February 2007

February 2007

Wednesday 28th February

Further to my diary entry yesterday - saying that my life is a bit like Marmite (the spread)..loving it or hating it. I just want to clarify...that I AM loving my life..even though I have all the dramas still associated post transplant.

Also, I would like to share another heart rendering story about a young man, only aged 27 named Peter. Peter has been desperately on the waiting list for a heart transplant now for 2 years! He is married with 3 beautiful young daughters, and is being kept alive by an artificial heart machine (LVAD) which runs on batteries or by main power supply. This is not how his life should be, and he needs a heart to see his daughters grow up. My thoughts are with him and his family. This whole transplant world never ceases to amaze me of all the incredible real life sagas that people endure whilst waiting for the most amazing gift of life.

Have a great day everyone. X

Tuesday 27th February

My life at the moment is a bit like MARMITE....you will either love it or hate it!!! And, I have found the most appropriate song to match the Marmite slogan..being Gwen Stefani's new single "The Sweet Escape". Gwen Stefani is a bit of an abstract artist both in her fashion sense and music style. I have heard the song many times on the Radio/TV...a new song always get plugged until one is completely brain washed!! I wasn't even sure if I actually liked the song either..so again a comparison to Marmite..loving the song or hating it!

I am a very positive person and thrive on good energy, saying things like, "keep smiling, stay groovy, woohoo, and yeeha!" The song encorporates words such as..'Whohoe, whihoo'...which sound like..Woohoo..yeehoo (yeeha)..and very apt to my personality!!! Also the words..'the sweet escape' are a bit of a parrallel to my escaping a Broncoscopy for weeks and weeks so far. I keep escaping the dreading Broncoscopy and biopsy...woohoo...yeeha!!!!

Over and out for now. Speak soon everyone - and keep smiling!!...he he...and I can't wait to get off these high levels of steriods...otherwise soon I will become The Incredible Hulkess. X

Saturday 24th February

On Wednesday this week I did an abs class for 45 minutes...oh the pain the next day!! I was booked into a pilates class the following day - but my stomach hurt so much ..ha ha..so I took a welcome day off. Yesterday, I had my favourite bacon,lettuce, and tomato sarnie....hmm, I wish - more like my blt class - working on my abs!! Today (Saturday), I did another ab/cardio class and tomorrow will be my dance class. Providing, all goes well again on Monday I have a class booked every day except Monday and Saturday..but that may change into a class if I feel like it. I am supposed to exercise every day to improve my lung function and luckily I enjoy doing so..otherwise I no doubt would be struggling to keep fit and improve my new lungs.

Change of subject now...SOUPS!!!??? Can anyone help with recipes please? I will source the internet too - but thought maybe some1 may know of some good, easy, healthy soups to make please. I have recently purchased beans such as red kidney, cannolini beans, barley beans and so on..that you soak overnight before cooking with..can they also be soaked together - or do they need to be kept in separate dishes? So...I guess it looks like I'm a novice in making soups...(yes I am, he he) - but, I love them sooooo much and would love to make! If anyone can help please email me on my private email (details under contact us..starting with justine@j....). Many thanks!!!

I am also assuming that I will be returning home after my check up this Monday, as I feel ok and feeling positive that nothing will go wrong. I have completed my Birthday video montage...which is now under the heading "Fun and Photos"..enjoy and make sure you have volume on!!

All else is quiet..for a change..but my final thought for today - is to wish anyone not feeling well - to get better soon (some of my friends..waiting/post transplant are recovering) and anyone else not feeling too good with health issues too. Keep smiling and stay happy! XX

Saturday 17th February

Welcome to another day in the life of lungs behaving badly even with healthy food and exercise and daily drugs. I feel better today...just going through the motions. I always assume after a check up that I'm coming home, but, think on Monday I will be staying in for that oh so wonderful broncoscopy (that leaves you coughing for England after and with a sore throat..and of course the anaesthetic wearing off..making me sick (oh the joys). Also, a little fear feels with me actually having a biospy, as when you sign the consent form there is a 1% chance of a pneumothorax (collapsed lung). Why I am concerned if only 1%..well other recent transplant patients have had. However, if it happens..guess I am a pro at this now. I would probably cry then laugh - (would be only number 16 lung collapse)...I think I would then contact The Guiness Book of Records..to see if I have a worthy case!! Ha ha.

I am looking forward to a meal at a friends house tonight, street dance class tomorrow..then my drive to Harefield early Monday morning. I'm loving music right now - into so many various bands/singers..and finding that music is helping with my emotions.

Well..I've got a busy day ahead...and feeling fabulous. Further to my.."make someone smile" statement yesterday.....I would like to say to all of you...that...who is getting me a Frappuccino...oops...wrong statement...he he.. I meant, I'm smiling because you all have all made me smile...so thankyou and let me see your cheesy grins. X

Friday 16th February

Hmm....here we go all over again, back at Justine's funfair trying out an assortment of rides....highs..lows..thrills...spills...laughs...tears. Except, I haven't won a goldfish in a plastic bag yet, or bought any candy floss....yum..candy floss - where can I buy that from, haven't had since I was a child.

