"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Monday, 24 August 2015

Update 2015

An overdue, very overdue, update. Prompted by a new reader from the British Liver Trust support forum on Health Unlocked. Thanks liveronmymind! 

Next month, September, it will be 5 years since my liver resection for HCC cancer. Statistically the outlook was bleak. Only 30% of people diagnosed with primary liver cancer live more than 1 yr. after surgery. 

The earlier the tumour is found and the smaller it is when found, the better the outlook.
10% of people are diagnosed early enough for a surgical cure to be the potential outcome. I was in that 10% despite having chronic hepatitis for 20-30 yrs. with no significant symptoms til the month before diagnosis. 
The best outcome for patients with HCC is transplant, 75% will survive and live more than 5 years post-transplant. Some up to 20 years. But you and your liver have to be healthy enough to cope with major surgery, and of course there are long waiting lists for few organs. Can you risk dying waiting? 
Only 15% who have a resection will live more than 5 yrs. unless like me the tumour is solo, encapsulated in a "bubble", less than 3cm, and there is no spread outside small margins. Statistically I had a 50/50 chance of living 5 years. So on September 10th 2015, I shall raise a glass of non-alcoholic fizz and toast my GP, my surgeon, myself and my family - thanks all and here's to the next 5.

It’s difficult to know what causes most symptoms/side effects now. My main symptom is fatigue. Only those with a similar diagnosis understand the fatigue. It’s there all day, every day, like swimming uphill in treacle while trying to be "normal" and do normal things like work, shop, and cook, clean, garden, go for walks or days out. Activity after about 7 o'clock in the evening is a non-starter. I fall asleep, mouth agape, on the sofa in front of the TV. Reading a book in the evening is a hopeless task (I complete my Book Club reading by listening to the book on spoken word CD in the car during the day). Head hits the pillow by 9pm and I'm gone. I can sleep for 10/11 hours and get up still fatigued. Getting up at 5.30/6 am for work shifts is a struggle.

The meds themselves have side effects. The one I take for Hep B causes lactic acidosis a condition when not enough oxygen reaches the blood cells. Makes you kinda tired, lol! Long term it also thins your bones. Hence my diagnosis now of osteoarthritis, more aches and stiffness! Luckily it does its job of keeping the HBV undetectable and hopefully inactive. The main drug for my Autoimmune is Azathioprine, and it’s a good sign that I don't get any gastric upset which sadly many do. The AIH itself causes, guess what, fatigue, aches, flu like symptoms, short term memory loss and muscle tremor.  I drop things unexpectedly and sometimes lose my balance.  Though the activity of the immune system can be controlled by the drugs and therefore reduce the liver damage, none of the symptoms of AIH are reduced by the drugs. Oh, did I mention the night sweats.

So where are things now?  I’m classed medically as being on ‘therapy’ so my GP is obliged to check my white cell count and my liver function monthly.  Occasionally the phlebotomy department who run the tests flag up a comment.  In June it was “some atypical lymphocytes present” which the GP checked with no action.  When presented to my hepatologist in clinic in July he zoned in on it and declared I had glandular fever.  How did that happen?  Looking back I could recall sore throat, swollen neck glands, feeling very hot and more tired than usual.  But I’d carried on pretty much as normal, just missed out dog walking one week as I was struggling with the heat.  Other notes on the blood tests come and go, this month its “polyclonal increase in gamma globulins” (whatever that means) which the GP has made no comment on. My IgG immunoglobulin has been around double upper normal for the last 4-5 years.

I’ve been walking the rescue dogs for a year now.  Only missed about 3 sessions I think.  Arnie, featured in previous post is still there, as is Bob, my favourite now that Ziah has been rehomed.


Saturday, 27 December 2014


My fab Christmas card drawn by T.  

