British Transplant Games 2010 - Sunday

Early morning - no time for breakfast! Off to the University of Bath for a day of athletics - the British Transplant Games.




The weather forcast was rain and rain...but WOW....it was sunny!!



Earlier this year the Bath Chronicle published an article about me and the family, particularly the link between athletics officiating and being a transplantee. So today was my turn to show what I was made of, and be one of the timekeepers.


What makes this event - the Transplant Games - so very special, is the mixture of ages and abilities. There are some very competitive and competent athletes, and there are so many more fun loving, have a go, fabulous transplantees - from walking age to "150"!!

The two pictures above show a member of the King's Transplant Team (in the lead).

The children's hospital teams were simply, a delight. These gorgeous little children from Papworth, King's, Great Ormond Street, Guys, Bristol Royal, Plymouth, Edinburgh - and so many other wonderful life saving units - were just inspirational.

Pudsey Bear is always a part of the Games, and the little ones just swarmed round him/her!! On the Saturday I met a family from Kingston. I asked who had had the transplant because they all looked so well, and the little girl aged about 4 or 5 said she had. She had needed a kidney but would not have lived had she had to wait on the donor list. She was however very lucky. Both her parents were compatible - and her dad donated one of his kidney's to his daughter. How lovely is that?

Have you ever been somewhere where all you have done is smile all day? Because that is exactly what I did. Just watching everyone trying so hard; marvelling at some of the speeds; and just loving the smiles on everyones faces.

There were only 3 timekeepers including me, but the atmosphere was very relaxed and fun. The longest track race was just 1500m but the morning was very intense with race after race of sprint heats and 800m.

There were even 20m sprints for the under 5s. The picture below is the crowd of people allowed on the track to encourage these little athletes. One little girl ran in a wheeled frame, others with feeder tubes in - can you imagine the cheers??

The day of athletics finished with relay finals of which the King's Team had only managed to qualify into - but they did brilliantly and won Silver. Well done King's - all of you..

Next Stop Bath - British Transplant Games 2010 - Saturday

I'll come back to the Reunion soon - next stop Bath!!

Earlier this year, I was honoured to be featured in the Bath Chronicle. An article which linked transplantation with the sporting world; one of many similar articles published this year in the lead up to the British Transplant Games.

The city of Bath has hosted the Games a few times I am told, and I was invited to officiate as a timekeeper this year for the athletics.

What with Little N in Turkey Jul/Aug, and the Transplant Reunion, it has been akward this summer to fit in a family holiday - and of course, we can't forget our own waggy tailed Summer (our first dog and she is now only 13 months old). So it made sense to try and combine one of the events to a break away.

So on Friday my father and Sue headed south to (near) Bath to my Auntie and Uncle's home, and Little N and I headed to a hotel in Tormarton just north of the city and the other side of the M4 (ever tried booking a pet/family friendly accommodation at last minute in peak summer??!!)..



The Best Western Compass Inn, Tormarton












On Friday night we met up and dined in Chipping Sodbury, a very pretty town on the edge of the Cotswolds (lovely evening.

Saturday became my first ever visit to Bath. I can't believe I've never managed to visit before!? Little N & I hit the shops - of course, first stop Jack Wills and later met with Dad & Sue, and my Auntie (Denise).

The Donor Bus was in central Bath, and Little N wanted to sign up onto the Donor Register. Dad needed to update his card from the one he had help since the '80s to online registration (which everyone should do). Little N had wanted to sign up for years, but I wanted just as much, for her to make the move by herself. I left her to fill out the paperwork with Dad, whilst as a VIP (now that doesn't happen often!!) I signed a special book on the bus (and yes I do hold a donor card).





The Donor Bus pictured with supporters of the Donor Run







Stav, Alex and Summer arrived at Bath Spa Station early in the afternoon (easy journey from home via Reading), and we went our own way until the evening when we met up in Bath for the DONOR RUN.

