I was admitted to King's on Monday. I knew it was coming and I had hoped it wouldn't be at the weekend as it was Little N's birthday and I was looking forward to marshalling the start of the London Marathon again. So I was quite ready for the call on Monday to say can you come in now?
I had known for a week that my blood results were particularly high - AST, ALP, GGT etc and further investigation was necessary. On Tuesday I had a rather uncomfortable Liver Biopsy, and on Wednesday, a CT scan.
Following the biopsy, 3 years and 4 months after my Super Urgent Liver Transplant, I was told that the disease that had originally most likely destroyed my liver, was back. Autoimmune Hepatitis (AIH) to be exact. The CT showed that there was nothing more austere to worry about and that the stent I have temporarily in my bile duct, was correctly positioned and looked to be working well.
My initial reaction to finding out that the AIH was back, was that of complete shock, and I could only speak to some of my immediate family whilst I came to terms with what could possibly be the outcome. I NEEDED to be strong - I didn't want to weaken - so many other people have so much more to be concerned about than me - how dare I!!?!
But with a night to sleep on this information and a night to write down endless questions that the doctors answered the next day, I now know that all is not sad or bad! My life expectancy will be no different to a normal transplantee (70ish% at 5 years) and the disease should easily go into remission - hence a rather high course of steroids to get the hepatitis (translated means "swollen liver") to calm down my gifted organ!! And close monitoring I expect...
Stav and Summer came up to Denmark Hill to meet me on the train on Thursday and I was discharged. Prior to one of our Group Mentoring Sessions, two of my lovely transplantee friends came to visit - and I met another at Victoria Station!
So life goes on - and it is good! I will have weekly visits to King's for blood tests and a Consultant appointment (often you see Registrars etc) - and I can already feel that my energy levels are rising! In fact it is only now that I realise how tired I got over the last few weeks!!
My hair continues to fall out. But I still know it will stop. Today, Sunday, my arm has mysteriously brusied - but I'm sure I must of knocked it without realising. These are nothing. I can still go to pilates, energetically walk the dog and just spent the whole weekend on the Time Keeping stand. xxx
Friday 30 April 2010
New At This!
How scary! New blog! Follow me through my journey of life, the universe and everything!!
Until November 2006 I lived a happy existence of being a mum of two, partner of one - happy - contented..and most of all...healthy...
Then I turned yellow... My running friend S spotted it first, but I laughed and off we went, jogging round Reigate Priory Park like every other Saturday. Sunday, I was at A&E in East Surrey, whipped through at top speed; canulated, admitted.
Ten days later I was transferred by ambulance to King's College Hospital, Denmark Hill, SE London - the number one liver transplant unit in Europe. Within a week I was diagnosed with possible Autoimmune Hepatitis - or in English, a swollen liver caused by an autoimmune disease. Basically my immune system had ceased to recognise my liver as being an active, functioning organ and had started attacking it so violently, that on December 26th - Boxing Day - I was put on the Super Urgent Liver Transplant List. Later I found out that this meant I had up to 3 days to live.
I was lucky - so very lucky! A family had been loving and thoughtful enough to have discussed organ donation on their death - and if it wasn't for them, I wouldn't be here. In the early hours of 27th December, I was given the greatest gift I could possibly receive that Christmas - a new liver.
This blog is about how life changes - how my life has changed - how such sadness can be turned around into happiness and total positivity.
Sadly, this week I was diagnosed once again with Autoimmune Hepatitis (3 years post transplant) - but it has been caught early and with the wonderful support of King's, there is no reason why I should not continue my life as I have been since 2006...
Until November 2006 I lived a happy existence of being a mum of two, partner of one - happy - contented..and most of all...healthy...
Then I turned yellow... My running friend S spotted it first, but I laughed and off we went, jogging round Reigate Priory Park like every other Saturday. Sunday, I was at A&E in East Surrey, whipped through at top speed; canulated, admitted.
Ten days later I was transferred by ambulance to King's College Hospital, Denmark Hill, SE London - the number one liver transplant unit in Europe. Within a week I was diagnosed with possible Autoimmune Hepatitis - or in English, a swollen liver caused by an autoimmune disease. Basically my immune system had ceased to recognise my liver as being an active, functioning organ and had started attacking it so violently, that on December 26th - Boxing Day - I was put on the Super Urgent Liver Transplant List. Later I found out that this meant I had up to 3 days to live.
I was lucky - so very lucky! A family had been loving and thoughtful enough to have discussed organ donation on their death - and if it wasn't for them, I wouldn't be here. In the early hours of 27th December, I was given the greatest gift I could possibly receive that Christmas - a new liver.
This blog is about how life changes - how my life has changed - how such sadness can be turned around into happiness and total positivity.
Sadly, this week I was diagnosed once again with Autoimmune Hepatitis (3 years post transplant) - but it has been caught early and with the wonderful support of King's, there is no reason why I should not continue my life as I have been since 2006...
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