Do I need to slow down? No way!

Gosh, over a year since I've blogged!  Still here!?!

The athletic's season has taken over my summer - and maybe the family's too - but this weekend, sees the end of "track" 2012. I was gently pushed into working towards being a Level 3 timekeeper back in May, and having been "reported" on as a "chief" during a very hot and sunny day in April at the gorgeous track in Eton, where I looked after (!) the timekeepers during the second day of the International Schools Championships, I decided it wasn't such a bad idea.

ATHLETICS

It takes a minimum of two years and six reports. So one down. The other 5 reports (this is when you are literally followed, assessed and a written report made out) have to be:-  1.  show you can read photofinish (tomorrow).  2. Clerk of Course - a very physical role making sure all the correct equipment is in the right place at the right time etc. 3 & 4 - reports on me as a timekeeper and in my county or region is ok (know the rules & regs, keep within .05 error at end of day, with only a few .1+ errors allowed - that is hundreds and tenths of a second).  5.  Be reported on as a timekeeper (as opposed a chief) by an "out of region" chief - from the Midlands or North of England.  Not sure how I'll go about no. 5, but I'll come up with something!

ENDURANCE
Ok. So track finishes, but as of January 2012, I became an Endurance Official too. And Endurance starts as Track finishes... Endurance being road races, cross country and multi terrain. Just a Level 2a right now, and working towards a 2b. For a timekeeper to do this is difficult because you have to gain lots of varying "experiences" - marshaling part of a course, running an event etc etc - and when there aren't many cross country timekeepers, you know that the first job everyone will ask you to do...timekeeping! 

OTHER STUFF...

The first torch bearer, Redhill

Earlier this year I joined a team to marshal the Olympic Torch as it passed through Redhill.  Little N helped too, but it was rather funny because we were put on crowd control where there were no people...  Next week is the "Tour of Britain", and again our local council will be arranging marshals which I have volunteered to do. Wonder what they'll have me doing this time!?

Also this year I helped out at the London 10k which started and finished in The Mall as the Olympic Marathon was to.

Recognise the winner?

 

 

And we enjoyed a picnic on Picadilly to celebrate the Queen's Golden Jubilee.

OLYMPICS
On the Monday before the Olympics started, I was very lucky to be given a ticket to a practice session of the Olympic Opening Ceremony.  WOW! It was just amazing.

The Industrial Revolution

 The NHS and GOSH

Party House!

And then I just HAD to see something, so in the first ballot, Little N and I were lucky enough to get 2 tickets to they Sync Swim.

LISTEN (at King's)
In January 2012, I stepped down as Chair of LISTEN. When I first agreed to take on the role I said I'd do it for a year, but 3 years later and I was still there. I haven't left the committee, but the day to day duties now land on the shoulders of Mr Vaux.  There have been numerous political issues that we've got involved with, mainly the reallocation of liver organs to donors. NHSBT and LAG (Liver Advisory Group) set up, a few years ago, a meeting for liver disease support groups from around the country. LISTEN supports all diseases around the transplant process. I won't bore you with this, but it was exceedingly interesting and very controversial, and for the moment, I think the result is what we want.

I've also continued to do ward visits and mentor patients this year. I think, as someone else mentioned this week, that we get just as much out of talking to such inspirational characters, as they do meeting a "healthy transplantee".  I seem to now be doing a ward visit once a month and mentoring at the group support monthly too, so my visits to King's has reduced a little. The committee meetings we try to fit in with other meetings, so when there is "Group" or a few of us on ward visits. 

This year, as it isn't run every year, was the King's Open Day.  A great day out for kids especially, but lots to learn for the adults too, with all the departments of the hospital having a representation. Lots of activities for kids including being plastered (and yes Little N did just that...at 17), and lots of freebies and games. I took my turn with the other mentors to talk to people about LISTEN. Really great fun!

KIDS
Master A came home from uni for the summer and next week, will finish his summer stint at Chessington World of Adventures, or as my parents remember it, "Chessington Zoo".  Next weekend we (as many parents) will be taking him back to uni, where this time he is sharing a house off campus, with 2 lads from Dartford.  I think they'll have a ball!

