Wednesday 4 November 2009

Health Update...

Well it's been a while since i did a proper update. This year has flown by and has been a emotional rollercoaster. I don't understand how i got to this state. Fortunately i have been blessed again with such a great team of support. Holly, my therapist has been a godsend, Abid, my consultant and Jo,one of the transplant co-ordinators have both been very supportive and understanding. Although my liver numbers and health has been stable throughout the year except for the minor hiccup earlier in the summer i'm still struggling with my feelings and the change in lifestyle.

Since i was discharged in July the pain had stopped and i was feeling great health and energy wise as it is the first time in 3 years that i have actually been pain free and not having to take painkillers everyday felt so good. However, the past month the pain has suddenly come back but they don't know what is causing it again as my bloods are normal and x-ray was okay although it did show that i was very constipated and bunged up which could be the reason.

Holly, if you ever read this oneday i hope you know that i am so grateful for EVERYTHING. Like i've always said you're the BEST therapist i've ever had. If it weren't for you i think i would be in the nut house by now.

Abid and Jo, thanks for your continued support. It's very much appreciatted and i know that with your help i can get through all this.

At present i'm so thankful that all my tests are NORMAL and it's been a good year in terms of not being an inpatient. I stilll have the usual symptoms of itching, pain, fatigue and my osteoatheritis but i guess those things will never really go away.Hoping for many more healthy years ahead.

Friday 21 August 2009

Little hiccup

Well my good run of staying out of hospital came to an end last month, but hey i made it 8 whole months which is a record for me. The pain was becoming unbearable was taking over my life again making me feel depressed which drove me to become an emotional wreck.

One day i was in so much pain that i could not move at all and i was home alone so i had to call mum at work to come home as it was so bad. I called Kings and was told to come to clinic the next day before my CT scan and as soon as they saw me in clinic i was admitted on the ward. The next few days consisted of invasive procedures and the findings where quite shocking.

The CT showed i had a anurysm in my splenic artery and the endoscopy showed that i had some little ulcers, inflammation of the duodenem and constipation. They began making plans to block the anurysm as they didn't want to do surgey as it would be too risky and they put me on alot of laxitives to help with the constipation and a course of antibiotics for the inflammation. However me being me something always has to go wrong. After my angiogram i developed a hematoma on my groin where they went in and then the consultant decided not to do the embolization procedure (block the anurysm) as it is in a very akward place which they cant get to without open surgery and they are so against doing any surgery as the chances of perforating or damaging something else during the surgery is very high and it will set me back even more and i may end up needing a splenectomy. Therefore they decided to leave it and just keep an eye on it and if it ruptures then they will have to deal with it as an emergency.

The good thing that came out of my hospital stay is that they found the inflammation which was the cause of the majority of my pain and for the past few days i have been somewhat pain free which is great.

Monday 6 July 2009

Kings Open Day - 04/07/09

It was my first open day that i attended as an outpatient and actually being involved in the day. Unfortunately whn i got to Kings my headache and nausea kicked in and typical me forgot my meds at home. It was getting worst that not even fresh air or water was heping so i went up to Todd ward and thankfully they gave me some anti sickness and paracetamol which eventually kicked in a bit.

Apart from feeling off i did still enjoy the day speaking to people, seeing the staff with their families and their kids who all seeemed to enjoy themselves taking part in the activities. Also thanks to Sarah and Alfie who i spent most of the day with. I probably wasn't the best company but i appreciated their company together with Tanja and Gill. Am already looking forward to next year when i hope to do the abseil this time.

LISTEN Display & Stall



Linda, Me, Karen & Wendy



Karen, Me & Tony



Me & Dr. Wayel



Alfie



Me & Sarah

Saturday 4 July 2009

Life's Blessings

I know i seem to complain and feel down about my life often as it's very hard to stay positive but i do thank God everyday for all the blessings in my life. I will be eternally grateful to both my donors and their families for their wonderfull gift as well as for all the friendships i've made throughout my journey. I often feel so lucky to have met such wonderful people and found alot of love and support.

Hospitals are suppose to be a place which people fear the most but for me it's like coming home to family and friends everytime i go to Kings. I couldn't have asked for a better team to have look after me and plus all the other people i have met along the way such as patients, staff and families.