I suggest if anyone is reading my diary to read latest news entry first re: my update from Harefield's check up.

So....now I shall delight everyone with news of a drowned rat, U2, shaky lady, light weight ab crunch champ and benefits of planning ahead!

Well what a couple of days I've had..one would think that post transplant you just get on with your life...for the last 2 years I have been in/out many hospitals until I decided to move in and set up home in a room at Harefield Hospital for 6months. However, I am still going in/out hospital for weekly/fortnightly checks ever since the surgery (except for the 4weeks off in December..what a goldmine!) However, it is all in the best interest to monitor my new lungs. As most of you know now, I have a problem with my anti-bodies which nearly took me off the waiting list, and just last year I was tested for chronic rejection (OB..Obliterative Bronchiolitis) which came back inconclusive. Also, I must stress that my quality of life is so much better than prior to my lung transplant. At least I can walk, breathe, and talk...well...some people did enjoy the quiet (so, I was told..he he...guess I'm a bit of a live-wire). And it's amazing not to struggle with breathlessness - like gasping for air to do simple tasks such as talking and walking a few steps, putting on a pair of trainers and so on.

I had a gut feeling yesterday, that my tests would be good and that I would come back home....(I had orders from my friends..you know you who are..ha ha). I had just completed my blood tests and chest x-ray..then walked up the stairs to the lung function room. Oh dear, my function was soooooo bad and I asked to do a fourth go (normally they take the best reading after 3 attempts). I was like....I'm not staying in - I want to go home, and I'm going to blow out my entire chest away into the machine. It was just not happening...so feeling glum and having to wait 4 hours to see my consultant..I drove to Rickmansworth. Sorry Starbucks...I entered Cafe Nero..for caramel latte, mushroom soup, and a toasted pannini (not all at the same time..well..). Roll on the afternon, and I was suprised and delighted when I was told to come back in 10days time. Driving home, I belted out U2's song, "What a Beautiful Day" and bopped away in my car.

The following morning (today) Harefield Hospital rang to ask me to come in this Monday and not wait - as concerns with possibilty of Rejection. The thing is, I look and feel fine - but I am clueless as to what mayhem my lungs are causing on the inside. Hmm....I am not quite sure what happened after that..I came downstairs and was trying to talk..but just starting shaking..my mate asked if I was ok. I probably spoke so fast - like a rush hour train trying to get to its destination on time..I just couldn't stop shaking - guess I was going into shock (shaky lady).

I felt like I wanted to cry but couldn't at that time. So...time pressing on, and I had some errands to do before my legs/bum/tums class. As I entered the gym..I started to feel a bit wobbly and very emotional. I was sure a class would ease my mind and the instructor is such a good motivator and with a very bubbly personality that - that alone would cheer me up (and talking to a few people). Oh my, how many stomach crunchies did he ask us to do...the pain...he he..but worth it...so I'm thinking of entering a competition as "light weight ab crunch champ". However, no sooner had the class finished - and reality returned. I got in my car and did my best ever "drowned rat" impersonation and cried all the way home whilst driving. I even sat in my car on the drive when I got home and cried whilst listening to "What a beautiful day" again. Well, having let out all that nonesense - I felt better again. I feel such a wimp when I cry..but..it helps me..to move on..and just get on with life and continue to be happy. I also don't want to go back on anti-depressants again..I feel stronger now...and nothing is going to bring me down, even if I do have rejection!

So....bearing all this in mind....I know I did the correct thing by having my Birthday when I did... the "benefits of planning ahead"!

I am in the process of making another video montage of my 34th Birthday party..but doubt it will be ready in time before Monday....and also one I would like to share on my website.

Okay dokey..tummy rubbling now..saying "I'm a celebrity belly..get me some in food in here". Cheerio everyone, and have a lovely weekend. And do something nice over the weekend....or say one thing (or more) to your partner or family,friends, strangers and put a smile on their face. XX

Sunday 11th February

I have just spent about an hour writing an epic diary entry - only for my laptop to play silly games with me and decide to crash and burn all my work..oh Bar Humbug!!

So, now I will try and re-create another master entry - hopefully not missing out anything. What a mare, but hey.....one that is just not worth stressing over. I was mentioning about my wonderful Birthday party that I had last night. And glad that I have celebrated now - just incase I end up staying in hospital next week. I have had many great parties in my time, but last night was simply the BEST EVER!! I catered food for the crowd, we all sang, danced, laughed, and played games. (Some photos will go on website soon).

The highlight for me was when my girly friends and I took over the lounge, leaving the boys in the kitchen (drinking and not cleaning/cooking..shame..ha ha). So, in the lounge now and having a bundle of laughs - I sat on the sofa and watched my friends grab any remote control and sing into them as if they were popstars. (I won't mention any names incase I embarrass anyone). A song came on, "I will survive"...and those who have been following my journey from the start - know that this is a very significant song for me. Also the, I Will Survive mug purchased for me too. I always believed I would survive my 1 in a million disease. As I sat on the sofa watching my mates sing away I laughed with them. Then, something hit me like a bolt of lightening and I jumped up...took centre in the circle and belted out I WILL SURVIVE and danced along with everyone else - smiling so hard. This song went on forever - about 10 minutes - either that or it was on constant replay. I was so happy and laughing so much that my legs gave way and I fell back onto the sofa. My mates pulled me up, only for me to fall down again (this happened a few times). I ended up having jaw ache and a stitch in my jaw from all the laughing!

