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Yippy i yea!!! I'm home!! Woo hoo!! I am shattered completely still and feel like my body could sleep for days. I was shocked when I was told that I could go home...and was not going to challenge the decision made. My consultant is still concerned about my lung function, and hopes that now the virus has cleared that my lungs should improve. Tomorrow, I am going to the gym, and will see what classes are available over the weekend. I just started my hip-hop dance class before I went into Harefield..but think I will do this class next Sunday when my body is a bit more re-charged as it is a full on fast and quick dance move class - not for the faint hearted..he he.

I also want to loose some weight from all the drugs that have been pumped into my body as I ate more due to the increase in steriods (which have now been reduced to a lower level dosage again).

I can't believe what I went through again over this almost 3 week period, and although I probably didn't look ill..I did feel it in parts. I met some wonderful people during my stay and a couple of other wacky characters too. I feel my humour and positive energy helped me pull through fighting this rare virus - and I can't say I was happy being the guinea pig with this virus, or the drugs used ...but, it all worked out in the end...and I just hope that I keep well over the next 2 weeks. (before my next check up 15th Feb). X

Whoopie! 2 clear negatives - tests for RSV - so I was allowed out of my room without my mask. You should have seen me - bouncing around saying "Hi" to everyone and finally applying some Benefit (make-up brand) lipgloss. But, no sooner than jumping around - I was barriered back into my room as confusion as to whether 3 negatives tests were required. Poo hoo - my face dropped and I went from an absolute high to an all time low. Also, confusion over the MRSA bug I had 6 months ago - as to whether I need to be in complete isolation still. It's a long story...but one being resolved.

You should see my arms now, they are so bruised from daily blood samples and various venflons going in for IVS. Bruises on my hands, wrists, up the arm in colours from blue, purple, green, like a tropical rainbow ....shame I aint got no gold there ...he he.

It's wonderful news about the RSV, and that the toxic nebs have now been stopped - what a relief! I am still shattered from lack of sleep and amazed just how may drugs have been pumped through me. My nose is so sore - it hurts - aww - and I am still using a cream to soothe my inner nostrils.

I'm still in limbo about what happens next. My lung function hasn't gone back to it's usual results, and I will need to wait to see as to what doctors advise and whether I require further tests.

Also, due to the increase in steroids, my already healthy appetite is expanding - as well as my face going balloon-like. I just need a needle to pop a hole and deflate my face now back to normal.....ha ha.

Thanks everyone for the continuous support, and I hope that I will be home soon, sleeping in my own bed, make some birthday plans, and change my hair colour - yet again! xx

Answer:- Very tiring!! And not much time off in between. However, when I get a chance…. I’m like, ok… mask on and leave my room and talk to patients one by one as I go along the ward he he……

I am extremely tired today as I hardly had any sleep last night. And after I cried my eyes out again last night and looking like a drowned rat…. I was like .. bring it on! I’m happier today and will just get on with things.

Thanks so much for the wonderful messages that have been coming in. They have cheered me up loads!! I will be taking a “diary writing break” for a bit as I need to sleep the next few days. Keep smiling everyone. X x x x

Hmmm… another blow to hear that my body is not fighting the virus. And after midnight tonight I will need to have immuno globulins (antibodies) IV to help me fight the virus for 3 days on top of all my other drugs.

I had a 30% moment during my 2 hour toxic neb this afternoon. My eyes filling up with tears and wanting a hug or someone to hold my hand as I cried. But as no one can enter my room, I wallowed in self pity. Thoughts crossed my mind as to why I have to keep fighting? What would it be like to simply be able to sleep forever and be at peace? Then thoughts of ….. I have to keep fighting. I have so much to live for. Also, realising that other people would want me to continue fighting as I would be letting everyone down if I gave up.

Answer:- Well, I wouldn’t be human if I didn’t go through other ranges of emotions, from fear of dying to crying heaps. However, my balance as I have mentioned in the past is 70% positive, and 30% whereby I experience all other feelings.