Little N next week starts her A'level year (A2s).  Photography, Englist Lit & Lang, Art & Design (Fashion). She's also got a 2nd interview at New Look, so 2012/13 could be a very different and busy year for her!

SUMMER
Not the season - the dog!  Summer and Harris are still in love.  But now Summer has had all her DNA, hip and eye tests done, we're ready to find a Sire for her, and Harris has had the chop!  Next Spring could bring lots of Summers!!!

 My lovely friend Judy, with my Summer (left) and her Harris (right)

Summer is an enternal joy for all of us.  If I'm out of the house for even an hour, she goes crazy excited when I get home. This is much better than teenage grunts, I can tell you!!  She also goes quite mad when she see's Aunty Steph and Aunty Tracy, who she met the very first week we bought her home - three years ago.  She also rather loves her Aunty Naomi who brings her treats.  But when she sees Harris!  Well, everytime is like all her Christmas's have come at once (and she rather loves her cuddles with Aunty Judy and Uncle Rob...  Oh dear, what do I sound like?

ME
I feel fine. But then I only ever realise I didn't, when I feel fine!  I've had a biopsy and MRCP following erratic blood results this year, but then everything settles on its own with no intervention.  Quite a few steroids, but that's it. So in all, I'd say all is very good.

The title is the hardest thing..

Every blog entry you write you're supposed to give it a title. I'm hopeless at thinking up good ones!

But that aside...

LIVER, LISTEN & KINGS

...I have spent the last two days on various visits at King's, but today was the day for me.

Yesterday was ward visit day and it was great to have company. It was a long afternoon - very rewarding - but just as exhausting. We met people just being put onto the transplant waiting list, people who had recently been transplanted and people who had been on the transplant waiting list for some time. We finally got our photo id cards and progressed with the CRB checks (got one for UKA, need another for NHS).

Today was bloods day. I wanted to find out what I'm to expect with my "funny" bloods, and the long and the short of it is that I need to have a biopsy to get a precise diagnosis. I saw one of the top guys and I really pushed to know more, but unfortunately my current story isn't text book (boom boom)...

DOGGGGG

Had two excellent walks but today I went up Flower Lane near Godstone and walked through the woods with two dog walking friends and their pooches close to Woldingham School. Yes, Mad Dog and I met with her woof love, Harris - and their little bichon frise pal, Charlie.




Short and sweet for today. A good few days. Need a little rest...!!!

I haven't forgotten...

I was reminded today that I haven't updated my blog for a few months, so what has been happening?

HOME

Our house is exam city right now, with GCSEs and A levels at their most stressful. Not helped by a carpenter taking over the whole of our ground floor (it's only a little house) to build our long awaited for cupboards. Yay - storage space at last!!

I think the kids are coping better than I am with the exam stuff. Well you know, "get off facebook", "are you on facebook?", "leave your phone downstairs", "have you eaten", "have you had a drink", "stop playing with the dog and concentrate!!" Actually, I'm not that bad. All I ask from the GCSEs (which are almost finished) is a small period of focused concentration, with breaks, then chill. But if the phone, tv, dog, get in the way.... A level boy is old enough to sort himself out. I won't be at university to check up on him (well that's what he thinks!!)...lol

LISTEN

It's been an amazing year for LISTEN. Our big push to raise the profile of our mentoring services within King's is really paying off, and it's now quite easy to spend around 6 hours each Wednesday at the hospital meeting referals, talking to groups, catching up with the staff and checking out our Lodge accommodation. Fantastic!

The committee meets once a month, but I'm in contact with the members at least every few days or so depending on what is going on.

I have rewritten the LISTEN leaflet which is just going through its final stages of proofing, and there may be some help with the future Newsletters which I hope we can do soon.

FUNDRAISING

I can't take any credit for fundraising this year, but wow, there are some fantastic people out there doing some amazing stuff for LISTEN. Chris, I've spoken about before, is still set to fly his cesna plane from Cape Cod to Cape Horn, some tens of thousands of miles, in Dec 2011-Mar 2012. And Andy Strachan, transplanted only in December, will be running 10k on July 10th. The Ladies of Caterham Rotary raised loads from a dance evening, and a quizz night, also in Caterham, recently raised around £600.