Stav & I, Alex & Nicole, Dad, Sue & Denise all signed up to walk the 3k Fun Run together. Until Little N decided it was too easy and wanted to run the 5k with Stav. This event also incorporated the Transplant Games Mini Marathon (3 or 5k).





And of course, we couldn't miss someone else out...!!









Sue, Little N, Denise




















Sue, Stav, Little N














The "race" had to be delayed by 15 mins due to the number of late entrants so an extended warm up took place (I think everyone there will agree with "extended" being the operative word..)..





Sssssttttrreeeetttccchhhhhhh....

















Little N and Stav in group warm up. Dad (648) pictured behind (sunglasses, white hair!)...














Spotted taking sneaky photos....









Just as the race was starting, I spotted two familiar faces from home. Thank you Martin and Sheila for coming to say hello - and well done Martin for winning the siver medal in the Badminton. Fantastic!

Well, then the heavens just opened!! It rained and rained (hence no more photos) - but it was quite warm, so quite nice actually!

Thank you Stav, Little N, Alex, Summer, Dad, Sue and Denise for joining me (Denise is very good at getting people to sign up for the Donor register too..) and also to my cousin Sally, husband Brook and their 3 kiddies for coming along to support us too! It meant a lot.

East meets West...

After my last blog entry I was discharged from King's the following day - so an EXCELLENT recovery! (and my freezer is full of ice lollies - got the taste!!)...

The steroids came down to 20mg, then, more recently to 15mg and in 2 weeks time, I will be on 12.5mg. The magic number is 10 and under, when the puffa fish face and body should start to calm down. May be a month or 2 away, but it's good to aim for, and my blood results are showing that the drugs are controlling the AIH (autoimmune disease).

On a happier note, the kid's have both finished school and college. Little N did work experience for a few days at a kiddies nursery which she found was hard work trying to keep them entertained all the time. But she's going back at the end of the holidays to do another few days - best contraception ever!!! Little N also went to Turkey for a few weeks and had a truely wonderful time with her friend D and her parents. A HUGE thank you to them all..xx

I have been timkeeping, of course! I was at Copthall for the Southern Multi Event Championships, and at Horsham for a Sussex League. Also Reigate Priory had their Summer 10k (just before last blog) and then there was the Gatton 10k at the end of July.

HOWEVER, the last 2-3 weeks have been spent with my head down! Head down writing the LISTEN Newsletter and the last few amends for the LISTEN leaflet.

I did the full production of the 8 page Newsletter using a Serif programme (quite basic) and I was grabbing pictures off facebook and trawling through my computer in my "picture library"!! I had been collecting leads to articles most of this year with the hope that the Newsletter would come out earlier, but with my handful of trips into King's, this really wasn't feasible. So the deadline was yesterday - the KING'S TRANSPLANT REUNION celebrating 21 years of liver transplants at King's College Hospital. There are two life liver transplant stories of the lovely Maureen, and my own personal mentor, Sue; there's a book review - "Wearing Purple" by Moyra Evan's who's husband Paul had a transplant at King's - there's an article written by one of my consultants and an interview with the Social Worker - a bit about our new website listenatkings.org and about what we've all been doing at LISTEN - and more!

I'm very pleased with the final product and can now start thinking about the next issue! And it was fabulous picking up 1,000 copies from the printers... (if anyone has any ideas for the next issue - send a message through this blog).

It was also exciting to see the first ever LISTEN leaflet. Months of writing and rewriting the copy, getting it authorised; then deciding it didn't look the best it could - then passing over to my graphic design friend Andrew (drivecreative.co.uk) - and watching the amazing transformation he performed! WOW...

All this does make me miss brochure production, which I did for a number of years....

On Saturday, Stav and I met up with Paul and Pam from Plymouth (the WEST). It was so lovely to meet the couple who I've been friends with on Facebook for the last year, following an article I put in the last LISTEN Newsletter - Paul's story of transplant. We had a wonderful afternoon walking through Borough Market, drinking coffee, and strolling along the South Bank (they're from the west- we're from the east - sort of...).

