Surgery Dillema

Plans and talks of my next surgery to repair my hernia, close my wound and revise my scar have been going on for almost 2 years now and is getting me more frustrated and depressed as the pain is getting worst, my mobility is being compromised and i no longer have a social life. The intial plan was to wait for my scar to heal more and wait for my surgeon Prof Rela to come back from India this September. However as usual things never go my way and when Mr Rela returned to the UK he decided to resign so now the dilemma is who is willing to do thhe surgery??? Being such a complicated case most of the surgeons didn't want to take me on and so now i am hoping the other top surgeon, Prof Heaton will take me on and finally do my surgery. However, after Aneisha passing they were all hoping that it would of put me of the idea of going ahead but it hasn't as at the end of the day we are still individuals and what happened to her may not happen to me but i am willing to take the risk as i can't see myself coping with this life for much longer without becoming very depressed and having to take painkillers every 2-4 hours in order to function.

Jo the liver co-ordinator has been absoloutely amazing in helping me, supporting me and just being there all the time. After Holly my counsellor left i thought i wouldn't be able to cope and if it weren't for Jo i would have probably gone down hill so fast.

The plan now is after speaking to Prof Heaton he said he will look into my notes and have a word with Jo and try to come up with a proper plan that he will follow through. In the meantime they are worried about my mentals state again so Jo is working with the new psychologist and the adult team and the Maudsley to put together a care package for me. They feel it will benefit me to have that guidance again that way i won't go back to my darkest place.

So as you can see that i have been trying to cope with everything and get things rolling as next year i want to get my life back and concentrate on my nursing career.

Tribute to a great friend...

It is with great sadness and a heavy heart that i am writing this post as my very good friend lost her battle with liver disease on the 03/12/2010. Since she was diagnosed with wilson disease at the young age of 13 she never gave up on herself and never let her illness get in the way of living a normal life. She went on to having 3 transplants and it was during her wait for her third transplant that i had the pleasure of knowing her while i was waiting for my second transplant. We quickly became good friends and after both our surgeries we went through similar, almost identical complications and was often inpatients at the same time. It was like we were sisters medically and thats what our friendship blossomed into.

Sadly after what was suppose to be her last surgery to remove adhesions and close her wound she didnt make a full recovery and there was nothing more the surgeons or doctors could do for her. The decison to turn off life support was agreed by the family. That day i will never forget how i broke down and wishing it was myself in that position and not her.

Aneisha sweetheart where ever you i know your in peace and no longer suffering but i miss you everyday and thanks for being a great friend. You was always the strongest and positive one and i hope someday we will see each other again. Love you babes...R.I.P

Not so good news... :(

As you all know that i have been waiting for further surgery to repair my hernia, wound muscle closure and scar revision and i was aware that it was risky operation because of my past medical history but i never knew how high the risks where and the likelihood of them happening unti last Thursdaay when i went to clinic.

I went in all prepared with a list of my issues and questions in regards to the surgery and boy was i not prepared for the answers i got. I saw one of the consultant surgeons who did my transplant and he was very nice and sensitive in the way he told me and when he saw my reaction of fear and dissapointment i could tell that he was very emotional and was even holding back the tears as i was doing too.

These are the answers he gave me:
- it's almost definate or a very high risk that they may perforate another organ or even more during the surgery which will put me back into a critical condition
- a high chance that my recovery time and hospital stay will be very long
- if they perforate another organ(s), i may not make a full recovery or may not survive.
- if i don' have the surgery my quality of life will gradually go down again and may have to resign from my job and not be able to pusrsue my nursing career.
- Long term painkillers will eventually destroy my liver and will result in a third transplant where the chances of me surviving is probably about 10%
- will have to live with hernia and pain and my scar which is for those of you who have seen it is so ugly.
- there is a risk of the hernia blocking my intestines

So as you can see i don't have much choice, either way i go i will eventually need some sort of intervention and if i dont do it know i'm just prolonging the inevitable and the suffering with the pain so i see the best option is to go ahead now, whilst i'm more fit, LFT's are all stable and am stilll mobile so i will have a better chance of recovering after. Although the thought of anything going wrong scares me and i don't know if i have any fight left in me.

Any thoughts???

Bye Kathleen - R.I.P

Thursday (6th Oct) was a very sad and emotional day for the Liver Unit as it was the day we bidded our final farewell to our friend Kathleen Mealy who died tragically a few weeks ago in a car crash. Sadly i didn't make it to the funeral as i had planned as i woke uo in severe pain and could not find my painkillers. However i managed to make it to my clinic appointment later in the day and was told that it was a beautiful service and there wasn't an empty pew or dry eye in the church which goes to show how loved and popular Kathleen was.

