Hep B.
So for now I continue with the treatment for the Hep B. I continue treatment with high dose steroids to get the autoimmune inflammation down. I go back to see him every 2 weeks to have bloods drawn to assess how well or otherwise the steroids are bringing down the ALT level.
Once the ALT is down to acceptable levels we introduce a new drug, an immunosuppressant, and wean me off the steroids.
On the plus side the aches and pains I've been reporting to Dr Al for 2 years have all gone. Which suggests that they were caused by whatever the steroids are 'curing'.
On the minus side, the steroids are messing with my head and my sense of well-being. My head feels fuzzy wuzzy, my cognitive function is fuzzy wuzzy, my speech seems fuzzy wuzzy. I have a spaced out feeling, with heavy limbs and a sense of wading through treacle. At the same time it feels kind of 'speedy' with night sweats and disturbed sleep. Dr Al assures me its the drugs, so hopefully these side effects will ease as the steroids reduce.
Snowing lightly here, a bit blizzardy. Winter isnt over yet.
Wednesday, 6 February 2013
Back home
Liver biopsy done Tuesday 5th afternoon. Wow that was painful this time. Poor nursey had me squeezing her hand real tight. I thought it might be bad so asked for a shot of Diapezam before, to relax me. But it still hurt, even after 2 jabs of Lidocaine anaesthetic.
They went in through the ribs.
Nice radiographer. While chatting, he told me it seems the liver cancer team I'm under at the moment will be re-locating to another hospital in the next few months. It will be closer to where T works, and accessible to me by train, so that sounds better for the long haul.
Bed rest for the rest of the day, and well enough to be discharged today, Wednesday 6th.
More blood results are back, strengthening the autoimmune diagnosis.
A test of my immunoglobins shows the iGg raised, as it was in April 2011 when Dr Al first suspected autoimmune alongside the Hep B. Immunoglobulins are part of your immune system, so this means mine is on the defensive again.
The next test is more significant. Back at the end of 2010/2011 I was getting very angry waiting for someone to explain a baffling result for a test called 'Smooth Muscle Antibody' or SMA which is used in the diagnosis of autoimmune conditions. The way they test is the blood is like this (quote from 2011 blog entry):
For this test the technician repeatedly dilutes my blood sample until the dilution is so weak he can no longer see antibodies. Imagine putting 10 drops of Ribena in 10ml of water. Held up to the light it looks Ribena colour. Now top the water up to 20ml. The Ribena colour gets weaker but is still blackberry colour. Now top it up to 40ml. It's gone wishywashy pale. Dilute it again to 80ml (that's about 1/8 of a pint). It looks clear now, no sign of Ribena at all.
If the technician puts drops of my blood in solution, dilutes it 30 times and can't see antibodies, it's a negative test. If he puts drops of blood in the same solution and CAN see antibodies, it's a weak-positive test. If he dilutes it x100 times and can still see antibodies, it's definitely positive.
He carried on with my blood sample, continually seeing positive antibodies until he had reached the maximum dilution they can possibly test to in that laboratory. He diluted my sample 800 times and could STILL see antibodies.
"So it's positive" I ask. "Yes", he said, "PARTICULARLY STRONGLY POSITIVE".
Dr Al has run this test again. Its 1:640, which means they diluted it to a ratio of one drop of blood to 640 of solution and can still see the result. Very very positive again. 'Normal', or a negative result is a dilution of 1:20 ratio.
I go back to clinic next Tuesday 12th, to hopefully get results of biopsy and work on THE PLAN of what to do next.
They went in through the ribs.
Nice radiographer. While chatting, he told me it seems the liver cancer team I'm under at the moment will be re-locating to another hospital in the next few months. It will be closer to where T works, and accessible to me by train, so that sounds better for the long haul.
Bed rest for the rest of the day, and well enough to be discharged today, Wednesday 6th.
More blood results are back, strengthening the autoimmune diagnosis.
A test of my immunoglobins shows the iGg raised, as it was in April 2011 when Dr Al first suspected autoimmune alongside the Hep B. Immunoglobulins are part of your immune system, so this means mine is on the defensive again.
The next test is more significant. Back at the end of 2010/2011 I was getting very angry waiting for someone to explain a baffling result for a test called 'Smooth Muscle Antibody' or SMA which is used in the diagnosis of autoimmune conditions. The way they test is the blood is like this (quote from 2011 blog entry):
For this test the technician repeatedly dilutes my blood sample until the dilution is so weak he can no longer see antibodies. Imagine putting 10 drops of Ribena in 10ml of water. Held up to the light it looks Ribena colour. Now top the water up to 20ml. The Ribena colour gets weaker but is still blackberry colour. Now top it up to 40ml. It's gone wishywashy pale. Dilute it again to 80ml (that's about 1/8 of a pint). It looks clear now, no sign of Ribena at all.