OFFICIATING

My approach to timekeeping has been a lot more relaxed this year. I've done plenty of it, in fact sometimes a little too much, but maybe because I've got a little more experience under my belt I just take each meeting with a calm approach and hope that I'm doing the best I can. For those new to this "sport", the precission of your timekeeping is measured by hundredths of a second with the widest "error" accepted throughout a whole day of races (sometime over 100 races) just 500th of a second. My "errors" this year over a day range from 3.54 (super excellent) to just over 5 (good, but should do better!).

I want to go up to the next grade of officiating but consisently need to keep my errors below 5. All great if the starter signal is good - but that's not always the case...

This weekend is the Surrey Schools Championships. This is a really long day in Kingston. Having competed in local district sports, the top 1-3 in each event, go forward to represent their district. Little N is doing the triple jump for South Surrey.

HEALTH

Interesting at the moment. I feel fine. Tired but absolutely fine. I am waiting for a date for a biopsy to see what my lovely liver is doing as its not totally happy at the moment. No worries. I'm so well looked after and have great support. No worries.

MAD DOG

Well Mad Dog failed her Kennel Club Gold award. Aaaaah. I knew she wasn't ready and she passed everything - except the very last. This was being shut in a stable with the door closed. Oh dear. Howl, cry, bark. She was not happy. Instand FAIL.

Not to give up, we now join the next group training for gold every 2-3 weeks, and hope that she will do it soon. Go Summer!!!

Oh and Summer is very much in love. Meet Harris...

LISTEN today...

I love productive meetings. Today was the monthly LISTEN meeting and the leading topics were mentoring and how we wanted to develop long term. We could certainly do with more hands on board, creative and handyman type people, but I love the team we have and I think our personalities and skills compliament each other well.

The committee are currently trialing mentoring at King's on a regular basis - visiting the wards, liver intensive care and the LISTEN Lodges. As part of developing our skills we each have to attend an Educational session run by the pre transplant co-ordinators when patients are told they are being put on the liver transplant list. Patients and their families attend, and they are talked through the period leading up to that "wished for" telephone call to say a possible match has been found - what happens during the transplant - and a little of after too. I was "Educated" a few weeks ago.

Because of the nature of the job, we are around vulnerable people and we take this very seriously. We are lucky to have our very own "in-house" counsellor (just one of many hats he wears) and he (we know who he is!!) attends our visits with us, so we know that what we are doing and saying is correct. We never give medical advice - ever - and we visit to listen and mentor.

To become a Liver Unit Mentor we attend a days training run by the Specialist Social Worker at King's (I took my training in 2008). From meeting and listening to other support groups at liver units around the UK, it seems that we are the only group to be trained.

But as with any "job", you won't be the best unless you continue your training. So we're going to run possibly two days of workshops with talks given by medical bodies within the liver unit, full mentor training and role play etc.. This is for our current mentors and prospective mentors.

Why do this now? Our main focus for 2011 is to develop our relationship with the liver unit. We want to be in a position to offer our mentors more work than they have had and by being a larger presence in the hospital, the hope is that we will.

After just 4 weeks I think we have already been able to mentor around 400% more than previous 4 weeks. There is a lot more to this, but I won't bore you!!

Back home. Landed with a bump. A £65 dentist bill for the kids and £33 pilates bill...

Otherwise back at the ranch, Stav is in France snowboarding, Little N is beeing a teen, Mad Dog is making me laugh and Big A..taking dads absence to antagonise his sister even more... So a usual week..lol..

Tonight, I've had my pilates fix, Glee fix and watched the 2nd part of Waking the Dead. Now watching the American The Apprentice. A fab night of TV for me!!

I will be visiting the King's Charitable Trust on Thursday which is in Waterloo then having my own blood tests at Denmark Hill.

PRIMA Power

I knew it was about to happen. I knew it would be soon.

