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
Friday 17 December 2010
Friday 22 October 2010
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?
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?
Thursday 30 September 2010
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!!!
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!!!
Sunday 29 August 2010
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.
Alex chasing Summer outside our rooms (left door Alex & Nicole, right door Stav & I)
Our room-modern and contemporary 
Alex & Nicole's twin room
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.
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..
Tuesday 24 August 2010
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.
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.
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!!!
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..
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!
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!
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