Justgiving Link

Hi everyone,


Hope you are having a good week so far.

If you have a couple of minutes please to read my link (below) about events I'm doing this year to raise funds for LAM, that would be appreciated.

If you are able to donate, the amount will assist research to fund medical trials and drugs to slow down the progression of LAM, until a cure can be found. As LAM is such a rare disease and not widely recognised, there is a shortage of monies being donated.

This is the reason why I am doing this, to help women presently diagnosed with LAM and of the future so that no one suffers to the extremes like I did. Thank you x x

Justgiving Link

Many thanks all

Happy smiles all round x x x

3 weeks!!

Mega quick update, as I have been without my laptop for 3 weeks. The local library has been a blessing - for the "one hour" a day allowance..lol.

Well, the much questioned magazine - is the BOOTS, health & Beauty magazine page 93. Boots are now making their advantage card also a donor card..YAY! It's an article using my story and little photo of me..aww.

3 weeks until my UK transplant games....oooooooo...errrr....Time flying too quick!!

And, can u believe it - today is my 3rd year of my transplant anniversary!! My life was saved 3 years ago - today - WOW! I still can't believe it!

Also, in my local Essex Chronicle this week (page 13) and I will update link soon.

And, I will be doing a LIVE radio interview about 9.10am on Friday 10th for BBC ESSEX :- 103.5 or 95.3 FM or online at bbc.co.uk/essex.

I will also be celebrating my 3rd year transplant tonight with my family and again with some close friends this Saturday at Thorpe Park.

To sad news, about my dearest friend, Marc Prosser died this week. I am so gutted and cut up about this. Marc was going to run with me in my first ever 10 mile marathon this October. Marc had Cystic Fibrosis and his decline was unexpected and extremley rapid. He will be missed by many. I miss ya Marc, and will run in your honour, along with Imi who is also running with me at the Bupa Great South Run.
So..to round up....have a great week everyone. Please do not moan about silly things, and really appreciate your life - take nothing for granted. Thanks x x

Can't beleive I am still breathing with someone else's lungs.

Bye all x x x

Oops Oh so quiet

Where does time fly away too? I realise I have been quiet since my last post in April...so decided to leave a little update...and will write more soon!

Exciting things are happening soon - my 3rd transplant anniversary in July (9th) - and will actually celebrate this on 11th. The British Transplant Games for 5 days in Coventry (end July/beg August).

And soon to be part of the 'Gifts of Life' photographs/project by Sarah Milne...watch this space.

And hopefully something even more compelling for a well known shop in their magazine (which will be all across the UK), for July/August edition. I will say more soon (early July....so be patient until then....hahaha).

Last weekend, I drove to Nottingham for the annual LAM Action meeting - which was great to see existing and welcome new Lammies. Although I would rather no one has this disease....but maybe research is positive now with early diagnosis...better that way and to be able to offer hope and medical trials to slow down the progression of Lam. Instead of 10 years for me - for my diagnosis and suffer horrendously! It is always a positive day and lots learnt, and also simply lovely to be able to chat to other women - not many of us - still a rare illness, and we support each other.

I'm still training hard for the transplant games...then will need continue after them for my 10mile marathon in October. Then, I will need a holiday!!!

I will organise a Just Giving Link soon to detail all my events this year and other elements to assist fundraising for Lam Action.

Going back to sleep now.... as I have a run class followed by long jump coaching in not many hours. And before I sleep again (why I wake up during the night for few hours then fall asleep again...blah..)
And, thanks again to Fran Cliffe who has been helping coach me for sprinting and long jump (I have never had any assistance like this before ever) and really appreciate the time Fran puts in. I am learning heaps...and whether I win or not - I am grateful to feel more "pro" and look forward to the games to put in all my hard work and Fran's coaching tips.


xxx

Cruise Holiday April '09

Woohoo!! Here I am on the ship (Tuesday 14th April) in Palma, after travelling for an overnight stop at a Gatwick Hotel. Then the next day flying into Palma to get a coach to The Island Star cruise. To say I hadn't slept the night before - isn't a lie....I have been so excited about this holiday, and adrenalin running all through me! Even when I touched down in Palma..........just kept going.