I would like to congratulate myself – why? I hear you ask. As I took my last anti-depressant tablet on Tuesday (23^rd Jan) I have been weaning myself off them since December last year. The anti-depressants helped me , and I am not ashamed to mention that I needed them. I feel I have reached a happy medium and would like to move forward without them now.

From spending time at Harefield – it amazes me to hear of other people’s health stories. One that has touched me recently was from talking to a young guy yesterday named Dean. Dean explained to me that he had pain inside his chest, and little did he know he was given 2-3 hours to live! He was rushed to Harefield by helicopter unconscious and remained here for 3 months. Thanks again, to the wonderful staff at the Harefield who did all they could to save his failing heart. Dean was listed for a heart transplant, but amazingly with treatment and drugs has finally fully recovered and no longer requiring a transplant. WOW! Dean I’m wishing you continued good health and great talking to you and your lovely parents.

Harefield Hospital is the most amazing place from all the care and attention of staff, to the specialist knowledge in saving people’s lives. I know that Harefield is part of my life now, and I see it as my 2^nd home. Normally hospitals have filled me with fear, despair, and panic. But Harefield fills me with warmth, friendliness, excellent care and happiness. X x

Question:- How can I be having such fun at hospital when fighting a rare virus – possibility of rejection – and having unpleasant treatments.

Answer:- By choosing to be happy, putting humour into everything, talking to all the patients and staff on the ward, and enjoying my food . …..he he…..

Even though I need to wear a mask when I leave my room – I have accepted my situation – and I’m not letting it ruin my time here. Also …….. any excuse to run riot on the ward and cause chaos …ha…ha..

I absolutely hate the suction I’m having in my nose to get samples deep within my nostrils to test whether the virus has gone. It feels like having an electric current through your nose making my whole body shudder: then having 2 nurses holding my hands and my left knee – which keep jerking upwards, while hearing the sound of anything and everything being sucked out. I assume it’s like liposuction? Oh … it’s horrid! Every time making me cry, then laughing loads at the prospect of how ridiculous I look. A little hard confident lass like me being reduced to a jelly like thing, squealing like a piglet, jumping like a bee with fleas, and crying like a baboon.

One thing I am finding hard though, is that I am staying in the same room that my friend Mervet died in last year. Mervet’s spirit is looking over me I guess, and I have made this room my own now. Girly toiletries, magazines, my healthy food accessories (such as mixed nuts, fruits, crisps, and then chocolate. Ok. I can’t be healthy all the time….. wink wink) Last year, I was loving Nik Nak crisps, and this year, I am loving cheesy quavers, salt and vinegar discos, bacon frazzles and many more!

Oh… I am missing my exercise and will see if I can speak to a physio to get some dumbbells, steps or exercise bike to complete “Justine’s Studio– who made it her own style pampering/fitness parlour” x x

I have such a wheezy chesty cough now which could be the virus, or from the nebulisers I am inhaling. My 2 hour beauty treatments (my toxic neb.. he he) are now from 6 – 8 am, 2 – 4 pm and 10 – 12 pm. My lung function is still dropping – gulp – am I going into rejection? Will I need another bronchoscopy with a biopsy this time? Who knows – but time will soon tell.

Amazingly, I am having so much fun at hospital and I have been laughing heaps! Wearing a face mask every time I leave my room is bizarre but one I am getting accustomed to. A mask has its benefits:-

Oh, and having my nose suctioned to find out results from the virus, what a story! I was squealing, flinching, crying, then laughing. And will have to go through the same again tomorrow. Thank you nurse Sharyl for poking a tube up my nose! x

Looks like I've started my adventures again on a roller coaster ride - anyone want to join me? I realised my lungs were misbehaving and that my lung function wasn't brill. But, I didn't expect to be diagnosed with a virus (RSV) that nobody has been treated with before at Harefield Hospital. And, as my consultant said "Trust it to be me"..... I am laughing now about it. However, if you'd seen me after, I was a blubbering wreck, angry, why me - again, throwing my blue-book across the room (I use to monitor my drugs etc). A feeling of shock - being hit by a 10 tonne brick, and fear again of dying - like when I was diagnosed with LAM.