Yesterday was the Anniversary of 21 years of Liver Transplants at King's College Hospital - and the Transplant Reunion. I'm going to write a separate blog later with lots of pictures I took. But just to say - it was an amazing day..

School's nearly over...

I can't believe it's been nearly a month since I updated this blog, so in BRIEF, I will tell you what I have been up to!!

TIMEKEEPING

In the last month I have officiated at the following athletic tracks/events:-
Wimbledon Park, Kingsmeadow (Surrey Schools), Crystal Palace (was SEAA TK Steward), Sutton (a private girl's schools league), Walton, Crawley, Walton (again), Crystal Palace (as a tk at London Youth Games)...and Reigate Priory Park (RPAC Summer 10k). And I even had a few weekends off. I think my total events for this summer is around 25-30, and coming up is the Gatton 10k, SEAA at Copthall, Woking Open, possibly Crawley again but it's Bank Holiday weekend (!), and Epsom/Ewell.

LISTEN

The LISTEN committee has met up as a group at least twice in the last month as we had our SUMMER BALL, and lots of other times within the period predominantely to progress with our brand new website http://www.listenatkings.org/

The LISTEN Summer Ball took place on Saturday 26 June and I believe we took over £6000 gross. It was a beautiful evening; warm and balmy! It was held at the Bank of England Sports Ground in Roehampton which is near Richmond Park, and when we arrived champagne was served on the grass terrace which overlooks the cricket pitch (game still in progress).

There were 2 very good speeches of the 4, given by Prof Nigel Heaton and by the mother of one of the liver transplantees who got to use the LISTEN Lodge when her daughter was struck down by acute liver failure in Northern Ireland, and like me, only had hours to live. Eileen, the mother, explained what had happened to her family and how wonderful the staff at King's were/ are (hear, hear!) and how the Lodge had been a godsend. They had come over from NI just for the Ball! I wish I could thank every single person who came - it was a lovely night and the LISTEN team worked really hard - THANK YOU XXX

KINGS & LIVER


My daily little life savers!






Boxes and boxes..





I'm writing this updated blog from my bed on Todd Ward at King's College Hospital.

I last had blood tests on 10 June and my main liver enzymes were coming into the normal range (having been diagnosed with a repeat of AutoImmune Hepatitis in May), so my steroids were reduced from 30mg to 25mg for the next 2 weeks, then to 20mg, which has now been about 3 weeks I think. My hair stopped falling out, it seems, as the liver enzymes dropped and 5 weeks later, I can report that it is starting to grow back. I've said time and time again that I am lucky that I have so much hair so people that don't know me well or don't see me often won't notice the difference. It was hard for me though - and I am relieved that it was just the thickness that suffered and that I have no bald patches.

Moon face, hump and weight gain - I DO look a bit like a cartoon character right now (I have a funny picture that I will load so you can see - also hard to share).

BUT nothing hurts. I am well. I AM! Really! Since the steroids came down to 20mg, I've been tired but expect my body is just working a little harder to sort itself out...

OTHER STUFF

Well, I've spent an evening learning how to use the http://www.rpac.org.uk/ website (regarding loading results etc), have had a number of web meetings with Peter about http://www.listenatkings.org/ including spending the afternoon in a pub in Smallfields (where I'll be next Tuesday), I've met up with Emma who I used to work with at Lowcostholidays.com and who now has her own HR company.

My family welcomed Baby Kyla Frances McKenzie into the world (born 5th July 2010), spent last weekend in Lancashire for my birthday and had a super meal in Lytham on the Saturday (1oth) night - hell journey there and back though!




Nanny (my mum) and Kyla










Kyla...









My new baby cousin says Little N









My new big cousin says Kyla...













Middle Big sister Shannon, with tiny little sister Kyla and their cousin, Little N!







Stav and I went to the Biggin Hill Air Show on the day after the LISTEN Summer Ball (pictures coming) in June, and this week I met up with two friends from my first secondary school, Tudor Grange in Solihull, West Midlands.