And here are some of the dogs:

Arnie - still there

Ronnie - rehomed 

Vonnie - still there

Rigsby - rehomed

Saturday, 23 August 2014


Went to my GP recently complaining of getting stiffer and stiffer. Not sure if its just 'old age' or something to do with the autoimmune or bone deterioration. She reckons I would benefit from more exercise, perhaps some gentle yoga stretching or non-weight bearing swimming and gives me a voucher for the local Health Centre so I can join classes at a discount. I'm not that keen on gyms and the public swimming at our local pool is during my work hours or not til late in the evening when I'm falling asleep. A garden colleague of T's walks dogs once a week at our local rescue centre, so I'm giving that a go. Last week I went for the first time and walked one of these:

one of these:

one of these (a cockapoo?)

and 2 of the inevitable Staffie/Cross breed of which there seem to be many in rescue kennels

I walk 5 dogs in an hour.  This Staffie/Cross called 'Ziah' is becoming my favourite.  Ziah was abandoned in a locked flat for several days before rescue.  He's been at the centre for over a year now, and despite a dislike for small furry things (cats, birds, the downy filling of his bedding!) his expression in this pic says he cant understand why he hasn't got a settled home.  Sorry Ziah you cant come and live with me as I'm out a lot of the day, but I will keep coming to walk you until you find somewhere permanent.

Below is Bob.  Bob has also been at the home for too long. He's been good on the lead so far, just have to watch his tendency to find smelly things to roll in!  

Wednesday, 9 April 2014


I've been having trouble with my lower back and hips for a while, so the GP sends me to the physio.  Physio says I am quite 'bendy' and don't seem to be having trouble with the stretching exercises she gives me.  But it's painful when she rotates the leg/hip joint.  So off for an x-ray.  This diagnoses  degenerative changes to the sacroiliac joints on both sides.  I'm not sure what that means, but I think it's osteoarthritis.  I'd been waking 5-6 times a night so the GP prescribes amitriptyline which in low doses is used in pain relief.  Just half the prescribed dose works and now I can sleep with less disturbance, though I have to take it very early in the evening so that I can get up at 6am for work and not feel hung-over.
24th Jan I have my 6monthly MRI.  4 days later the report comes back "no evidence of residual or recurrent disease".  Hurrah, all clear for another 6 months

The atrocious winter weather seems to peak this month in the North West.  J tries twice to get from Uni in Huddersfield to his girlfriend at Oxford Uni, and is foiled both times by train cancellations and landslips.  I try to meet with old school friends near Leamington Spa but have to cancel.
12th Feb I have my 3-monthly clinic at Salford.  In the absence of Dr Al it's run by a hepatologist from the Manchester Royal Infirmary.  Dr P also trained at the Freeman in Newcastle and has experience in treating both viral and autoimmune liver disease.  Interestingly he also runs a liver cancer clinic.  I ask if I can be re-referred to him at the MRI, and he puts me into his cancer clinic.  With the North Manchester team due to relocate to the MRI later in 2014 I will now get all my monitoring at one centre, instead of 3.  Brilliant.
Not so brilliant was the drive home.  Strong winds and horizontal rain, I can feel the car rocking and see the lamp-posts bending, scary.  Pick up T from his office.  We get half way home, then the route is blocked by a tree which has fallen on a car, luckily nobody hurt.  We park up and have a meal in a not very good Italian while the traffic and the weather eases

My yearly cancer check up at North Manchester.  Hopefully the last clinic I will attend there, especially as this time the waiting time was 1 and 1/2 hours.  They give me another appointment in March 2015 which I know I won't be attending.

3rd.  Off to see Dr P at his Manchester Royal clinic.  Instead of driving I can take the train and then catch a shuttle bus at Piccadilly station.  Easy peasy, no traffic jams, no car parking worries.
All the Manchester hospitals are now on one site - the infirmary, the eye hospital, the children's hospital, the women's hospital.  All very modern and airy. Dr P arrives 20 mins late for his clinic which doesn't bode well, but he explains he witnessed a road traffic accident and being a doctor stopped to give first aid to an injured girl.  Now that he will be responsible for treating both my viral and autoimmune liver disease and monitor the liver for cancer, I can cancel my North Manchester clinic and Macclesfield clinic appointments, yippee. All it needs from me is monthly bloods taken by my GP and the rest will be dealt with by him on one site.  
It's a big site and will take a while to get to grips with.  With trips to bloods, pharmacy and the cafe it took 3 hours to get round everywhere, but i should whittle this down once I get more confident around the corridors.