But that didn't make me any less suprised when I saw it!!!

That is of course, the PRIMA article. From contact to the newsagent shelves has taken about 6 months, with the photoshoot taken in Reigate Priory Park in December between the two massive snowfalls Surrey experienced. It is so lovely however, to have a natural family picture taken by a professional.

PRIMA - March Edition - Pages 117 and 118 - Out now (until about 2/3/11).

Of course the first thing every one of my family did (me included) was to look at the pictures and see if their hair, face, clothes etc looked ok. What a vain lot. Of course, I'm full of steroids so particularly bloated but hey, gotta get used to it.

The article is entitled "Why I want everyone to carry an organ-donor card", "Donna Barrington-Smith, 41 (I'm 42), a travel writer (well, sort of) from Reigate (Redhill), Surrey, explains how the kindness of a stranger saved her life".

There is, as you would expect, a little artistic licence, but the story is generally how I told it. In fact with the current situation I am ecstatic how it pushes people to consider signing up for a organ donor card. And LISTEN gets a mention too. Fantastic!!

Exciting...

Today I went to King's for a meeting with the King's Charitable Trust Marketing Manager and a fantastic couple who wish to raise lots of money for LISTEN, the fund dedicated to supporting pre and post liver transplant patients and their families.

Firstly I must tell you about Chris and Corrine McLaughlin. And ask that you look at FLIGHT4LIVES. This website will develop as the months lead up to December 2011 when they plan to fly their little Cessna plane from CapeToCape - Cape Cod to Cape Horn.


Chris and Corrine with their Cessna
A dynamic couple, Chris received a liver transplant at King's in April 2010; he was previously a BA Captain flying 747s. Corrine is a BA Purser.



They weren't prepared for what happened to Chris in March and April 2010 as he waivered in and out of conciousness, especially finding out that the severity of his liver disease had also shot his kidneys.

Whilst Chris battled in Liver Intensive Care, Corrine was having to drive from their Surrey/Sussex border home to King's every day. The distance isn't one of the longest that families supporting a liver diseased patient has to travel, but as anyone knows who has had to travel to Denmark Hill SE London from outside the M25, the traffic is hideous and it is a very time consuming journey full of traffic jams and traffic lights. Incredibly stressful.

Luckily, a LISTEN Lodge room became available. In Corrine's own words "The Lodge saved my sanity." She added, "Someone told me I could stay at the Halfway House (the name of past accommodation used by the King's liver unit) and I was a little worried about what I would be walking into, but was also so grateful to be able to stay near to Chris".

And what a suprise she got when she walked into the beautifully decorated LISTEN Lodge (Lower)! She loved the accommodation so much and was so thankful to use such fantastic facilities - and especially as the Lodges are only 2 minutes walk from King's (when you are receiving calls at 6am and odd o'clock, that is sooo important) - that when Chris said he wanted to give something back to King's after his liver transplant, that Corrine insisted that he raise money for LISTEN.

So starts a story...

LISTEN will provide any support they possibly can to Chris and Corrine. And I hope to keep you informed off their progress...

Chris hopes to raise around £50,000 flying over 16,000 nautical miles in a plane that needs refueling every 4 hours and travelling over rainforests, desert etc... Some of the money he raises will also go to liver research and the Nigel Heaton Fund - but their wishes are that LISTEN recieves the highest percentage. WOW! And thank you. And boy, how exciting...

After this I went up to Liver Outpatients to remind them that I wanted them to put together a wish list of what LISTEN could raise funds for, and also did the same on Todd Ward (main liver unit ward. I popped into the the Relatives Room on Todd and was delighted to find that there were 3 plaques in the room including the LISTEN plaque.

Then home. xx

Love kids! Glad mine are older!!

This morning was the second morning in a row that I have officiated at the local sports centre, a five minutes' walk away!

On Tuesday nine junior schools put together teams of around 20 kids aged 9 to 11 to compete in a Sportshall event. Today there were seve schools. The idea is to have fun, make lots of noise (in a positive way - no booing) and enjoy competing in various toned down athletic events.