Facebook was how we got in contact. I have known Sally Ann possibly since I was 7/8, although I think our friendship really started in the 3rd or 4th year of juniors (Greswold) and then onto the first three years at Tudor Grange Secondary School before I moved to Northampton. Margaret, I met at Tudor Grange and whilst I met Sally Ann earlier this year, I actually hadn't seen Margaret for nearly 30 years (saying it makes me feel soooo old).. I drove up to Warwick and the three of us met up together with M's 3 - nearly 4 year old, gorgeous daughter Myra. Anyone with young kids - take them for a kids meal at Pizza Express; the five course meal with babychino is superb! It was fantastic to see them all, and I know we'll keep in touch!

Other than this, I've been writing travel blog, meeting Greg and Stewart for coffees, driving Little N to all sorts of places but mainly jumps training at Sutton, drinking coffee at Sutton with athletes mums, and occasionally actually seeing Stav LOL!

Joys of Spring...and Summer

Guess where I was today?




Back after a week, by popular demand...







But it was just a short visit.




Today was a rush. "Can I have a packed lunch please?" says son as he starts to walk out the front door... Drop daughter at school early. District Sports Day all day at K2, Crawley (daughter won Intermediate high jump 1.53m and 2nd in triple jump 9.23m). Walk Mad Dog. Dog is mad. Two people on two occasions look at Summer and say "The joys of Spring"! (mad bounding, jumping fluffy rug... Drive home. Write for work. Nice chat with neighbour - on phone (how lazy am I?). Call from a coach at K2 - can't answer question as not an official event (sorry). Race out of house. Walk dog. Need train ticket. Walk dog to station - then to park next door. 15 minutes to get home, change, wash hair and leave again. Get home with 5 mins to spare. Back to station. Dirty hair. Train arrives as get to platform (phew)! On train. Where can I get Kendal Mint Cake? Need for tomorrow (Little N on Duke of Edinburgh trial hike over night for Bronze level). Use phone and Google. Arrive Victoria. Try to find shop. Can't. Back to station. Sit down on train to Denmark Hill. Train pulls away. Phew!

Meet Mark Hazlewood the Marketing Manager at the King's College Hospital Charity. Go over brochure LISTEN wants to produce. Very positive meeting. Make a few amends. Nearly time for sign off. Look at LISTEN SUMMER BALL poster. Make a few amends. Nearly there! Time running out...

Meeting over. Head to Liver Out Patients. Blood pressure, good. Weight, not so good (steroids man!!)..

See the lovely Dr S (all the consultants are lovely), who was the Registrar who looked after me when I was ill in 2006. He who said I would need a new liver and was to be put on the Super Urgent Transplant List on Boxing Day 06. Dr S has also been my main consultant since I became jaundiced in March this year and he performed the procedure to replace January's bile duct stent.

I love looking at the "numbers" of my blood work. Results from last week; bilirubin down (nearly normal, which means I'm white again). AST (main liver enzyme test) down to 99 from nearly 300 (when I'm normal it's about 27). GGT over 1,000 but "not a good indicator". So I think very positive that the steroids are drawing down the liver inflamation, and I may get a call tomorrow when todays results are out, should the figures keep dropping, to say I can reduce them from 40mg to 30mg.

Whilst waiting for the phlebotomists (lovely Draculas), I met a chap who is coming up to a year post transplant and amongst other things, we put the world to rights about how high level steroids just make you want to eat and eat and eat. It was good for me to have this conversation with someone removed from my immediate life, and bless him, it made me feel a little more human!!

Leave Out Patients. Quick walk to station. Wait 15 mins. Google this Kendal Mint Cake Shop!! Where is it? Out at Victoria. Find shop. Is inside of Student Travel Shop!! Buy 2 bars of Choc covered mint. Buy pair of walking socks, clip for outside of bag to attach mug, plastic wallet. Back to Victoria. Train about to leave. Run and jump on. Phew! "Kids -sorry I can't face cooking. One of you walk dog. One meet me. It's MacDonalds tonight". No complaints.