If the technician puts drops of my blood in solution, dilutes it 30 times and can't see antibodies, it's a negative test. If he puts drops of blood in the same solution and CAN see antibodies, it's a weak-positive test. If he dilutes it x100 times and can still see antibodies, it's definitely positive.
He carried on with my blood sample, continually seeing positive antibodies until he had reached the maximum dilution they can possibly test to in that laboratory. He diluted my sample 800 times and could STILL see antibodies.
"So it's positive" I ask. "Yes", he said, "PARTICULARLY STRONGLY POSITIVE".
Dr Al has run this test again. Its 1:640, which means they diluted it to a ratio of one drop of blood to 640 of solution and can still see the result. Very very positive again. 'Normal', or a negative result is a dilution of 1:20 ratio.
I go back to clinic next Tuesday 12th, to hopefully get results of biopsy and work on THE PLAN of what to do next.
Sunday, 3 February 2013
Hospital update
Admitted Wednesday morning onto a ward called Medical Investigations Unit - which I guess translates into 'we dont know whats up, mind if we keep you here for a bit while we prod and poke you, photograph your insides and shake you upside down to see if any loose bits fall out'.
Had standard blood tests done - liver function, bone profile, what they call U&E which looks at fluid and electrolyte balance. These came back normal apart from the ALT liver test which is still way too high but down a teeny bit to 616.
Sent for an ultrasound which came back same day as pretty much ok - no enlargement of the liver, no blockages. The only new thing was that I had some tenderness and nausea when the ultrasound wand pressed on where my gallbladder/pancreas lay underneath. Yes you read it right, an ultrasound can be reported on same day, when out in my real world it can take 4 weeks!
Further blood tests taken - Hep B viral load, AFP cancer tumour marker, immunoglobulins. These have to be sent off to a different lab and take 4-5 days to come back.
Biopsy was planned for Monday 4th, then brought forward to Friday 1st (was just about to eat some lunch when it was whipped away so I could be Nil By Mouth for a few hours), then moved to Tuesday 5th. I got a sandwich later, never saw the hot meal again, when the Friday slot was changed!
The MIU closes on a Friday, so a bed is found for me on one of the gastroenterology wards upstairs - L2. A ward of about 25 but split into bays and private rooms. I'm in the corner of a 7 bay ward. Nice staff, clean ward, bedside tv. Very hot, you go for a shower and then 10 minutes later sweating again. I'm laughed at for the winter jumper and trousers normal for January in Manchester. Note to self, take in tropical shirt and shorts instead. I can just about sleep under a sheet. The ceiling has air-con fans going round, so at night in dim lighting its like Apocolypse Now.
More NHS food difficult to digest when we are all gastro patients - choices of chips, battered fish, suet pie and gravy, sponge pudding and custard. Where's the fruit, where's the veg! Where's the low fat, low cholesterol, high vitamins, low salt, low sugar, decent protein diet we need! When they weighed me and measured me on admitting, my BMI put me on their 'malnourished' chart, (ha ha ha ha) so I have my food intake recorded each and every day. "Exactly how much of those two weetabix, milk and spoon of sugar did you eat for breakfast?", "You only managed 3/4 of those 2 rounds of soggy toast, tut tut". Maybe this is my way in to a referral to a qualified nutritionist/dietician instead of trying to educate myself on a liver friendly diet.
By Friday night we had concluded, well nothing really. Two possibles: Theory 1 is this could be a flare of the Hep B. The return of the Hep B viral load will confirm or refute this, but it wont be back til Monday at the earliest. Theory 2 is this could be a flare of autoimmune hepatitis. Rather than leave me at risk from the inflammation while we wait for the Hep B result, Dr Al has put me on high dose prednisolone steroids, standard treatment for the acute stage of autoimmune. With the ALT dropping to 590 as my own immune system tries to deal with it, it was deemed safe enough for me to get a day pass home on Saturday, as long as I returned to my hospital bed that night. With a first dose of 40mcg prednisolone inside me, its lovely to be home and have some family cuddles. Have a bath, hairwash, wash and dry my clothes, make a shepherds pie for tea - ooops dont tell Dr Al, I'm probably supposed to be on bed rest. Back to hospital Saturday with no obvious changes to how I feel except my blood pressure is down a bit and I'm a tad shaky, maybe a bit of housework wasnt part of the day pass plan. Another dose of prednisolone this morning and home for Sunday as long as I go back again tonight.