Their smiles were delightful, but after about 90 minutes I was reaching for the paracetamol!!

Such a shame that the government are withdrawing the funds to an extent that after three years of this event, next year it will be no longer. THat is unless someone leads the helm in encouraging the schools to arrange it themselves!! There is of course, a little more to it than that, as it will be the secondary schools who decide if they spend their funds on the junior schools. Such a shame. Such a shame.

Anyway, on another matter. No call from King's so I'm hoping for happy bloods. I've been incredibly tired over the last 3 weeks, something I've never had to contend with before except in the early days post transplant, but may be it is something I will have to resign myself to for the moment.

On Sunday I took a bump all the way down the stair...stupid mare!! Talking to the dog, carrying a big basket full of dirty washing and descending steep stairs don't go together. All bumps clear now. Stupid mare!

For those with athletics "know", you'll understand when I say that Little N is going to 2nd claim for Sutton and District. This is because RPAC are not part of the Junior League which Sutton is joining this season for the first time. This is athletics for Under 17 and Under 20 only. She will still compete for RPAC outside of this;there was never a moment when we considered her doing otherwise.

Mad Dog had to miss training and her play date with little Delhia the miniture poodle, today as I was at the schools athletics. Also, I did have a laugh to myself when I read what she has to achieve for the Kennel Club Gold Award....now she holds her silver.... NO CHANCE....LOL xx

Friday 28th January 2011

Getting back to this blogging now, and I love to hear your comments too, so please keep contacting me either via the blog or on facebook.

A quiet day today, catching up on work articles and resting.

Took mad dog out and enjoyed joining "the pack"; a group of dog walkers for an hour.

Tomorrow I'll be timekeeping at Lee Valley for the Senior London Games. Doesn't start until 12 but doesn't end till 7pm... long day.

No call from King's so hoping that's because I've got happy bloods. Yay!

I've started watching the newsagents for the March edition of PRIMA magazine. Here are some photos of our photoshoot. With the big steroid head that I have at the moment, it wasn't an enjoyable experience but I know there were some lovely pictures of the family complete with mad dog.

Happy and Sad...Good News and Bad News..

Good news...I had a really interesting day, today.

Bad news...I had to say adieu to a good friend who I will miss (but I hope she will return in 6 months)...

Good news...I went to a very interesting talk at King's given by pharmacy.

Bad news...I've been told I can't run the London Marathon (but I was starting to come to the same decision myself, but it was taken off of me).

Good news...Saw lots of people that I haven't seen for an age..

Sad news...A good friend had a very sad day today. My thoughts are with her and her family xx

Happy news...I am aiming for the London Marathon 2012, with the main goal in the meantime, to stay out of hospital this year and have lots of happy blood...

Bad news...not for me, but two poor consultants at King's who had to listen to me having a bit of a rant about the ongoing discussions regarding national v local transplant list...

Good news...I think I was preaching to the converted..if you get my drift!

On the last Thursday of every month, LISTEN runs a Group Support Meeting for pre and post liver transplant patients at King's. Every second month a hospital professional comes to the meeting to talk, and today was pharmacy. We usually have 3-5 mentors attending (me included) but today we were to say goodbye to Jacomi, the Liver Unit Social Worker, so we were joined by many more - a brillant turn out. Jacomi has been a fantastic support to LISTEN for many years and has become a very cherished friend.

The talk by Pharmacy, bascially (for the interest of any Liver Transplant Patients reading this blog), was to advise us that a number of generic drugs have been introduced recently. There are now generic Tacrolimus and generic Microphenolate. As you would expect, King's are asking that we stick to the drug brands that we are currently on and NOT change to a generic brands. So keep to Tacrolimus Prograf (or Advograf) and Mycophenolate CellCept unless King's advises otherwise. There is a chance that some GPs may prescribe the generic brands as they are cheaper, but the variable between the known brands and the generic brands is too wide to guarantee the generic brands effectiveness. So for now, avoid. The Tacrolimus is a particular concern; the Mycophenolate, I was told by one of the consultants after the talk, we will almost certainly be told we can accept the generic brand..but not yet.