It was brilliant to see so many wonderful people - and I know those who were unable to make it..were there in spirit and evidence of all the fun will appear on my website in a little while - whilst I wait for my friends to email me photos from the night.

Feeling tired and exhausted I finally went to bed 2am....but was unable to sleep, so about 6.30 am decided to make myself a nice cuppa tea and sit and relax in the lounge. As I started to boil the kettle - tears started rolling down my eyes. Why?? I guess a sense of amazement as to all that I have endured over the last 2 years and my near death experiences - and sheer bewilderment that I am still alive. I started to re-read my Birthday cards from that night and was extremely touched by this.

It was about this time last year when my lung collapsed 3 times in a week. On the 3rd collapse.. I remember waking up my Mum and Dad and saying that I needed an ambulance. My body was shutting down, and I could feel myself blacking out and about to disappear into an empty space of nothing and air. I knew I was dying and was telling my Dad my funeral wishes. The sheer despair then in A@E not being able to breathe for 10hours that I sufferred - gasping onto every single breathe. Also my family coming in to say goodbye to me and me to them. I have experienced a few near death scenarios, and this was the most scariest ever, and the hardest one saying goodbye to all I love. I just remember at that point it was so hard that I couldn't bear to go on and cried so much..it was all too much. I have no idea to this day how I pulled through this - and trust me 10hours of gasping onto every single breath...words cannot ever describe how I felt truly.

Also the whole journey of my disease and all that followed and how each time I fought every hurdle. From learning to walk again after being brought back to life from being on life support, to the 1st time I drank a sip of water in 2 months....to the 1st taste of real food too...a tiny spoonful of ice-cream. To hearing my own voice after about 3months instead of people trying to lip read me. Phew...has this all really happened to me? Sometimes - I think I have been living in a dream and this hasn't really happened to me at all. All who see me say that by looking at me - you would never know. I don't need to pinch myself to see if I'm dreaming - my scars prove otherwise. And I am learning to love my scars and be very proud of them!

A few more tears shed whilst thinking about the friends I've lost along the way waiting for transplants too. Making me realise that my campaigning is vital and a part of my life now, and one I do not want to stop. Also smiling about my friend Emily who is slowly recovering from her recent transplant - to thinking about another friend James (waiting for lungs) being poorly in hospital right now. Come on James - get better soon!

But hey..it is not all doom and gloom - I just had a moment wherby I wanted to be by myself and simply reflect on everything and how precious life really is! If you really want to do something or ask someone out (for example)..life is just too short to sit and wait for time to go by. Act now, and enjoy the present...and live life to the max!! I needed to do this, and I feel blessed with my journey and strength I have found along the way. And to all the wonderful people across the world who have supported me and still do, to all my family/friends/fiance, for all the support, care, love and laughs.

So my tears gone, cuppa cold, I decide to clean the house for about an hour..then crawl back into bed and try to sleep.

I am feeling soooooooo happy and full of life! XX

Wednesday 7th February

Just a short entry for now, to say that things are going well. I have had some emails/chats with people being concerned that I may be charging full steam ahead again (and need to slow down a bit). But, I have been mainly going to the gym and not outside very much. I need to go to the gym to work on improving my lung function for my next check up 15th Feb. So, this will only benefit me in a positive way. I have been trying out various classes such as yoga, pilates, tai-chi, lbt (legs/bums/tums), and aerobics. I will be starting the street dance class again in a weeks time. Also, as some of you may remember I was learning Karate just before my diagnosis..well, maybe once my cardio has improved - I may try Kick-Boxing instead of Karate? I want to be one super fit ladies and be able to compete in various events. For those of you, who are not keen on exercising...all I can say is..it is the most amazing thing not only for heath reasons but gives you a real feel good factor and there are so many different forms of exercise you can do - it doesn't have to be just a gym.

Also, I am finally getting my hair done tomorrow, and not sure as of yet what to have done. I am seeing friends this Saturday to celebrate my Birthday...yippy!!! I hope to get some more pictures of the new and updated refreshed me...so watch this space.

I have been thinking to re-name my website..

www.justinelaymondRe-united.com

Why?? Well...it has been amazing how many old friends/work colleagues and so on that have made contact with me through my website/or seeing me in newspapers/TV etc... I have met up and spoken to some wonderful people and great to be in touch again with long lost pals.

Oops...from a short entry, this has turned out to be quite a long one...he he. Finally, I have attached a video montage with photos on my front page (Living with Lam and New Lungs)....There are a few photos that some may find upsetting and I only want to show the real truth behind how close to dying I was and how new lungs really changed my life and brought me back to life again! Have a good week everyone..and I can't wait to celebrate my Birthday! XX