My first day was spent on the ship arriving in time to eat some lunch from the buffet. There were 2 restaurants - both buffet based (the other a la carte - which I never used). Oh my goodness..how much food!!!!!! Everything and anything from hot to cold selections..fruit, salads, desserts galore, cheeses, and so much more. Lets just say I ate more than a have done in a lifetime and prob gained a couple of pounds. Oh well, was a holiday and I don't eat like that normally - so was a real treat for me (for that week). I also explored the ship on 12 levels with lifts!!! A casino, shops, swimming pool, spa, beauty area, gym, internet cafe, 8 bars, 1 theatre, nightclub, library, and then all the cabins, and much more.... WOW! What a mini adventure!

There were approx 2,500 passengers and about 550 employees onboard from all nationalities across the globe.

I spent the evening watching a show with the singers/dancers and then onto a welcome party. I rarely drink, but treated myself to two cocktails - Baileys banana colada (a frozen daiquiri) and starting swaying - or was that the ship!!?? lol

My cabin was an inside cabin - and I liked that, as wouldnt want to see the waves by the window! Generally I slept well and the bathroom was not bad with shower facilities. I didn't notice the ship rocking in the night - more so just in the evenings whilst watching shows whilst travelling from one port to another. At times, it was a bit disorientating - but you kinda get used to it.

The ports travelling into over the week were:- Palma, Cagliari (Sardinia), Naples, Civitavecchia (near Rome), Ajaccio (Corsica), and lastly Mahon (Menorca). I decided to go on a shore excursion every day to explore the cities upon arrival and other cities to get a feel for the country/city.

Wednesday 15th April - was spent at sea

Oh...you may be wondering who I travelled with? Well..I went with..just me! It was something I wanted to do on my own and to be able to experience more of life thanks to my donor. I did speak with a lot of people including crew onboard who all said how brave I was to go on my own. I explained, that I didn't see it as brave and after all I have been through in life - was an exciting adventure and that I have travelled on my own too. There were a couple of times I did get overwhelmed with emotion that I could do this and how great my life really is!

On Thursday 16th April, I arrived at Cagliari (capital of Sardinia)
Cagliari was a very pleasant city, lots of hussle and bussle and great to explore other cities which included, Bonaria and Castello.
It was great after a day at sea to finally arrive at a city and get a chance to go off the ship. I wanted to send some postcards and went on a mission to find stamps to which I did within the last few minutes I had left and post them!! So those who received - be grateful..lol.

Also how wonderful for warm weather too! Generally it was quite hot whilst away , with a couple of rainy/overcast days. But, I did not let the weather dampen anything and even walked in the rain!

That evening, I watched a show called, "Magic of the Musicals" to which different scenes were done from mainstream shows such as:- Phantem of the Opera, Chicago, Les Miserable and so on - which were absolutely awesome!!!!!! Then a late night performance with a singer/comedian called, Jayne Curry.
I never used the nightclub on the ship - even though I probably went to sleep each night about 12-1am. I can club anytime, anywhere...besides, I wanted to be up early each day to have breaky and explore each new city upon arrival!!

On Friday 17th April, I arrived in Naples
The day I had planned was to visit Sorrento and then go onto Pompeii. I have to say that Sorrento is such a pretty city and has lots of cute shops and plenty of cafes..but no starbucks (lol). Lots of tiny streets and side shops...so much to explore. Also, a great base to go onto Pompeii, or the Amalfi Coast or even the island of Capri. Somewhere, I would consider coming back again.....well...that was until I went to Corsica and Menorca! Here is the entrance to Pompeii, and there was so much history inside...kinda felt freaky, visiting the remains from an earthquake in 79 AD by the mountain Vesuvius. It was a sudden eruption of ash, cinder, lava mixed with mud that flowed and took the residents by suprise, who were killed trying to escape. After the disaster, Pompeii remained buried under a layer of ash more than 6 metres deep, a city that was suffocated to death. The tragedy came to light more than 2 centuries ago...and here I was in the heart of it all!