After "Group" was the official opening of the Todd Ward Relatives Room for which LISTEN donated half the funds. Todd is the main liver unit ward at King's and this family room was a dull, dark uninteresting box; now it is in the process of becoming a lovely butterfly. The nurses made lots of fantastic dishes, and I'd have to say there was around 60+ people coming and going to have a look.

From Todd I went to Liver Outpatients and it was lovely. Yes, being in OP was lovely!! lol.. It felt like we were continuing the party as so many patients and mentors had blood tests too.

Met and spent time with others not mentioned. So for me, a very sociable and happy and sad day. But a good day. Always a good day xx

January 2011

Christmas came and went. All very lovely. New Year came and went. Little N and I travelled to Lancs and Cheshire to visit family, so very lovely too.

Now January is nearly over! Where has it gone?

Mad Dog and I passed our Kennel Club Silver Award last week...yey!! She was as good as gold. I think I had the right dog?! Today we had our first training lesson towards the Gold Award. "Now you are Gold" advised Ann Cook our trainer, "The dogs are trained off the lead"!! Yeah, right...lol

Mad Dog VERY happy with this decision. Mad Dog decided she rather liked Gold training! Mad Dog set all the other dogs off and played chase and hide and seek around the training centre. And me? Sorry, I just stand there and laugh.... Bad Mad Dog! Bad Mad Owner!

I have been enjoying a month that I lost being in hospital last year.

I was Chief Timekeeper for the Surrey Cross Country Championships, which was a real challenge and great fun. Helped of course, by the support of two exceedingly good timekeepers with two very brand new ones.

Then I was at Lee Valley as Timekeeper Steward, which is all administrative work and knowing how to keep your cool and react quickly to unplanned situations. I like this sometime more than timekeeping!

This coming weekend I will be timekeeping for the London Games held again at Lee Valley (north London). This will be my first track event since September, so I'm a little nervous - but will be fun!

Last weekend was the British Liver Trust (BLT) Conference held at Walton House near Stratford Upon Avon. A very beautiful setting and it was great to meet some ex-LISTEN committee members, one whom I'd never met, and one who I haven't seen for quite a while. BLT had raised funds to cover the costs of our accommodation and dinner, and a few of the topics were quite controversial.

The NHS want organ donation to be transparent. Apparently it currently isn't. So in doing this they are investigating and discussing a National Transplant list as opposed to the current Unit List. The exception to the rule is the Super Urgent List which is already National but only the top 3 cases are allowed and usually with 48 hours to live. This was the list I was put on.

The major flaw that I see in this new National List for all liver transplants, is that due to the total lack of donors and of course people not signing up for the Donor Organ List, the organs that do become available will go to maybe not quite the sickest but those who will have the best chance of a long life. What's the problem here I bet you ask? Well, personally, and I have been given confirmation of this, it will mean that because of the lack of organs, there will be no re-transplants. A computer will hold all the information and will allocate the organ to the next on the list. No chance for re transplants because whilst you may get another 10+ years of life, on average this will not be so. The other issue is getting the recipient of the organ to the organ (or vice versa) which rather than local London and south, could mean transporting from Scottish islands, NW England etc, where a shorter distance to travel (ie going to your local transplant unit) would mean the organ would have a much better chance of "taking" as the period from harvesting to transplant is tight.

Enough! I'm really on my high horse about this right now and could go on for ever....I won't!!

Running. Have been doing quite a bit but 3 runs in a week equals needing sleep for a week. I am considering deferring my Marathon place until 2012 if that is a possibility. My running pal is in agreement for us both.

Tomorrow is a busy day. Thursday.

I have had a plaque made to take to King's tomorrow:

Todd Ward Relative's Room

Partly funded by

LISTEN At King's

January 2011

So tomorrow is the grand opening of the said ward room which LISTEN donated around £3,000, with the same amount again raised by a gentleman called Wayne Bowden. He is currently training to cycle from London to Brighton and hopes to compete in the Transplant Games which this year will be in Northern Ireland.

SO tomorrow. Group Support will start at 12.45 with a talk by the pharmacy about new drugs available, then the opening, then time for my bloods.

