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.

 

 

Transplant talk

Had my 3-monthly clinic appointment with Dr Al, my hepatologist, yesterday.

It was a joint clinic with a consultant hepatologist from the Queen Elizabeth Hospital Birmingham, one of the UK's transplant centres.
Dr El had obviously read up my case notes and was pretty sure I contracted the Hep B in Kenya, based on the genotype and the dates.  How I contracted it still isn't clear.
He backed up Dr Al's treatment plan for the overlap Hep B and autoimmune.
And then dropped a bombshell.
If the cancer comes back he would take me on at Queens for a liver transplant.  He thinks I was 'lucky' that the tumour 2 1/2 years ago was small and on the outer edge of a segment.  I may not be so 'lucky' next time.  And like O'Blimey my surgeon, he is pretty sure there will be a next time.  He said that once you get cell changes in one part of the liver it tends to happen elsewhere.  So to continue with the 6-monthly MRI scans and, in his words, if there is so much as a whiff of anything suspicious I go for transplant assessment.

Springtime in Bollington

The view from our back window this morning.

Snow and an icy cold east wind on the second day of Spring.

Back to work

Latest lot of blood test results look ok (just one out of range, my immune system, no surprise there).

So back to work today.
See how it goes.

Dose reduction

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.

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.

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.