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

Tough Cookie

Well the thing when writing a blog, you have got to be in the "mood" to write, and also have something to say... (some people will say..I always have something to say..haha). This last week, has been a challenging time for me.....had someone with whom I thought was special say some ridiculous nonesense to me.

But in true Jussie style and strength, I amaze myself sometimes...I am back full of positiveness and high energy! Life throws things at you when you least expect it, challenges your mind, tests your patience, and sees how far it can push you. The question is, how much can you take before you crumble and fall?? I wouldn't be human if I didn't have a wobble and think "Oh Cripes"..but that doesn't last long!

I realise my life is an extension.......and what would you do, if someone said to you "...enjoy what time you have left...."???????

I mean....ok.....it is going to happen to me...and to all of us......but I can still live a very long time (and I want to be the longest surviving double-lung transplantee). Not to be negative (because I'm not)...but anything can happen, and can abruptly halt at any time by unforseen circumstances ie: accident. However, just because I have had a transplant...doesn't mean I am a write off..a ticking time bomb. I can still live my daily life like anyone else, still enjoy the life around me.

I was extremely hurt at first by this, then my hurt turned to anger (and I'm not an angry person)...and now all those emotions have churned into positiveness. How? Well.....why cry over spilt milk? Why waste my energy on feeling miserable? Why worry about somebody else's careless statement? Why sulk over something that isn't going to happen, as I WILL live a long time. Why..just why...why waste another second worrying....why not....except, deal with it....put it behind you..and move forward!!

Move forward into good energy...be with people similar minded....be creative...be pre-occupied...be happy..and always smile (and that I do!!). And plan on exciting things such as a holiday, and I have done that. In less than four weeks I am going on the most amazing trip of a lifetime on a Meditterranean Cruise on my own (oh yes on my own..can't wait) for 7 nights...Woohooo......fabulous!!!

I have so much to look forward too, my 3rd transplant anniversary and the UK Transplant Games are in 4 months, my first marathon in 7 months, and the buzz that is just life!!

I can put nonesense behind me, forget, and strive forward onto bigger and greater things. So what makes me weak, only makes me stronger, as I am a Tough Cookie. x x

February Frolics

Woohooo..what a great month February was! I celebrated yet again another Birthday - 36 and an extra Birthday thanks to my donor. I still think of the man who lost his battle and saved mine. Infact, there probably isn't a day when I don't. Almost as if he IS now me, and a part of who I am. He is what motivates me and keeps me living and smiling and appreciating every extra day. Long may I live.

I feel like a kid - even though I am not a child anymore..it's really hard to explain..or maybe not. To know you are dying - then to be given a gift that turns your life to one of normality and like everyone else's...everything and anything excites me. I relish every day...all that I can do....like a bee buzzing and slurping up all life's rich honey.

WOW..another Birthday...so I must celebrate!! So on my actual Birthday (12th) , I had few mates over and cooked a lasagna of all lasagnas.....went to London the following weekend for a meal and clubbing night. Finally - a group Birthday celebration with sum other chicks from work - by which we all went into the local town. I have had such an amazing time this month. I have danced, eaten, chatted, giggled, and loved any minute seeing my friends...

The last Birthday prior to my transplant was a very different scenario.......

I remember being treated to see a show, Circe De Soleil...a fab acrobatic circus act in London..that night my lung collapsed and I woke up during the night...screaming at my parents to wake up! I told my Dad my funeral wishes..inbetween gasping for air to help me breathe...I could feel my body shutting down.....what a horrific and scary time...to which I induced into a three week coma. So..I guess you can now see, why every Birthday that I get to celebrate - truly..truly delights me...and why maybe I don't act my age - and why I feel like a kid!

Also February, has been a positive month getting back into my fitness again. I guess I slipped for almost 3 months of doing nothing...partly being ill before Christmas..enjoying the festivities and foods..YUm!!! Then loosing my confidence to start up again and when I did try again in the gym, I felt totally deflated as all I had achieved..had now lost :(

However......I do and can pick myself up again. My donor tells me off..and I know that I will not do well if I don't keep myself and my lungs healthy by being a lazy pudding slacker! What actually helped kick start me..was joining a 6 week beginner's running course, which will also go towards helping me with my half marathon in October. The running group, is a small group of women only, and more 1-2-1 coaching is given as opposed to me slogging away in the gym with no coaching. I guess I need help..as much as I can get and encouragement along the way. Sometimes, I get frustrated still with my breathlessness - BUT it is no means how my life used to be and I AM very grateful. Guess I just wish I was a super duper runner, who could run easily for 10 miles and not need stop/start as I do now. But...I know even if I do walk and run..whatever I do...WILL be a huge achievement for me.

I would also like to thank the fitness team at the gym, who have given me support along the way, I really appreciate it - especially to Fran (who also coaches the running course) and Alan.E (who is such a good motivator) - thank you both. x

I am also starting a 5 week street dance course, and Badminton (just tried twice recently) - to which I hope to get onto a Badminton course soon (in April). And also once a week do Body Balance (which is a combination of:- yoga,pilates, and tai chi combined) to help with my flexibility and stretching.

But what about the pudding slacker? No more Miss "I've got to have a sweet dessert or cake every day"....eating lots salads and healthier foods...avoiding alcohol now (not that I drank much in the first place). I have just re-adjusted my foods from last week, and it's amazing how exercise/healthier foods really DOES make you feel "ontop of the world" and that with a 2nd chance on life...every day is like "WOHOOOOOOOOOOOOooooo"!!!

Finally, my wishes goes to my cousin who has recently had a cornea transplant, a body part that some people think of not donating. If he takes to it - which I'm positive he will..then he will regain his eyesight and not become blind. Amazing amazing.