4 Years today!

Today marks the 4th year of my second transplant. 4 years ago through the kindness and unselfishness of one family's decision to donate their loved ones organs i was given the gift of life for the second time. After 7 months on the priority waiting list and little hope of survival that gift gave me and my family a glimmer of hope that i may survive. It was a long and difficult surgery which went on for 16 hours.

Two weeks after my transplant i was told the bad news that my main artery was blocked and that my new liver was being deprived of oxygen and blood therefore it was not functioning so my only chance was to have another transplant, which came as such a blow to me that i just wanted to give up as i didn't have the strength to go through it all again. However i couldn't do that to my mum and i saw the distraught and sadness in her face so i agreed to be listed again. Fortunately, 3 weeks later i went for a scan and miraculously my liver looked healthy again and somehow it was no longer being deprived of the blood and oxygen therefore the doctors decided to take me of the list for a while.

However, they thought i would not make it to a year without the need of another transplant but here i am today 4 years on and despite all the complications i've had post transplant i live to the tale.

Another admission & sad news :(

Here i am again, in a hospital bed as a patient and unfortunately it's not for my surgery yet. As usual my body just couldn't wait until then and obviously wanted to come in sooner. However fortunately for me it's not serious, just a case of another infection od and the good thing is that my LFT's are good. Hoping and fingers crossed that i can go home tomorrow all being well.

Sad news shattered my day as i found out that a member of staff in the liver unit had passed away over the weekend in a tragic car accident. Her death came as a great shock to the whole liver unit as she was a lovely and well respected member of the team who has been in service for 35 years and was loved by all fellow coleagues and patients. She will be sorely missed by all and liver outpatients will never be the same again without her bubbly personality and warm smile. R.I.P Kathleen.

Prayers for a friend

Daniel, a brave little boy who was born with Biliary Atresia was recently diagnosed with Lukemia and after 2 failed chemo treatments he has only weeks left and his family is left distraught and heart broken.

I am a true believer in miracles and prayers so i ask you all to please keep this special little boy and his family in your prayers that he does not endure much pain and enjoy the rest of his days with his family happily.

Liz, Michael and family sending you all my love and prayers. I can't imagine what you are all going through. May you find the strength to cope with everything.

Thanks Holly!

This post is dedicated to the greatest psychologist ever. Holly, i don't know if you'll ever get to read this but if you d0 i just want to say a massive thanks for all your help, support and guidance. I wouldn't be where i am today if you hadn't come when you did and i often think how different things would have been if you hadn't taken me on.

I know, i was not an easy patient but you gave me back my motivation and drive to get better and sort my life out. I hope that i can make you proud and go on to live my life with all the tools and skills which you have tought me over the past year and a half. It's a scary and daughnting prospect but i know now that i am in a much better place and can get through the tough times thanks to you. I wish all the best in your new job, i hope it brings you happiness and success.


As you all know i have been on an emotional journey this past three and a half years what with all my health issues and personal problems. A year and a half ago i was blessed with such a great psychologist who took me on despite the fact i wasn't a pedeatric or teenager which she specialises in and thanks to her hard work and patience with me i have managed to get back part of my life and learn things about myself i never knew.

As she leaves for a new job i am left to live life on my own using the skills and knowledge that she has thought me and begin a new chapter in my life. I don't know what way it is going to go but i am determined to stay focused and deal with any challenges i may be faced with in the future with a more positive approach.

2010 Brief Update

Wow, it's been a long time! I don't really know where to start as i got lots of thoughts swimming around in my already very confused head. Okay instead of cramming the past few months into one post i think i will break it up as there has been quite a few things going on, some good and some unfortunately not great, but hey that's life!

A New Year, New Beginnings...

This year i have been very fortunate to have been blessed with a lot of good things. In January i started my first job since my second transplant and my first job working for the NHS. I decided it was time i started to get my life back on track despite my current health condition as i was becoming more and more depressed. I now work as a Healthcare Assistant funnily enough at Kings which at first was very strange as i've gone from being a patient to an employee.

Then in March i decided to take the next step into leading an independent life so i finally moved out of home. It was decision that was not made lightly as it was both difficult for me and my mum but more so for my mum who is a constant worrier and at first found it very difficult to let me go.

Also in March i held my first Charity Fundraising event which i managed to organise on my own with the help of a good friend for The Liver Intesive Therapy Unit at Kings.

Well those are the most major things that has happened so far this year and will go into more detail about each in future posts.

The best thing though is that my LFT's have been PERFECT all year so far and no hospital admissions!!!