Sainsburys (glad staff getting a bonus). Matches (to light camp stove). MacDonalds (I really don't like their food). Help from Little N. Home. Phew!

Eat. Mad dog goes for a walk. Son goes too. Time to pack Duke of Edinburgh bag with Little N.

It's nearly 11pm. Just finished. We started packing yesterday and preparing a week ago.

The D of E Fashion Parade by Little N




Night!

The Week so far - King's

I was admitted to King's on Monday. I knew it was coming and I had hoped it wouldn't be at the weekend as it was Little N's birthday and I was looking forward to marshalling the start of the London Marathon again. So I was quite ready for the call on Monday to say can you come in now?

I had known for a week that my blood results were particularly high - AST, ALP, GGT etc and further investigation was necessary. On Tuesday I had a rather uncomfortable Liver Biopsy, and on Wednesday, a CT scan.

Following the biopsy, 3 years and 4 months after my Super Urgent Liver Transplant, I was told that the disease that had originally most likely destroyed my liver, was back. Autoimmune Hepatitis (AIH) to be exact. The CT showed that there was nothing more austere to worry about and that the stent I have temporarily in my bile duct, was correctly positioned and looked to be working well.

My initial reaction to finding out that the AIH was back, was that of complete shock, and I could only speak to some of my immediate family whilst I came to terms with what could possibly be the outcome. I NEEDED to be strong - I didn't want to weaken - so many other people have so much more to be concerned about than me - how dare I!!?!

But with a night to sleep on this information and a night to write down endless questions that the doctors answered the next day, I now know that all is not sad or bad! My life expectancy will be no different to a normal transplantee (70ish% at 5 years) and the disease should easily go into remission - hence a rather high course of steroids to get the hepatitis (translated means "swollen liver") to calm down my gifted organ!! And close monitoring I expect...

Stav and Summer came up to Denmark Hill to meet me on the train on Thursday and I was discharged. Prior to one of our Group Mentoring Sessions, two of my lovely transplantee friends came to visit - and I met another at Victoria Station!

So life goes on - and it is good! I will have weekly visits to King's for blood tests and a Consultant appointment (often you see Registrars etc) - and I can already feel that my energy levels are rising! In fact it is only now that I realise how tired I got over the last few weeks!!

My hair continues to fall out. But I still know it will stop. Today, Sunday, my arm has mysteriously brusied - but I'm sure I must of knocked it without realising. These are nothing. I can still go to pilates, energetically walk the dog and just spent the whole weekend on the Time Keeping stand. xxx

New At This!

How scary! New blog! Follow me through my journey of life, the universe and everything!!

Until November 2006 I lived a happy existence of being a mum of two, partner of one - happy - contented..and most of all...healthy...

Then I turned yellow... My running friend S spotted it first, but I laughed and off we went, jogging round Reigate Priory Park like every other Saturday. Sunday, I was at A&E in East Surrey, whipped through at top speed; canulated, admitted.

Ten days later I was transferred by ambulance to King's College Hospital, Denmark Hill, SE London - the number one liver transplant unit in Europe. Within a week I was diagnosed with possible Autoimmune Hepatitis - or in English, a swollen liver caused by an autoimmune disease. Basically my immune system had ceased to recognise my liver as being an active, functioning organ and had started attacking it so violently, that on December 26th - Boxing Day - I was put on the Super Urgent Liver Transplant List. Later I found out that this meant I had up to 3 days to live.

I was lucky - so very lucky! A family had been loving and thoughtful enough to have discussed organ donation on their death - and if it wasn't for them, I wouldn't be here. In the early hours of 27th December, I was given the greatest gift I could possibly receive that Christmas - a new liver.

This blog is about how life changes - how my life has changed - how such sadness can be turned around into happiness and total positivity.

Sadly, this week I was diagnosed once again with Autoimmune Hepatitis (3 years post transplant) - but it has been caught early and with the wonderful support of King's, there is no reason why I should not continue my life as I have been since 2006...