justinelaymond.com

I have ventured outside a few times now, and had lazy days sitting in the sun eating lollypops/ice-creams. My weight has crept up because of this - oh dear....but it's good actually as my weight is almost back to how I was before my ill adventures.

I am really enjoying my time here, and my afternoons are filled with games, chats, laughs and tea. I also like to go around the hospital to say "hi" to people. One of the physio's has nicknamed me 'Santa' ....ha ha. Except, I have no pressies in my sack - only, 'Justine's Greetings' ...Ho..Ho..Ho..!

The only unpleasant thing that happened to me this week, was having a plaster removed from my stomach. Why you may ask? Well, as the plaster was being ripped away from my skin - I kept shaking and yelping. To my horror, the plaster (the size of a photograph print) had torn off some of my skin too! Ouch....!

It has been great to meet some people who have been writing to me (Sanjay and Sarah Williams). Sarah's husband, Peter is also at Harefield waiting for a heart transplant. I have met some wonderful people whether still here or gone home now, and I wish everyone well.

My nail art set is going well. Today, I painted some pretty flowers on one of the nurses nails for her night out tonight. I may have to get an appointment diary to book people in ...for Justine's crazy nails salon ....ha ha.

I really want to praise all the staff at Harefield, for the job that they do and the overwhelming joy they bring me on a daily basis - which makes me feel less like being in a hospital.

“ I am feeling like the air has escaped from a big balloon........going...going...gone....deflated! That is how I felt this morning…..and I haven't slept much from yesterday's 3rd false alarm. During last nights saga (21^st June), I remained quite calm and only in parts did I start to become nervous and scared. This affected my breathing - which I had to try and slow down. The waiting part is the most nerve wrecking and about 00.15 in the morning today, I tried to sleep until we had news whether the transplant was going ahead. I wasn't really sleeping, just resting my eyes and being peaceful. Well, as you all probably know now - it never went ahead and feeling numb I went to bed after hearing the news.

I woke up early this morning, feeling deflated and sad as I said above but knowing that I would be able to bounce back quick enough. I really thought that last night was the one but, my gut instinct was wrong. Maybe the 4th call will be the one and a double lung transplant - which is what I really want to get.

It is now the afternoon - and I am feeling better although a little wind swept from my visit outside. I am so tired as well and about to have a little rest.

Going to go now and sleep until dinner time and Big Brother - gee I'm hooked on that!

Wednesday 21st June (posted 4.30 p.m.)

" Where does time fly? I can't believe that soon we are approaching the end of June and to enter into July....my Summer vacation at the Harefield....not quite what I would plan through a Travel Agents...oh well! Last year, I had planned a weekend in Budapest, and then a holiday in Spain. My first lung collapse last year prevented the holiday plans, and saw many visits in and out of hosptial from then onwards. After my transplant...all people will see of me is dust trails as I go here there and everywhere..he he.

Last week, was a hard week for me with the lung collapse and the news regarding my anti-bodies post transplant that could cause chronic rejection. I was more upset the following day, however, that was then - and this is now. I have started my week with a positive out look again and I am feeling good and happy.

My hair has been cut again to just above shoulder length - and created a new image - yet again! I am further looking forward to experimenting with my makeup again as some vibrant eyeshadows I bought before my hospitalisation this year have been brought in from home....turquoise and purple! Soon I will be planning my own catwalk in my room - new clothes/makeup/hair styles/image changes....and I will be leaving Doctors and staff bewildered as to my many Justine personality alter egos...and with the staff in agreement that I am crazy and mad! So not only, will new lungs be re-stored but a sane brain to make me normal again. And no more fruit loop, nutty explosions and my crazy moments/changes sponsored by Cadbury's Caramel. If you are confused now or lost at my statements...don't worry - I do have mad moments where I get a bit extraverted!!

Other news....I went out today - yippy! And had lunch in the hospital restaurant - I was so excited to get outside again (portable suction back working). Jon was pushing me in the wheelchair..and I started singing..."Hey hey...we're the Monkeys..." I started acting like a little kid - silly really...but getting outside again made me smile and laugh and sing with joy!

There was also an open day within the Hospital for surgery that takes place for the hearts and lungs. I found this very interesting and also daunting especially seeing the implements that are used for surgery...gulp...that affected me...quite scary...thank heavens I will be asleep. I was fascinated by the anaestestist's room (even though I have been there before - I was unaware of what they do). It looked scary to see a plastic body prepared as if going into theatre with the eyes taped down...seeing all the tubes attached. But guess its good to know what I will be like in all events of the surgery.

So there we go....keep smiling...and I will too. XX"

Thursday 15th June 8 p.m. Diary Message(postedFriday 16th June 2006)
"I've had a bad start to the week and I feel empty and numb at this present time. I've had some more news re: my transplant and antibodies that my body has formed from my blood transfusion after my operation earlier this year. It's hard to explain, but I am more prone to chronic rejection due to my antibodies, and will always need a high level dosage of drugs (different from drugs normally given after transplant). I was told that if my case was presented now from another hospital - I would have been turned down from going onto the transplant list.