Over n out lovelies...roll on more happy days x x x

Past Memories

Hi everyone....hope you are having a good week so far!?

I often have people asking me about my journey, and it has been mentioned that when I was in a coma not much was on my website about this. Recently, on the Lamline (forum for other women with the rare illness - Lam) it was asked about again. Below is the response to the email in question, which I decided to copy and paste on here too. Also I am no longer with my fiance who you all knew stood by me throughout my illness and the transplant, and I talk about that aswell at the end of the email.

........"As for the induced coma - and no talk of it on my website.....I went back to have a look myself. As I was very ill, my Dad was writing "updates" on my progresses with my health at the time - and when I was able - he was my PA..and wrote out what I wanted to say on my diaries and type them out for me.

My updates started in April - after the period of the coma. I went into a coma shortly after my Birthday - and for 3 weeks. My lung had collapsed 3 times within a week, and I told Dr.carby that the 3rd time - I was telling my dad my funeral wishes (it was a close call!)....and the team at the hospital/Carby decided that an operation would be performed to try and do something to what was left of my left lung (no right lung functioning by this time). I didn't take to it - which is why I was put into a coma. It was supposed to be a four hour operation......not quite - eh!!

My Dad also never wrote any updates - my parents I have learned during this time - underwent counselling - and preparations in the eventuality of my death. It was a very difficult time for them both - and I can understand not something easy to even want to write about.

Even when I came round from the coma, I still remained on life support for weeks - and wasn't told initially that I had been sleeping for weeks! So even when my Dad was my PA..my first exerpts never mentioned anything. However, Jon (who was my fiance at the time - decided to tell me). Jon told me I had been asleep for 3 weeks, got MRSA, pseudomonas, C Diff, an urinary infection, had an eye infection.....OMG I couldn't even comprehend this..I was unable to talk,move,eat, or drink!

However, I found some lines, that I did write about being in this condition as below:-

March 8th 2006..."" Hallo everyone. Thank you to my Dad who is typing this for me.

I'm on a ventilator to help me breathe - and I still can't talk or eat. So right now I have food on a drip.

Its hard - but I have good and bad days and I reckon it will take weeks yet to progress."

March 11th 2006...."
I'm attached to a Spaghetti Junction. On a ventilator - probably will be on this for weeks to help me breathe.
Getting stronger daily, a slow progress.
Can't believe how long I've been here & how ill I was during my sedation period.
Wanting to get better and wean myself off ventilator..............oh the joys to be able to eat, drink and talk again!!!! Something to look 4ward too."

March 15th 2006..""Had a scare yesterday when inside of lung collapsed. Doctors sent me to sleep plus drugs to paralyse me. Another chest drain was inserted on my chest. I've lost count now how many left "Freds" I've had...8 or 9...

Anyways...sitting in chair now writing this. Done some physio work + cycling machine for lower legs today.

Feel ok...just want to come off vent machine still. Allowed tiny sips of water through a straw now. Also flavours on the tongue - but no swallowing - I have about 5 different cordials and mix and match. I taste on a pink sponge which I squeeze excess dry then swab on tongue."



April 4th 2006...."From February - having 3 lung collapses in a week. On the 3rd lung collapse I was then thinking I was not going to make it - and saying goodbye to everyone. Then undergoing a risky operation from or after which I contracted contracted many infections and then being on a life support machine for weeks while I was unconscious.

I can't believe all that I've been through - it's a miracle I am still alive - I just don't know how. What a battle I've faced! I just hope that I get my chance for a transplant whilst I'm here."

April 12th 2006...."Today, has been the first day that I felt better and I must re-start my physio and weaning again. It was hard getting up to try to walk again. It seems to take such a long time. My muscles have so wasted away - guess its going to take time. So, I know from that alone - I will be here for some time just trying to learn to walk again - one of the things we take for granted."

April 23rd 2006..."This is a hard battle I'm facing - and oh for the day this is over, and I can be 'normal' again. To be like everyone else... walking, breathing, eating properly, to exercise, to live a life away from living a life in hospitals."

Also, I have to be honest..that whole experience for me - was extremely difficult - and a very DARK phase in my life - when if I'm honest, how I was at that time..I just kept writing I'm dying all the time..I was struggling to breathe even with the ventilator...and there is nothing more scary than hearing a machine breathe for you and work as your lungs - whilst you are awake and conscious..totally freaked me out! I rarely talk about those times - which is why perhaps - there isnt so much written on my website. I am finding that now these images and scenarios are re-surfacing - and sometimes upsets me so much. I can't believe I endured and survived all this - when even after the transplant, my surgeon said "technically I should have been dead!" (my lungs were completely destroyed with dead lung tissue and cysts).

But, I must stress again - I am a very positive person - and my case is very rare in terms of the advanced symptons of Lam. It doesn't mean you or any newcomers will go through what I endured. But, I hope by being so frank - it WILL help anyone who may face difficulties with lam at a later stage.

I also did mention some of my ordeal when Melissa was going through a very rough time (still miss Melissa very much) and I opened my heart to the realness of my times in ITU - and loosing all sense of dignity and hygiene - as I was a vegetable and unable to do anything myself.

My journey has taken a full circle. I live for life. I have a zest for life like never before. I do not wish in a million years I went through any of what I did. However, I kinda believed it was meant to happen - to give me understanding how prescious life is....how to appreciate all and everything every day. To always be happy and smile, and try and achieve things/goals with my extension. It gave me a purpose to raise lam and organ donor awareness..in the media...raise funds...give talks..and now I am going into my 5th year of this!!

Phew......this IS a long email...sorry peeps...Oh see I did tell those - that I can waffle too!!!! ..ooopppps

And as to the fairy tale - well that ended - Jon and I grew apart - both wanted different things. But we are still in touch and get on very well. We both have moved on with new partners and both happy....aww