A Bad Day!

This day last year (14/12/11) i was in a very bad place. It's probably one of the worst days of my life. Everything was going great with my recovery until i developed a high fever in the early hours of the morning so the nurses did the usual protocol of giving me paracetamol. Despite having been given 2 iv doses of paracetamol my fever kept going up and peaked at 42 degrees. I however was feeling so cold so u could imagine how angry i was when they stripped me down with no blankets a fan on full blast and wash down with cold water and ice. i have never been so pissed off with the nurses like i was that night and for the first time i started to swear and scream with no regards about the other patients trying to sleep. After all that, my temp was not getting any lower and i needed more iv access for antibiotics so the whole cannulation process began which again took a good 2 hours at least. They eventually got one in each foot but unfortunately both busted after a few hours and i was getting worst and i was very tachycardic my heart rate went up to 130bpm. My room was slowly filling up with nurses and doctors and then a consultant came down to try and put a central line in my neck but again that was not an easy job and it took her about an hour and a half. At this point i was exhausted and feeling so rough. They then made the decision to transfer me to Liver ITU as i had now developed sepsis but due to no beds i was transferred to the main transplant unit where i spent a few hours before being rushed to theatre to find that i had a duodenal ulcer/leak. After surgery i went to LITU where i got progressively worst and was put on TPN as i developed a fistula.

I didn't get any sleep last night because as i lay in bed i kept remembering that day and because i have been feeling very low recently I have been getting frequent panic attacks and they usually happen when i go to bed as I associate bed with all those days i spent lying in bed in hospital and being ill. I've had many bad days but that day in particular will go down as one of my top worst days of my life. Am hoping and praying i will never be in that situation again.

I finally had my surgery...

Since my last update a lot  has happened in terms of both my health and personal life. I finally had my surgery (incisional hernia repair) on December 6th 2011 after numerous deliberation whether to go ahead and cancellations due to unavoidable circumstances.

Although i was made aware by many surgeons and Professor Heaton that this operation is highly risky and i still wanted to go ahead, however i was  not prepared for what was to come. The first few weeks everything seem to be going really well. Prof was pleased with how the surgery went and my recovery. At this point i was feeling very positive and my consultants were very pleased that they were planning my discharge, it looked like i would be home for Christmas and the New Year.

It was three weeks since my surgery and one night i developed a high fever and ended up in surgery with a duoudenal ulcer (see 'A Bad Day' post). Post op i was put on TPN as i had a fistula and a leak, also my wound developed MRSA and E-coli so was re-opened and has been leftopen to heal and close by secondary intention as anymore surgery is too risky now. The next few months proved to be very challenging as i was in and out of Liver ITU with numerous complications. I went into renal failure which required therapy, then caught numerous infections, portal vein thrombosis and developed allergic reactions to numerous drugs

Eventually, things started to settle down and i was allowed to start eating after four long, challenging months in hospital I was finally discharged on April 5th. My wound was still open and the fistula was very active so every time i ate or drank it would come out via the fistula so i had district nurses come to dress my wound twice a day and went to clinic every Thursdays.

Since my discharge in April I have encountered many more problems and have had numerous emergency admissions which i will explain in other posts.

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!!!