"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)

Friday, 27 May 2011

Happy Birthday J

Now you are old enough to drive one of these:

Instead of this!

Love Mum and Dad

Tuesday, 24 May 2011

Gastroscopy Part II

Tomorrow (25th) I go to hospital for the 2nd attempt at a gastroscopy procedure. That's where they put a camera down my throat and into my stomach to check the state of both and assess the likelihood of internal bleeding.

This time I'm getting the same sedation as Part I, plus an anaesthetic throat spray, plus a drug called Fentanyl which I've only come across as strong pain relief for cancer patients - so not sure what the thinking is behind this last one.

I guess I'll be zonked senseless and sensation-less. I hope I can swallow as soon as I come round or it will freak me out.

At least it's at 8.30am instead of 5.30pm so I dont have to starve myself all day or get more and more anxious.

Will report back once home again.

Home again. Procedure completed this time. My GI consultant did the procedure himself, with the tube designed for babies - how cute!
No varices in the oesophagus. Signs of mildly dilated blood vessels in my stomach caused by the blood pressure changes. No immediate action needed, follow up in clinic.
So a relief to get that out the way and to know it doesnt need to be done again for 2-3 years.

I was heavily sedated with a variety of morphine based products so came home, had some porridge and went to bed for a few hours. I'm still 'not all there' and under hospital instructions not to cook (hurrah) for 24 hours as well as the usual no driving or using heavy machinery!

Have taken 2 days off work, so plenty of time to rest and be pampered.

Friday, 20 May 2011

Hep C Nomads

HepCNomads are an online group of friendly people that have or had hepatitis C. Some of them have been through a treatment programme and cleared the virus, some have not. Some are supporters or carers of family/friends with the virus. Significantly, they provide a lot of online emotional support from people who understand what it is like to have hepatitis.
It's also an educational forum where people planning on starting treatment can learn about treatment, how to prevent side effects and how to maximise their chances of achieving treatment success. Those not going down the treatment route can learn how to care for their liver.
Nomads are well thought of by The British Liver Trust.

Having browsed the internet and not found a good online support forum for Hep B, I joined Nomads. And was welcomed into the community without question.

So if you are reading this blog because you have, or know someone who has, hepatitis click this link

Saturday, 14 May 2011

Finish line

Sometime today (not sure exactly due to US time difference) Running Man crosses the finish line having completed his chemo marathon.

Well done Steve

Wednesday, 11 May 2011

Now I have osteopenia

So I had this DEXA scan thing on 19th April and then completely forgot about it.

Letter arrived today telling me my 'T score' (whatever that is) is -1.9 and is in keeping with osteopenia. Which seems to be a sort of pre-osteoporosis. And that I must go to my GP for meds.


I hope I can treat it with extra Vit D (ha ha, already am) and calcium. I really really do not want to take bisphosphonates. They do horrible things to your oesophagus and digestive tract - not a good idea if your oesophagus is already compromised with the cirrhosis.

So more research into alternatives before going back to the Doc for his opinion.

Tuesday, 10 May 2011

Is there anything to treat?

Saw my hepatologist yesterday.

He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.

He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.

They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.

Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.

So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.

The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.

Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.

As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.

Friday, 6 May 2011

Life expectancy

Saw my GP today.

Asked for his advice on the different diagnosis and treatment plans on the table.

The 'do no treatment but watch for and deal with future symptoms and side effects of worsening liver damage' option versus the 'make an educated guess as to the cause and treat the liver inflammation with lifelong medication plus follow up checks to monitor any effect' option.

His advice was add to the mix your age, your current state of health, your personal circumstances and your family situation and ask 'which of these options gives me the best life expectancy'.

Choose that.

Obvious really.

Thursday, 5 May 2011

Even the best made plans

This is the route between home and the North Manchester hospital where my liver surgeon sees me once every 6 months. Part of the drive is through busy built up areas chokka block with traffic most of the day, so it can take up to 2 hours despite the AArouteplanner optimistically estimating 38 minutes!

Normal clinic procedure would be the patient returning to NM hospital about a week prior to clinic for a CT scan and bloods, so that the surgeon gets to see them before pronouncing his verdict on my health face to face.

Due to kind hearted Macmillan Nurse Clare, the team decided O'Blimey's buddy Dr S, my GI at Macclesfield, could be trusted to organize the CT and the bloods. As you see from the map the distance between the word 'Macclesfield' and the green flag of home is conveniently tiny. So tiny that I'm fine to get myself there and back for the CT without needing support. The IV part of the procedure tends to leave me a bit shaky and certainly not up to a 2 hour drive on my own. The results of the CT and bloods to then be sent electronically/by courier/by carrier pigeon *(delete as applicable) to NM hospital.

Dr S was highly organized and carefully booked my CT for 3rd March - PLENTY of time - 2 months - to get the resulting image and report snail-mailed 26.8miles??


At least I'd taken a copy of the summarized report. And a copy of my AFP blood test result. I almost offered to hole punch them and file them in my file!

So he asked how I was and I said the results suggested I was fine thanks and he said bye see you in 6 months. About 5 minutes out of the 5 hours (including the late running of the clinic).

Tuesday, 3 May 2011

Still in remission

AFP blood test results are back. This is my 3rd cancer tumour marker test since surgery. Still at 1, well within the 'normal' range of 0-10.

Great news.

Sunday, 1 May 2011

Does bad luck come in 3's

Started the day with one of my recurring sinus headaches and a spontaneous nosebleed. Not sure why these happen, as my clotting factor is fine.

Things improved with a walk to see this lovely bluebell wood.

On return, slammed my finger in the car door - ow ouch! Steri-strips, paracetamol, arnica, ice pack and a cuppa tea (if only all our ills could be cured with a cuppa!) sorted that, but I'm fumbly typing with one hand.

For my finale, spilt a packet of sugar on the kitchen floor. Scrunch, crackle, crunch as we walk on it.

That's my 3 so should be safe now.