I just want to express my heartfelt thanks to some very important people who have touched my life in a significant way and has supported and loved me from the day i met them.

First of all my 2 Todd Ward Mummy's Linda and Emily, you both have been such a pillar of strenght to me, you're aways there when i'm down and there through the happy times too. I love you guys so much.

Carl, Eva, Joy & Louise, just some of the staff on Todd who not only looked after me in hospital but became good friends.

Prof Heaton & Prof Rela, for saving my life numerous times. I'll try and stay out of theatre for this year at least.

Jacomi, Rachel, Louisa R & Holly, thanks for keeping me sane and for being there when i ddn't know who to turn too.

David, you never gave up on me and thanks for visiting even when you had left Kings and for coming to the Ball.

Belinda, i know i was a difficult patient but you've become a great friend and i always look forward to our nights out. Will miss you so much hun when you leave London for good, but hey it will be a reason for me to visit Oz. Love yah babe.

Laura, Kirsty & Sarah T, i love you girls. Thanks for putting up with all my moaning and depression talks and for all the support.

I could go on and on listing people so to everyone who has been a part of my 'Liver Journey' thank you. I could never have got this far without you all. You are all blessings in my life that i will treasure forever.

Wednesday 1 July 2009

Summer Ball 2009 - Bank Of England Pictures

Me & Dr David




Me & Hasan with 'THE MAN - PROF HEATON!'



Ed, Me & Clare



Me & Bee



My 2 Mummys




Me & Hasan



Me & My Mummy Lin

Sunday 28 June 2009

LISTEN Charity Summer Ball (June 27th 2009)

This weekend we held our first LISTEN Charity Summer Ball which turned out to be a lovely evening and we recieved great feedback from the atendees and the hospital staff. It was a glamorous and enjoyable evening, doctors and nurses ditched their uniforms and scrubs for tuxedos an ball gowns, patients out of the hospital gowns and all glammed up. It was a wonderful sight.

Alot of preparation had gone into making the ocassion happen and both myself and Karen (liver tx patient) put alot of time and effort and Karen was a godsend when she decided to come on board and actually ended up doing most of the work. Thank you darling.

Donna, our chaiman at LISTEN delivered a lovely speech and gave thanks to all the hospital staff on behalf of all the transplantees. Thank you Donna, very well done cos i could never get up on stage and do that. Also a huge thank you to the man himself Prof Nigel Heaton (transplant surgeon), your speech touched us all and we are all greatful for your presence and all the hard work you do with your amazing team to save lives. You certainly saved mine numerous times and it was a honor to be in your presence celebrating.

Thank you to all those who attended, contributed and supported us. This is the first of many! We hope that you could all come next year and we'll try to make it bigger and better.

Wednesday 20 May 2009

2009 Update...

Wow, where has the time gone??? Almost half the year has gone by and i haven't updated this blog not even once this year although i always intend to but just never get around to doing it.

Well it's been another crazy year but the GOOD news is that i have been OUT of hospital since November last year...YAY!!! Although that is great news it doesn't mean my life has been easier because it hasn't. It has actually been quite a sad and emotionally challenging year so far. I lost a few friends due to liver disease earlier this year and this past month 5 of my family members sadly passed away, one of which was so tragic that i can't seem to come to terms with it.

The most hardest thing i have had to deal with this year is fighting against my depression. I have been having counselling sessions since i was discharged last November and i have a few ups and downs and have even come to breaking point so have been put on anti-depressants and recently have been referred to mental health to help control my moods. Also tackling relationships and friendships has proved to be such a challenge.

Healthwise i am doing brilliantly in terms of liver function tests, although the pain and my wound is still a big issue and the pain is still controlling my life and the bad news is that my hernia and wound reconstruction surgery has been postponed until next year as my consultant and surgeon feels that it is too soon to start going back inside and risking damaging something else in the process so they felt more healing time is needed. I can understand where they are coming from but it means yet another year of my life is put on hold and i cannot pursue my nurse training this year which i was really looking forward too as my first step into rebuilding my life again. Therefore in the meantime i have taken up extra voluntary and charity work which i am enjoying.