The other photo, is of a plaster cast of a body left from the volcanic eruption, and I saw many including a dog! This was quite sad as the poses were caught obviously illustrating the true horror in these times. I felt like a right history buff, and even bought a book on Pompeii with a dvd..hahaha...Saturday night TV!!! (not..but, mid-week). It was fascinating seeing places like their:- bakeries, houses, shops, prosititute parlours (even in those days too!), and much more to feel how the city was before the sudden fate of it all.

My evening back on the ship was spent watching (not for long) a George Michael tribute act (not my cuppa tea) and watched others play bingo, the casino!! Time to sleep - for the next day's adventures.

On Saturday 18th April, I arrived in Civitacchia
Originally I was planning to spend the day onboard the ship as there is plenty to do and heaps entertainment/activities. But, I decided to re-visit Rome and spend more time at the Colosseum (which I had seen 2 years ago when travelling through Europe - but never went inside). I was very happy that I did decide to do this. WOW. The Colosseum is breath taking, and amazing to think about all the history of that time. How people enjoyed watching people being eaten by lions or other animals as entertainement and how men fought with their lives.














From the Colosseum, I walked to another landmark called the Pantheon and then onto Piazza Navona whereby a political demonstration was going on. Not sure it was the ideal stop...but coconut ice-cream was beckoning me!!! Lastly walking through all side streets (getting lost always happens to me) to Castel Sant Angelo (castle) with minutes to spare before the coach was due to take everyone back to the ship.
The evening was spent being entertained by a comedian called Maxwell Plumm, and laugh a plenty that night!!

On Sunday 19th April, I arrived in Ajaccio
Ajaccio is in Corsica, a French speaking country - and mostly consisting of mountains! The best views are from the top of the mountains and included a scary coach ride on very narrow roads to get to a point to then go onto a mini train ride (check out the train, it was like Bob the Builder had just made it..hahaha) through the mountains. It was a bumpy ride, to say the least (gulp) and a great way to see the spectacular views! There were a couple of stops, wherby walking higher up to see even more wonderful sites (as this photo below shows, which is the Lake Tolla).



















Next stop was a trip to a honey farm in Corsica..mmmmm....YUM!! I love honey, so was very excited by this, and was able to try many different types of home-made honey out there. Yer..yer....I did end up buying 2 different types and have already opened one since being back home. The evening was delighted with yet another singing/dancing show - wow - these singers/dancers are talented. I felt like I was in the West End! The crew had their own late show called the "Shippendales"...hahahahhaha...not quite the muscle hunks I was expecting - but puny wimps, maybe one was ok - but the rest definitely put a smile across my face. Yes, I have photo evidence (but not for here..lol).

On Monday 20th April, I arrived in Mahon


WOW!!! And I thought Corsica was beautiful (kinda fell in love with the place, and would love to re-visit). But.....Menorca was truly stunning, very small island, tranquil, breathtaking sites, and just look at the crystal clear waters glistening in the hot sun!!! My tour that day took me to Fornells (a fishing village), and then to Monte Toro the highest peak in Menorca. Then to another village called, Torralba and lastly Binibeca ( a very busy day!). My last day too before heading home...poo hoo.

However, I also felt ready to come home...need to eat better and start training again ready for my Transplant Games in July.





On Tuesday 21st April
Home Sweet Home!! After a long day travelling and my drive back to Essex, and a much needed stop for milk - to have a proper cuppa....arrived shattered and ready to sleep! I felt a bit strange with a swaying feeling, as if still on the ship. But, I'm pleased to say after a day's rest - I am back to normal!

Now a couple of days have past since being home, and my life is getting back into action. I definitely love travelling and exploring different countries...and want to go somewhere different again later on in the year. Go Jus..Go!!!!!

Sadly, whilst away a friend called, Petra who also had a lung transplant (at Harefield Hospital) passed away, and I was very saddened to hear this news on my returns. R.I.P lovely Petra. All I do in my life is in honour of my donor, and my friends who haven't been as lucky as me. I want to live a long time, and achieve many things in my extension on life.
Last shot to end my blog...a windy day at sea!!!

Much love to you all and wishing my friends waiting get their gift of life soon, those poorly to get better, and my friends I have lost......always thinking of you x x x x

Head Strong

Like my new look?? lol. Well, not so much new look - yet again new hair colour.....for the short term until the next change.hahahhaha. Those who know me, know my hair changes colour as often as the seasons change!!

