Goodbye 2012...Welcome 2013!!!

Another year has ended and started but I'm glad to see the end of 2012 as it was definitely one of the worst years of my life. I want to forget all that happened in the last year and start a fresh, hoping and praying that 2013 will be a good one as I have a lot of goals that i want to achieve this year. I am no good at keeping to resolutions so instead I make goals. However the most important thing for me is to stay healthy and stay out of hospital as  I think i broke my previous record in the number of admissions I've had in a year. here's to a happy and healthy year to all my family and friends.

Thank you to everyone who has supported me through the tough times. I am blessed to have such amazing people in my life.

To my donors thank you for the precious gift...R.I.P! To my donor's families may you be comforted by the love of  Almighty God.

H.A.P.P.Y ~ N.E.W ~ Y.E.A.R

2013!!!

Complications

As mentioned in my previous posts and in classic Maribel style I had numerous post op complications. As usual I developed numerous infections and my wound developed MRSA and e-coli like it did when I had my transplant, therefore they had to re-open my wound and leave it open. I then developed sepsis and kidney failure and required invasive intervention within LITU. Things then got worst and I got duodenal ulcer and perforation which required surgery and several months of TPN and being nil by mouth. Finally to top it off I got portal vein thrombosis so am now on daily clexane injections. Also, with all the numerous antibiotics for infections I suffered a few allergic reactions.

Since my discharge in April and apart from the encephalopathy that  i have talked about I have also had  trouble with my breathing. I can't mobilise without becoming breathless. I have a Lung function appointment in the new year as I think it could be asthma as i often find myself wheezing a lot. Also i was tested for diabetes again and am on the cusp of becoming a diabetic which I really don't think I could cope with again. Since my allergic reactions my skin has become very bad so have been referred to a dermatologist specialist to have some patch tests done.

Finally, after such a traumatic year I have become very depressed again and been suffering from severe panic attacks which happens at least 3 times a week and I don't know how to control them. It's so depressing and as well as my insomnia it makes sleeping at night very difficult. The transplant co-coordinators and social worker have been good support and have set up psych sessions for me in the new year as they think i may need my anti-depressants to be reviewed and increased.

So as you can tell it's been quite a rough year to say the least!

 

Encephalopathy

This year aside from all the post surgery complications I have managed to develop more problems, the main one being encephalopathy. I've never really suffered from enceph pre-transplant which is why the doctors are puzzled as to why I all of a sudden it is happening and very often despite my LFT's all being within normal range apart from my ammonia levels which on occasion is raised. The first episode I had was in June, I didn't know what was happening to me because I suddenly became very shaky and couldn't control my limbs or hold anything for a few days. I then became very confused and unconscious. I was taken to my local hospital where I was diagnosed with grade 3 hepatic encephalopathy and the doctors said I got there just in time, any longer and I may have slipped into a coma. I was treated with phosphate enemas and antibiotics and made a rapid recovery. However, over the next few months i kept having episodes and was in hospital every month, sometimes twice in a month. Mum had to call the ambulance almost every time and they would always bring me to my local hospital which is also a Liver transplant centre. However, due to my complicated medical history Kings didn't really want me to be treated anywhere else and the Liver team at my local hospital didn't feel comfortable treating me neither when they read my notes and always tried to get me transferred to Kings and kept telling me to go straight to Kings next time. I tried to explain that the ambulance will not take me all the way the Kings as they have a duty of care to bring people to their nearest hospital and mum doesn't drive so there is no way i could get to Kings A&E. My total hospital admissions this year must be at least 10 and most of them being for encephalopathy and the rest for pain.

My surgeons were getting concerned that the encephalopathy is affecting my quality of life and so  I was referred to the hepatologist consultant who specialises in that area and she so happens to be doing a trial on a new drug which seems to work for some patients, so she decided i would be a perfect candidate to try the drug. Since starting the new drug I haven't had another episode so fortunately for me it seems to be working. As the drug is still be trialed it is not yet licensed so i can't get it from my GP, it's only that one doctor at Kings who can prescribe it, so she has given me 4four months worth and will be reviewed to see if I should continue with it for the long term. I hate the fact that it's another medication to take but if it keeps me out of hospital I guess it's a small price to pay.

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.