End Stage Liver Disease

This is a copy of a letter I wrote to my doctor a few weeks ago.
Names have been withheld to protect the guilty.

Dear Dr *****

Well, this looks like the final challenge. I went for a fibroscan on Monday February 20th 2012. This is a new toy the hospital got for Christmas. As you know it replaces the liver biopsy with a non invasive examination of the liver.
It was a big occasion, Dr ***** was there along with my nurse and two staff nurses who were being trained how to use the £90,000 piece of kit..
My last biopsy was in 2004 and it showed stage 1 liver disease. Because my blood results have been so good and I have been living righteously, (no alcohol, low fat diet and plenty of fruit) we expected it to be still stage one or perhaps stage 2.
Everyone was shocked speechless when it showed stage F4 – end term liver disease. My nurse showed me the scale they use and I was right at the far end, with no further to go.
Dr ***** was stunned and just looked at the floor, the two nurses managed weak sympathetic smiles.
The scene is indelibly printed on my mind.
“How long have I got”, I asked my nurse.
“We don’t know, we have never dealt with this before”.

I’m so glad I did all that research years ago when I was on the chemo treatment, because I do know. When you have had the virus for over 30 years and it begins to move as virulently as this you’ve got three years. That’s provided it doesn’t turn cancerous in which case its six months unless treated successfully.
Of course we don’t know how long the liver has been at this stage already.
I am to be monitored closely but no treatment or advice was offered. New chemo treatments are on the horizon but I’ve suffered enough on them to know I will never try them again. It would be another year of hell for no appreciable gain. It just isn’t worth it.
I am coming to the opinion that the combination therapy treatment, if it fails, weakens the whole system and leaves you less able to fight the virus. It is a well documented fact that if the treatment fails the virus comes back with a vengeance, a sort of rebound effect.

I made an appointment straight away to see you.
The reason I am contacting you now is because at the moment I am being dealt with by the gastroenterology dept.
They have made it quite clear that I am not going to get any extra help from their quarter. It was a case of ;
“You have got end stage liver disease. We don’t know how long you have got – but try not to worry about it. See you in 3 months at your next scheduled appointment”.

In view of this I would like you to arrange an appointment with a heptologist who specialises in HepC. There aren’t many. I need to have my research confirmed so I can make informed choices about my future, such as it is.
Tempus fugit and I would like to have data I can rely on.
It’s been an emotionally testing ten days but I am trying to come to terms with my circumstances. I intend to spend my time left as constructively as I can given the severe limitations the virus puts on me.
And take some time to smell the roses.

So there it is. Only 6 years ago I was at stage one liver disease. Now I have jumped dramatically from stage 1 to stage 4. There is no stage 5. This is end stage liver disease.
I am 57 in 4 weeks time. I intend to enjoy it as there are few birthdays left for me.

Help!!?? Once more, like so many of us, I am faced with a mountain of ignorance. I am tired of asking questions because I am not getting any answers.
So any help or advice would be very, very welcome.
Please leave a comment or email me.
Also, do you see anything wrong with the above picture I have painted? Comments please.

There will be more posts to come, many more. If I can flag up warnings for others my last days will not be in vain.
I have over 2,000 profile reads for this blog. It gets read. So let’s help those that are in the fight.


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