Well, the last four weeks - have been a time of reflection for me. Realising how wonderful and prescious my life really is. How very grateful I really am. How sad it is that some of my friends haven't been so lucky with their journies, and how those waiting for their life-saving transplants are getting fed up waiting for the call. Also, sometimes how I get stronger in unforseen circumstances and turn any negative into a positive. Maybe, I should be a speaker in this..lol.

Sometimes, I suprise myself with my own strength - it's like I can just have a moment or two thinking/expressing to those close to me...then take the attitude.."right...come on Jus...get with it..things to do..people to see....goals to achieve...no time to worry about silly nonesense brought upon by anyone".........and off I go..full steam ahead!!!!!!!! Woohooooooo!!!! I really am so happy, and nothing or no one will deny that from me!

So....as for "enjoy the time you have left"..well, I have made my feelings pretty clear in a previous blog. I am going to live until I'm 100 and that's that..hahaha!!!

Well, my life is all about achieving new challenges too, and last week I tried a gym challenge set in 3 levels of difficulty. I went for the beginners (which I may add - was still extremely hard). Al (the personal trainer), told me, "this is going to be the hardest thing that you will do in your life"....and he wasn't wrong!!! But, I was determined to keep going even at times when I did get breathless - but wanted to also keep going! The challenge was co-ordinated by both Fran and Al (Alan) who are both helping me towards my training programmes.

The Challenge as below consisted of:-

ROW - 750m
DEAD LIFT - (7.5kg per side on black barbell) x 20 reps
PRESS UPS - x 15 reps
TREADMILL - 250m (0.25 km)
FLOOR WIPERS - (7.5kg per side on black barbell) x 10 reps
CYCLE - 750m (0.75 km)
PUSH PRESS - (5kg per side on black barbell) x 15 reps
BURPEES x 10 reps

Definition of a burpee:-
Start with hands on the ground in front of your feet. Keep your back straight. Then Kick feet out behind you into the top of the push-up portion of the burpee. Your body should be straight and tight in a flat plank. Push up into the top of the push-up position again. Then Jump your feet up to your hands into your starting position. Finally, Jump into the air and clap your hands overhead so that your ear is exposed in front of your arms. Your feet should leave the ground.


I achieved this in 17.54 seconds, and will be repeating this challenge again this Thursday 8th April, and I'm hoping to improve on the time as well.

Ok ok.....think I have waffled enough. I hope you all keep well and smiley, and hope transplants happen for those waiting whilst I'm away on my holiday next week. Thanks for eveyone's continual support and recently, lots love to you all. Miss Head Strong x x x

The Sweet Escape

I am absolutely shattered now from driving 2 hours each way, spending the day at hospital and seeing a few mates! There is no rest in my life..all go...go go!!!!

The first procedure is to get my blood tests done, and in the last blog I said that after nearly 3 years of them...still clueless. So, I made a point to find out what and why there were doing..lol. There are 8 blood samples done in total being:-

1) a full blood count - which checks for infections and if I am anaemic or not
2) a sample to check my kidneys are working
3) a sample to check my liver is working
4) a sample to check my glucose levels, whether my sugars are too high or low, and for diabetes
5) a sample that checks for more infections (a specialised test..!!??oooer..lol)
6) a sample that checks my tissue type, and my anti-bodies (this is done every 3months)
7) a sample to check whether my blood is clotting
8) and lastly a sample which checks my medications - that they are still working fine, or whether levels need to be adjusted.

Then weight, blood pressure, temperature, oxygen saturation levels are done.
Then a light walk to get my lung x-ray...and I can't seem to go anywhere without bumping into staff that I know there..have a good old chit chat and some giggles...Oh..better get my x-ray done..tee hee!!
Then off to the "lung room"...as I call it, where I have to breathe into a machine to get my lung function results. As much as I exercise, this is really hard work.....my first result bizarrely was ok, and the other 3 declined each time. I was running out of puff, and had had enough!! I actually felt good for the first time in ages after doing my lung function (slight decline from last visit, but nothing to worry about).