Happy bloods tomorrow please!

It's been a while...

It's been a while... But I'm back again.

You know how builders build for a living, but get the work done at home? or pc engineers - great at their job, but get them to fix the home pc.... Well, I'm a paid blogger...

It's been a busy few months. And fun.

I have been visiting universities over the last few months, and I'm really proud of number 1 son, who, within 2 weeks had received 3 offers, with an interview at no. 4 - and no 5, actually doesn't offer the exact course he wants!! We thought it was going to be really tough because of 2011 being the last intake for "low" university fees, so it has been really exciting.

What we have learned though, is that out of the 4 AS levels you may start with, it is so important to "drop" the right subject. Obvious? Yes! But without going into details about how we got to this, number 2 child and I will start looking at university courses from next year as she starts her ASs. Not so that she makes her life decision at 16, but so that she knows what options there are available and can then start to make an informed decision when she needs to in 2012 (for a 2013 intake into uni-if that's what she would like) !

Summer - wise, as in dog, not season, we've been working towards the Kennel Club Siver award. Ready and willing, it then snowed on the day of the test. So when classes start again in the new year, hopefully we'll get the chance again.

Being chair of LISTEN, the fund of the King's College Hospital Charity dedicated to supporting pre and post liver transplant patients, has been really rewarding. At the beginning of November, I went to Birmingham with Mr W for a day, representing King's and our support group. It was a meeting of liver transplant support groups from all over the country, and various questions were set to us:

How, what, when, should the NHS tell liver transplant (ltx) patients that they may have a high risk donor? More people (the general public) have fatty livers, drink more and have diabetes, so whilst they and their families are magnificent for considering to donate their organs, there are now more risks than ever for the recipient of the organ. DON'T let this comment stop you signing to the organ register if you do have any of the above - life evolves, and there are other organs in your body that can be used... and of course, if you turn unhealthy living to healthy living, your liver (my area of interest!!) can/will regenerate...!

A very contraversial area discussed, and it's not a secret, is to do with acute alcoholic liver disease. This is not to be confused with alcoholic related liver diseases. "Acute" means rapid onset, and acute alcoholic liver failure is a fatal disease most often found in the young who experiment with alcohol, as so many teens do, but their body just cannot handle it and their liver very quickly start to "die" and don't regenerate. THis is NOT older people who have been drinking for years and their liver slowly starts to deteriorate until, because they won't or can't stop drinking - or it's too late when they realise what is happening to them - which are alcoholic liver related diseases.

Well the situation is that currently, if a youth is diagnosed as having acute alcoholic liver disease, they will NOT be transplanted. They face certain death, with the exception of a few very rare cases.

SO the question put to us in Birmingham was, should the NHS run a trial of 20 subjects from possibly 4 different units, offering them a donation having undertaken strict psycological evaluation and following through their after care to ascertain if the NHS should consider transplating people with this disease, if successful, in the future.

What do you think? I had a very strong view on this, put across my feelings..and you will most likely be suprised by my response...

Also for LISTEN we had an amazing offer from GlaxoSmithKline! "One of the world's leading research-based pharmaceutical and healthcare companies – is committed to improving the quality of human life by enabling people to do more, feel better and live longer", GSK encourage their staff to work in the community and pay them for a day that they dedicate to charity work".

So one day, following a number of weeks preparation, 20+ of their UK office staff arrived in Denmark Hill and spent an "Orange Day" decorating the six bedrooms at the LISTEN Lodges - used by the families of liver transplant patients accompanying their loved one who has had to be rushed to King's either because they are so ill they need to be in liver intensive care, or because they are to have a liver transplant.

The GSK staff were beautifully organised - all thanks to Andy - and a team was allocated to each room and they painted the ceilings, walls and woodwork. I had purchased new bedding, some new lamps, and various other bits and peices for the rooms, and when the painting had been done, the Upper Lodge recarpeted, and the furniture put back in place - with the help of Mr & Mrs V - we were then able to "dress" the rooms - and they looked fab! Thanks to Wendy and J too..

