Monday, 9 August 2010

Transplant Reunion - 21 Years Celebration, Part I

What a lovely day it was on Sunday!

Every four years, King's College Hospital holds a patient reunion for those who have had a liver transplant at the hospital.

2006 was the last time it was held; the year I went from fighting fit to being on the Super Urgent Liver Transplant List, and with all the love and luck in the world, finished the year with a brand new liver.

So 2010, wasn't just any reunion, but King's celebrating 21 years of liver transplantation at the hospital.

Dulwich College was chosen as the location to hold a massive picnic (don't even start to think if pre prepared food was offered to a huge group of immunosuppressants, and they caught a bug!!) - bring you own (very sensible)!




A massive marque was errected, with a stage and large TV/projection screen, and there were a couple of stands inside, including that of LISTEN and the King's Transplant Games Team.

Outside, the LISTEN team and their wonderful supports; Peter and Karen, Linda and Jeremy, Martin and Sheila, Stav, Nicole and her friend Gemma, Mike - and other's who I apologise for not mentioning (but thank you too) - set up a series of canopies, a tombola stand and the girls (Nicole and Gemma), a kiddies lucky dip.




Thank you everyone who donated to the LISTEN tombola. Nearly £500 was raised through this, the quizz and donations on the day!





Mike, Martin and Stav working hard


LISTEN had produced a brand new NEWSLETTER for the occasion and published a new leaflet, both of which ew hope will be distributed throughout the liver unit very soon.



As well as Mike, Mentors, Maureen and Wendy (pictured) and Chris came with their families.

And there was a MASSIVE HUGE ENORMOUS birthday cake to celebrate the 21 years!







It was cut at the end of the afternoon - delicious!



Inside the marque, Professor Nigel Heaton (left) welcomed everyone...



... and the event was then officially opened by the Deputy Mayor Richard Barnes (pictured left).




There were a number of very interesting speakers including Consultant Dr John O'Grady.


Filmed by Consultant Dr Kosh Agarwal.

It was great that so many people came!











Part II coming soom..







Get the Organ Donation bug!!!

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..

Friday, 16 July 2010

In Kings..July 2010



Am back in King's - but I'm fine!



I have a stent in my bile duct. It's not unusual. Where my new liver was sewn to my "old" body, the join became scar tissue which caused a stricture (slight tightening). This in turn slowed down the flow of bile which if left untreated can cause infections and other nasties!

You can only have a bile duct stent in for about 3 months - some say 2, so having had my first in January, 2nd in March; the next was needed!

So the King's B&B is where I am! LOL... My 4th visit this year (number 3 was for the liver biopsy which diagnosed the reoccurance of AutoImmune Hepatitis).

Under general anesthetic, the procedure is done down your throat with the removal of current stent, push through some dye to check stricture (mine is now widening I am told), and re-stenting. The whole thing with no complications takes about 30 minutes I believe.

So this is where I am today. And it all went really well. I'm being soooo well looked after. The Todd Ward nurses are fantastic (so are Dawson, but on Todd today!! - haven't been to RDL for 3 1/2years, so will give feedback if there...but sure they are fantastic too)...

I was quite uncomfortable when I came round from the anesthetic but that soon wore off. I texted Stav once back in my room, to bring COFFEE (to soothe my throat)..then when he arrived, to take me for ICE LOLLY (to soothe my throat)... LOL

So have now drunk loads of coffee and finishing blog for now, before I go to sleep... Throat still sore, but with cameras and balloons stuck down it, not suprised.....are you?? he he he xx

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!