Update...

It's been one month since i got back from the Philippines. I had a fab time and seeing all my family and friends again after almost 10 years was so nice. Although i had a blast it was also very emotional especially when i had to say my goodbyes because if my surgery don't work then it could be the last time i will see them, therefore i am so thankful to Prof Heaton for allowing me to go as it really means a lot to me to see my family for the last time. However, i am still trying to stay positive and pray that everything will go smooth this time round, but based on my history there are no gaurantees and with this being my last chance of having a 'normal' life i have no choice but to go ahead with it.

After four days of being back i ended up as an inpatient for suspected malaria but thankfully it wasn't and turned out to be just a UTI. I was throuwing up and constantly feeling naseuas therefore my apetite was very poor as i could not tolerate anything without feeling sick. However fortunately for me it wasn't a long stay and i manage to go back to work the following week.

As for my upcoming surgery the waiting list for electives is quite long, therefore it could still be a while yet. Well there goes my plans of going back to uni after the summer gone as there no chance i will be fit enough by then if i haven't gone for surgery yet. I can't believe it has taken this long. I feel like i have been waiting for ages as plans have been going on for over 2 years now which is making me more and more frustrated as i feel like my life is on constant pause until after this surgery and dealing with the pain is becoming increasingly difficult and starting to affect my life in such a significant way in terms of my work and my social life which again has become non-existent. However, i am fortunate to have such a supportive manager and colleagues which does help in such a big way.

Life or Death?

If one could choose to live or die how would one decide? What questions would you ask yourself? What's my life worth? Who will miss me? Whats will my quality of life going to be like? I often ask myself these questions and my answers are always the same. I have achieved nothing, i have no assets, no family or career so my life is worth very little. A few people may miss me but time is a healer when grief strikes and life goes on for those i leave behind. I know that i will never live a long life and if the time i got left will be full of suffering why decide to live? I know that there are millions of people out there more worst of than me but for me i've come to the end of my tether and cannot carry on any longer. My liver disease i can deal with but everything else i feel like i can no longer cope with. The stress, the emotional aches and pains, people not accepting me for what i have become after my surgery. I try so hard to put a brave face and hide all the emotional scars but now i just want to let go as i feel like i'm just a joke to everyone or a person without any feelings. I try my best to please people but it seems like whatever i do, it's never right or enough for some people. Anyway enough of my ranting. I just felt i needed to vent and release a bit of frustration. I promise next post will be a happier one.

Some GOOD NEWS to share...

For a change i thought i'd write something positive here whenever i have the chance to despite how small a deal it may seem, as long as it makes me happy i want to share it with everyone.

Firstly and most importantly i am going to Philippines TODAY for 1 MONTH!!!! YAY!!!
Yesterday at clinic Prof Heaton finally added me to the waiting list for my surgery! YAY again!!!
Finally my liver fuunctions are all PERFECT! YAY for a very happy liver!!!

Finally some answers

Today i had an important meeting with the man himself, Prof Heaton. He finally gave me some reassurance and sees things from my perspective and can tell how important this surgery means to me and for once i was not compared against Aneisha as he realises that i am an individual and deserves the same chances as everyone else.

I was so anxious going into the appointment as i had a lot of questions in my head that i need to be answered but as usual, typical me when i get there i am lost for words and go totally go blank. However, he still managed to answer most of them as he explained what the surgery entails and his views and opnions on what i should do. I think he could see through me and feel how hungry i am for life and that i deserve some sort of normality and pain free life. He also thinks that i would benefit a lot from the surgery if all goes to plan but have to also be prepared for the worstt as it comes with very high risks.

His plan for now is that he wants me to have a barrium swallow procedure to check for any obstructions in my bowels. When he told me that i was more concerened about having that procedure more that the surgery itself because out of all the procedures one can have that is my worst nightmare, last time it took them 2 days to actually get gastro graffin down me. I guess i just have to suck it up and do it somehow without passing out.

Once he has the results from the procedure i need to go back to see him at clinic where we will discuss the surgery in more detail and put a date aside for when he and Parthi can both do the surgery.

The best thing that came out of today was knowing that Prof was on my side and is giving me that chance. I have every faith that i am under the best care.

A New Year! 2011!

We are almost at the end of January and so far the new year hasn't been great. As usual at this time of the year i end up in hospital but this time i refuse to be admitted and just soldiered through my illness. Initially i thought it was swine flu until i started getting all the typical symptoms for cholangitis and my transplant co-ordinator was also convinced it was cholangitis (liver infection). I went to my GP and she started me on a course of ciprofloxacin although i know i really needed ivabs. Thank fully the oral kicked it and worked so as soon as i was feeling better i went back to work as i was getting bored and frustrated. Yesterday was my first day back and so far it is going well apart from the pain which is nothing new.

Tomorrow morning i have the important appointment with the man himself, Prof Heaton as the issues of this surgery has been going on for far too long now and i just need some answers and confirmation from him that i can still go ahead with the surgery before i get to the point were i wont be fit and well enough to have it. I realise it comes with major risks but they are all risks that i have thought about thouroughly and am ready to take and i'm trying to stay positive.

I am feeling very anxious about tomorrows appointment. I just hope he gives me the green light after all this wait. I need my life back and pain to go away.

Heaven has gained another liver angel

It's with a heavy hard that i write another about another big loss. Mallory Smith, a very young, vibrant and brave lady lost her battle after 2 liver transplants and numerous complications passed away on Jan 2th 2011 after doctors suggested that it was best that they discontinue her life support as there isn't anymore they could do for her.

Mallory was such an inspiration to many other fellow patients and anyone who came in touch with her. She fwas a fighter and never gave up until her last breath. Mal we will miss you but at least we know where you are and you're free from pain and suffering.

R.I.P sweet girl.

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.