Well the reason and inspiration for writing this blog entry today, is that Andy S was put on the transplant list in September. Yesterday, the LISTEN committee and I went to look at the Relatives Room in the liver unit, which we have allocated about £3k (half of cost) to the refurbishment of.

There in front of us, as we entered the ward, was Andy!! Up, walking, and transplanted..

I will NEVER..EVER.. stop being amazed at the speed of recovery from such a serious operation. And will never cease to be amazed by peoples generosity to consider donating their organs after death..and even more so, those who then make that life changing decision when their loved one has died, to give others that one thing we all need and want...life xx

Training...

I think that running the Marathon next year is finally starting to hit me!

I'm so excited to have finally got a ballot place after 3 attempts - but it's only 6 months away...SIX MONTHS!!

Today I walked the dog for an hour, walked one and a half miles to Reigate Priory, ran for about 20 minutes (not all at once), had a coffee with some very supportive friends, walked one and a half miles home via the Pet Shop and bakers...

Walked into Redhill and did some shopping. Walked home. Did "STUFF" in the house.

Drove to Little N's school and walked dog before she came out.

Drove home. Little N had her eye on a jacket she just HAD to have!!

Walked into Redhill. Jacket sleeves too short. Did a little wandering together.

Walked home.

Cooked dinner. Little N's friends staying over.

Wanted dvds. Drove to Reigate - Blockbusters. Morrisons for tomorrow's breakfast. Drove home.

Sorted beds out for Little N's friends.

Now sitting down. Aching a little. May ache a lot tomorrow. But I'm loving getting fit and my recovery between runs (!) is decreasing and the length of time I run for is increasing - so I'm really glad..

I'm reading "How to run a marathon" and I've got a dvd to watch too.

Last weekend I timekept for the Surrey Masters and Vets Cross Country Champs at Richmond Park. The women ran 2 laps of 3km each and the men ran 2 laps of 5km each. How can you not be inspired by watching runners of all different ages, compete?

What inspires you?

London Marathon 2011

I've got a ballot place! Can't believe it! I'm in total shock! My dream come true.

I have been counting down to the day when I receive the Virgin reject jacket (if you donate your entry fee and don't get a place, you get a Virgin jacket). This is the 3rd year I have applied and a special ballot was held for those who have entered and not got a place. When Flora ran the Marathon, if you didn't get a place 4 years in a row you automatically got a place on the 5th year. Now with more people than ever entering the ballot and Virgin running it (don't know the politics), this is the final year that successive rejections mean anything. SO HOW LUCK AM I?

Not only that, but my "old" training pal has also got a ballot place, so we can support each other through training.

I am hopeful that I will get the support from the medics at King's - but realistically I may have a little battle I suppose, as we're getting my AIH into remission and I'm back into the B&B King's at the end of October to have my stent out (not to be replaced). But everything is looking good and I am incredibly hopeful that all should go well.

So do you know of anyone else who has got a place?

Watch this space for more updates on my training (oh dear, not more things to bore you with, you say!!)..

Running Number 1736 at the ready!!!

Bath 'n' Wales

Sunday 22 August 2010

Spending the day at the Transplant Games wasn't the end of my Sunday (22 August 2010) - oh no!

Having said goodbye to Dad and Sue, who had come down from Cheshire to Somerset, we jumped in the car and left Bath, for four days in Wales!

The last time we, as a family, holidayed in Wales, the kids were around 5 and 7, and we camped near Fishguard. A few years older, and having already camped this summer, we chose a beautiful five star Welsh Bed & Breakfast located in the countryside between St David's (UK's smallest city) and Fishguard, Pembrokshire.

The B&B is called Yr Hafan, Park Y West and is really beautiful. Set in 20 acres of rolling countryside, we could open the blinds in the morning and look out towards the sea. The owners, were really friendly, helpful but not intrusive, and together with Miss Summer, we had a fabulous four days.

Yr Hafan (side view)

Views from our room

Alex chasing Summer outside our rooms (left door Alex & Nicole, right door Stav & I)Our room-modern and contemporary Alex & Nicole's twin room

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.