Still waiting...

Yes i'm still awaiting my surgery and the pain is becoming increasingly unbearable at times plus the fatigue is very distressing. All i seem to be doing these days in between work is staying home in bed as i'm always feeling both physically and mentally drained.

Over a month ago i was admitted again for a week via A&E. This time i was on duty at work when i suddenly collapsed and started vomitting so the porters who found me rushed me to A&E where they got me into resus as my vital signs where not good. When i started to come round and stop vomitting i was moved to majors and was eventually brought up to the ward at about 2am the next morning. I was discharged a week later but they couldn't find out what had caused my episode.

Anyway, at my last clinic appointment last week one of the other surgeons suggested that if Prof Heaton agrees that instead of waiting on the elective list for so long they could do my surgery in the Liver theatre when there is no transplants but in that case they would need to get me in soon but not necessarily do the surgery that day or the next. I would have to wait in hospital until the theatre is free and when Prof Heaton is on duty. I haven't heard anything back yet from the surgeon so i don't know whether it is going to happen or not. Also he asked if i was prepared for another long stay post surgery as it is major surgery and recovery and healing will take a while, so i could be looking at another few months as an inpatient.

Loss of a WONDERFUL friend

It's with such a heavy heart and great sadness that i am writing this post. I never thought i'd see the day. On Sunday the 22nd of May at approx 10:30am my dear friend and adopted mother passed away so suddenly. It's been a tough few weeks coming to terms and accepting it and we say our final goodbyes on Thursday at her cremation.

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.