Monday should see a ward round by Dr Al and a catch up on 'The Plan'. Hopefully the missing blood tests and results of more LFTs taken this morning (getting a bit bruised round the wrists and inner elbows now) will be back and a definite decision on the biopsy can be made. If the Hep B is positive we dont do the biopsy, we review 'The Plan' again. If the Hep B is negative we do the biopsy to see if it diagnoses autoimmune, and then review 'The Plan' to treat active autoimmune while continuing the treatment I'm on already for the Hep B.
Had standard blood tests done - liver function, bone profile, what they call U&E which looks at fluid and electrolyte balance. These came back normal apart from the ALT liver test which is still way too high but down a teeny bit to 616.
Sent for an ultrasound which came back same day as pretty much ok - no enlargement of the liver, no blockages. The only new thing was that I had some tenderness and nausea when the ultrasound wand pressed on where my gallbladder/pancreas lay underneath. Yes you read it right, an ultrasound can be reported on same day, when out in my real world it can take 4 weeks!
Further blood tests taken - Hep B viral load, AFP cancer tumour marker, immunoglobulins. These have to be sent off to a different lab and take 4-5 days to come back.
Biopsy was planned for Monday 4th, then brought forward to Friday 1st (was just about to eat some lunch when it was whipped away so I could be Nil By Mouth for a few hours), then moved to Tuesday 5th. I got a sandwich later, never saw the hot meal again, when the Friday slot was changed!
The MIU closes on a Friday, so a bed is found for me on one of the gastroenterology wards upstairs - L2. A ward of about 25 but split into bays and private rooms. I'm in the corner of a 7 bay ward. Nice staff, clean ward, bedside tv. Very hot, you go for a shower and then 10 minutes later sweating again. I'm laughed at for the winter jumper and trousers normal for January in Manchester. Note to self, take in tropical shirt and shorts instead. I can just about sleep under a sheet. The ceiling has air-con fans going round, so at night in dim lighting its like Apocolypse Now.
More NHS food difficult to digest when we are all gastro patients - choices of chips, battered fish, suet pie and gravy, sponge pudding and custard. Where's the fruit, where's the veg! Where's the low fat, low cholesterol, high vitamins, low salt, low sugar, decent protein diet we need! When they weighed me and measured me on admitting, my BMI put me on their 'malnourished' chart, (ha ha ha ha) so I have my food intake recorded each and every day. "Exactly how much of those two weetabix, milk and spoon of sugar did you eat for breakfast?", "You only managed 3/4 of those 2 rounds of soggy toast, tut tut". Maybe this is my way in to a referral to a qualified nutritionist/dietician instead of trying to educate myself on a liver friendly diet.
By Friday night we had concluded, well nothing really. Two possibles: Theory 1 is this could be a flare of the Hep B. The return of the Hep B viral load will confirm or refute this, but it wont be back til Monday at the earliest. Theory 2 is this could be a flare of autoimmune hepatitis. Rather than leave me at risk from the inflammation while we wait for the Hep B result, Dr Al has put me on high dose prednisolone steroids, standard treatment for the acute stage of autoimmune. With the ALT dropping to 590 as my own immune system tries to deal with it, it was deemed safe enough for me to get a day pass home on Saturday, as long as I returned to my hospital bed that night. With a first dose of 40mcg prednisolone inside me, its lovely to be home and have some family cuddles. Have a bath, hairwash, wash and dry my clothes, make a shepherds pie for tea - ooops dont tell Dr Al, I'm probably supposed to be on bed rest. Back to hospital Saturday with no obvious changes to how I feel except my blood pressure is down a bit and I'm a tad shaky, maybe a bit of housework wasnt part of the day pass plan. Another dose of prednisolone this morning and home for Sunday as long as I go back again tonight.
Monday should see a ward round by Dr Al and a catch up on 'The Plan'. Hopefully the missing blood tests and results of more LFTs taken this morning (getting a bit bruised round the wrists and inner elbows now) will be back and a definite decision on the biopsy can be made. If the Hep B is positive we dont do the biopsy, we review 'The Plan' again. If the Hep B is negative we do the biopsy to see if it diagnoses autoimmune, and then review 'The Plan' to treat active autoimmune while continuing the treatment I'm on already for the Hep B.
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