Tuesday, 3 December 2013

The Good, the Sad and the Weird

The sad:  My liver specialist Dr Al is leaving.  He has family in Syria and needs to go back.  For a year, maybe longer.  Nobody knows yet who will replace him.  My next appointment is the end of January, so we shall see.  I was upset to hear that, I feel 'safe' in his care.  But family comes first before patients.

The weird:  When I was in hospital in Jan/Feb Dr Al ran a whole load of extra tests, including all the letters of the hepatitis alphabet.  After 10 months one weird result came back positive: - Hepatitis E.  It can be picked up from food or water due to poor sanitation.  Dr Al says he is seeing an increase in cases in the UK.  Where did it come from?  Baffled again, unless the protective gloves I wear at work don't protect.  It shouldn't become chronic and as my liver function returned to normal after a few weeks he assumes I am clear but has taken the test again to be sure.  Hope I don't wait another 10 months to find out!

The good:  If the liver function flare in Jan/Feb was caused by the Hep E infection instead of the autoimmune, then Dr Al says I can come off the autoimmune meds .... in a year ... after another biopsy.... 

Thursday, 3 October 2013

Blood test results

Apologies for the long gap since last post.

I had my usual monthly blood tests done in August and they showed up a new anomaly.
Something called myelocytes were visible in the blood smear.  Myelocytes are a type of bacteria fighting blood cell found in the bone marrow.  If they appear in the blood, alarm bells ring.  So my GP has referred me to a specialist hematologist.  While we wait for my October 14th appointment to come round, the September blood test was done.  This again showed up rogue myelocytes. 

Normally I would be over the internet like a rash, googling the diagnosis.  This time however I'd rather not know, as generally these cells appear in the circulating blood only in certain forms of leukemia or metastatic cancer in the bone marrow, so I'd prefer not think about it until I've seen the specialist.

On a lighter note, J started University in September.  It took 2 car loads to get all his guitars and amps etc over to Huddersfield.  He is in a flat of 7, and has made some good friends (some for partying, ha ha, and some on his course).  Just about coping with the shopping, cooking, cleaning and laundry on top of the lectures, tutorials, note taking, reading, visits to the library etc etc.  Thank god for Skype where we have conversations about how long after the sell by date its safe to eat from an open pack of bacon and what to look for in gone off carrots!!  He cleverly avoids using the video link though, so we cant see the state of the room that 'needs tidying', ha ha.

Tuesday, 30 July 2013


25th May 2010,
T and I played a 9-hole golf course. The post I wrote then became the first post on this blog.

Yesterday, 29th July 2013, along with T, J and J's girlfriend B, I played a 9-hole chip and putt course for the first time since that 2010 round. Its taken 3 years but managed it fine, tired next day but not stiff or sore. Qualifies as a milestone!

At the beginning of July I had my 6-month MRI scan. Not had a printed report yet (will chase that in a few weeks), but have heard that the images have been seen/discussed at the MDT meeting at North Manchester and all is ok.

Had my 3-month clinic appointment with Dr Al at Salford last Tuesday, and all ok there. Steroids are now being weaned off - I should be free of them in another month. I feel well at the moment, more stamina than since before I started on the Azathioprine, so Dr Al reckons it's doing its stuff. There has been a noticeable improvement to my well-being since starting the Aza whereas the Tenofovir, although it suppressed the viral load of the hepatitis B hasn't made me 'feel' any better. I suspect that all the symptoms I've had over the last 3 years have mainly been caused by the autoimmune hepatitis and the medication for that is finally helping.