"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)

Saturday, 23 August 2014

Woof

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 'Kiah' is becoming my favourite.  Kiah 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 Kiah 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

2014

JANUARY
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

FEBRUARY
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

MARCH
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.

APRIL
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

Milestone

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.

Sunday, 16 June 2013

Looking good

I have my bloods taken once a month at the local hospital.  The results need to be looked at by the GP before he/she will write a prescription for my next 28 days of Azathioprine immunosuppressant.  This is the drug that treats the autoimmune hepatitis.  If my white blood cell count goes below a certain level, putting me at risk of infection, the GP wont give me more medication without a consult with Dr Al first. 
June's results have come back and are looking good.  The markers of liver inflammation are at an all time low.  ALT is 18, its never been this low (good) in the 3 years of monitoring.  Seems like the Aza is doing its stuff.
Kidney function is holding steady.
AFP tumour marker has come back negative.  Much relief, as when I was hospitalized early this year it started climbing slowly and steadily which got me paranoid again. 
MRI scan next month, and if that comes back clear then all is hunky dory for another 6 months.

Friday, 26 April 2013

Happy Birthday!

 
 
 
 
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear 56 old Fiona
Happy Birthday to me!
 
T made the cake.  He does all the baking; bread and cakes, having been inspired by the 'Great British Bake-Off'.
 
We've had the 'House' DVD for ages but never watched the last episode, so that's my teatime treat today.
Tomorrow I'm to be treated to 'brunch' at a nice local restaurant:
 
 
Thanks to everyone who sent birthday wishes: Dave, Lib, Uncles and Aunts, Susannah, Karen, James&Marion, Val.