Besides that, my lovely lung decided to collapse again - only my 13th lung collapse to date or thereabouts. I have found it hard to keep track of them all. It was strange for me to see my lung on a cat scan whilst the surgery was taking place. In the past, my chest drains have been entered into the side of my body. This chest drain was through my breast (not very nice) I haven't seen the procedure done before, the only way I can describe the tube going into the lung is like having a knitting needle pushed into you....ahhh....painful. Amazingly, after the drain went in, I could see on the screen (connected to the scan) my lung re-expand up.

I was very sick after this procedure, especially as also earlier in the day I had new stitches put into my breast which were removed and re-stitched again with the new drain. Oh lucky me and why me?

Sunday 11th June (Latest diary entry received from Justine witten around 3 p.m.)

" Where do I start? My days have been mostly up but, with some downs along the way. I am back based in my room awaiting a new wire to mend my portable suction that broke. I was really enjoying the freedom going outside, but instead of being angry or upset that I have to wait maybe 2weeks for the new piece, I am calm and accepting how it is. At present, I have a fan blowing on me.....its sooooooo hot!!! I have been brought in some of my Summer clothes, so no more comfy clothes - but stylish items to again make me feel like me yet again!

My hair has been coloured yesterday. First I had red, then blonde highlights, and now.....drum roll (ha ha)....a beautiful brown with purple hues (and the blonde bits are purple). I feel great, I love changing my image - and its great that I can keep up the fun fashion whilst stuck in my room. I also have purple painted nails too. Talking of nails, I received a belated Birthday gift, which was a nail art set (to which I can do art designs on nails), and I absolutely love it. So, now I have another hobby along with my card making. Well, I will be a girl of many talents when I leave hospital....so hopefully finding a job again won't be too hard!?

On the whole my breathing has been better, and I have been adapting moving around the room easier now and not getting as breathless. Items that previously I struggled with such as flushing the toilet, moving the curtains etc - is more comfortable for me to do - so my physio has obviously worked wonders. I still get frustrated sometimes as I can't do everything by myself, and yesterday I had a bit of a breakdown and cried my eyes out. I looked like a drowned rat by the time I finished crying...but in true Justine spirits, I was back laughing and smiling soon after.

A couple of nights ago, I woke up about 3am, and found it hard to breath for a few hours as if a heavy weight was pulling down on my lung. Not much can be done now, but after that saga - it eased off and I felt more at ease. It is scary when this happens, especially when there is no warning and it just happens. I am just being kept stable/alive with my health on my suction unit. If this was removed - my lung would collapse again - and I don't want to think of the outcome.

This morning, was one of horror - like a nightmare on Elm Street....I awoke to find a part of my chest drain had fallen off from my body onto the floor (a connection part from my chest which links onto the tubing that goes into my drain bottle). This is serious as the suction is therefore no longer working and my lung could collapse. About 7.30am lots of nurses came in and a doctor to quickly try and re-connect me to make sure I didn't experience a collapse. My face was one of panic (would you blame me) as I realised what could happen. Unfortunately I have only got tape holding the tube in place, and a new tube needs to be ordered (specialist item not stocked -it should be now!)...so, extra care has to be taken that it doesn't fall out again. Gosh, my life is certainly full of sagas!! And I am ok - nothing happened to my lung (quick response from staff), phew!!

Besides all that, I have been feeling quite happy generally - don't know how I do it and remain so positive and calm. Never in a million years did I expect to face a life changing and a life challenging illness and overcome so many setbacks and struggles and survive them all. I still reflect on my situation and find it one of perhaps shock about how rare my illness is - and why me? Life does take some crazy unexpected turns. However, I have learned to face this head on, and enjoy what I can do (even though it's not the lifestyle I had before) and keep my spirits up...thank heavens I have a sense of humour. I can now laugh that I am unique and special to have this one in a million disease - and that it had to be me.

So there you it - a catch up for you all. Have a great week everyone, and enjoy the sunshine. When I finally leave my hospital home...I hope I get some BBQ invites....I just love barbeque foods and salads...hmm ...yummy. XX"

I have now been promoted to F-East Ward with an en-suite bathroom. Its very nice, except hard work for me going to the bathroom. Although it involves more walking as opposed to just a couple of steps onto a commode.

My physio has also been changed to a mini circuit regime, which I tried yesterday for the first time. A case of ....lots of stops to get my breath back and a very slow pace. Oh, for the day that I can breathe properly again.

I love the sunshine, it's glorious at the moment. The sun is definitely a happy mood enhancer with the heat and beautiful blue skies. Any down feelings get washed away and drowned out by the hot atmosphere.

I feel ok at the moment and making the most and best of my situation. I have detoriated with my health in comparison to how I was last year, But, I'm still battling through until I get my transplant call.

Im sure you all know by now - that two girls (Leila and Jade) are doing a sponsored sky dive for me (details on homepage) this month. I would like to wish them both lots of luck for the 13,500 foot sky dive ....gulp!

Also a few mentions to follow:- to Berfin, I hope Evin gets better and glad to hear you are still with Tonguc. Also, get well wishes to Lynn. Hello to Grazyna and Ollie (thankyou for the keyrings and bits + mum and Jon like their keyrings too).

I have enjoyed going outside for lunch in the hospital's restaurant and walking a little in the sun. I feel ok at the moment, and absolutely love all the support still coming in. Thank you all so much! xx