Ok Ok tests all done..now I was off to meet a mate for lunch, Carrie in Uxbridge - where I ate the biggest jacket potato known to man with tuna mayo and cheese......yum!! Hopefully next time, I will get to meet with Liz - hope you get better sweetie. Now my drive back to the hospital feeling full and wondering what my Doctor would say......But, I still needed and wanted to see Sally who about a week ago had a double-lung transplant, and Grazyna another LAM lady staying in for a short while.

It was great to meet Sally, and going great guns!!! Just look at the photo at the top of the page!!

And fabulous to see Grazyna....both Grazyna and I last remember seeing each other when we had our oxygen tanks, and it was so nice that we were both without oxygen and tubing! Woohoo!!!!

So after more chats with other patients and staff.....time to get my results, and I flew away with flying colours. Yippy!!! My next check up is in 6 months time, which will be slightly after my 3rd year annual MOT....which will require more tests. But, I am delighted to be leaving hospital feeling happy, and ironically a tune played on the radio called, "The Sweet Escape" by Gwen Stefani. Those who have been following my diaries from my website may remember how this song played a big part in my life every time I went to hospital in the early days...as I feared rejection. So.....loud as you like I was singing away in my car - no care in the world how stupid I may look!!! Lol

Thanks for all the lovely messages, and thanks for still being interested in my life post - transplant!! x x x

Pre-Hospital Feelings

Hello peeps.

This Thursday (26th March) I am back at Harefield Hospital to get my lungs checked. I feel positive and hope all will go fine. The only struggles I have, is when it comes to the lung function tests. I tend to get nervous and panick which affects how I breathe into the machine bringing about low results. I know if I can't get them up....my doctor will think it's the first sign of rejection and want to keep me in for further tests..poo hoo. And, this happens every check up and I wish I could shift my pre-nerves on this matter.

Every day (well almost) I do my own spirometry and therefore know my lung function is fine. I do change every day from results varying high one day to low another day. But over a period of time it is always like this, and my Doctor has said that's fine as if you draw a line throughout the up/downs...it is showing stability. Not sure if that makes sense to any of you, but I gained reassurance from this.

Other tests include plenty of blood tests, and believe it or not - even after nearly 3 years of this, I still don't know what they are all for..hahahaha. I think I may write it down this time and actually be "with it" as to what and why they are doing with my blood!! But from what I do understand it is checking my kidneys (as the medications affect this...some people even need a kidney transplant too later on down the line), and checking my tac levels (again to do with my medications). The rest I will endeavour to fine out for my knowledge and all of you wishing to know too.

Then off for a lung X-Ray....into a cold room wearing a flowery hospital gown!!!! Not my idea of casual wear with jeans!!

I have to have a good result day, as my holiday is in about 2 weeks now. If my Doctor has any concerns with my lungs...then it may be a case of...."man overboard" when I'm on that cruise!!! As I am going and thats that..and I will be fine!!

I am hoping to also meet with a few friends this day too, one being a nurse who previously looked after me when I was very ill, and an old mate who works in Uxbridge. Also to visit Sally, who has recently had a double-lung transplant and we have spoken via the internet for years following each others' journeys. I am delighted that Sally has also recieved the gift of life!!

So..other news...urmmmmm...exercising heaps, lost a little bit of weight from this and with eating better foods (of course I have bad food too...I can't always eat like a rabbit on cabbages and green leaves)!! Counting down the 2 weeks until my holiday...suitcase is out...clothes/shoes being decided upon. I'm sure there are other things, but, I think this will do for now.

Oh..I also met a lovely girl called, Charlotte who I visited at Broomfield Hospital - who knew about me and my story from being a "tabloid/media" face. Charlotte has a rare lung disease and requires oxygen too. It is quite funny really, as she has seen me twice in two different shops in my home town, and even though we have exchanged messages via the internet (I haven't seen her back when out in these places). I said you must actually say "hello" and not to be shy. I was quite taken a back when Charlotte said that maybe I wouldn't be interested in meeting with her as probably gets lots of messages (or words similar). Well, I wanted to meet Charlotte - so I did - Easter egg in hand, and even though maybe I am known for being ill (don't like people saying I'm famous)...I am normal and just like everyone else!!!

Have a happy week everyone, keep smiling, and keep well x x