RSV can be treated with a toxic drug - which I am having at the moment (2 hour nebs done 3 times a day). RSV can lead to pneumonia - which is fatal for me. But, I feel more positive as I am also being treated with antibiotics to fight other bacterial/viruses - so hopefully, I should be ok. The down side on being on a 2 hour neb, is that I'm isolated in my room (as toxic drug), unable to talk and resting still on my bed! And those who know me - will understand that - that is hard for me .....he he. The drug also deposits white particles everywhere, and my floor looks like a snow storm. Hmm ...and my face like the white rabbit in Alice in Wonderland! Honestly, I looked ghastly and ghostly - but I had to laugh at myself!

How did I get RSV? Probably from someone sneezing or coughing by me I was told. And, because I'm immune-suppressed was vulnerable opposed to anyone else.

The nurses/all staff who know me - are saying - typical me for being different. I am also the guinea pig with this virus/drug - and yet again creating a buzz about the hospital with my styory of RSV!

Just a quick note - getting ready to drive to parents - ready for another trip to my other home - that being hospital tomorrow. I feel a bit nervous and anxious again - as although I feel fine - my lung function is having a field day - and doing all sorts of wierd readings. Am I going into Rejection? It keeps getting mentioned - gulp...or am I going to surpass another week yet again and go home and wait for next weeks hospital check up? Well, if I have to stay in - then so be it...bring it on!! More tests again - then c'est la vie. And if I need more drugs/ivs/radiotherapy..well you bet I will still be smiling and joking around!

Also, I have just done my 1st proper dance class in probably over 2 years, hmmm..I've got a long way to go to get back to my level of fitness, physique, and strong definition of dance moves/posture. But, I am determined to get there and strut my funky stuff..he he. Again another thing to aim for in 2007 and I will do it! My new lungs will need to get into turbo mode - to keep up with the fast pace of dancing. And...wow - I never felt out of breath once - wow - that was amazing...I cannot remember the last time I felt this way. Even when I danced in my late twenties...I was still out of breath....with an illness that I didn't even know that I had then....it all makes sense now. Have a happy week everyone, and I will write my other epic diary entry - when I get get to my PC mania world. X

Two cups of tea required and a yummy cake whilst reading this or a glass of red with some cheese n biscuits..he he.

Happy New Year everyone!!..And what a start to this year...a trip to Ireland for a best mates wedding, a friend of mine receiving a double lung transplant, a trip away to Centre Parcs, more media campaigns in the pipeline, and oodles of smiles all round. I'm hoping that 2007 will be a good year, with lots of exciting ventures and happiness that I have yearned for with a new lease on life now.

Let me start with my trip to Ireland and the voyage of a lifetime as I am unable to fly at the moment. A sixteen hour journey by car, ferry, and car again....to the hotel in Ireland. I started to feel nervous about the prospect of spending the night on a ferry and being at sea - guess as a long way and also being at sea overnight. Even since my diagnosis of Lam in 2005, I was anxious of travellling far from home - due to a comfort element being near home and hospitals in the event of an emergency. Also, as I was on the transplant list - I didn't want to be too far away incase I got a call. Ireland has been the farthest that I have travelled to since gaining my gift of life - and..Wow...it was wonderful to have some freedom. Oh for the joys of when I will be able to fly again!...Watch out world!! Oh, which reminds me....one of my brothers said a friend of his had just returned from Spain and saw me in a Spanish newspaper...I'm famous at last..he he!!

The wedding itself was amazing and I was a bridesmaid - and the first time being one too..all glammed up - but the real star was my best mate. Wishing you - Michelle and Simon wonderful years together.

On my return home - a day time trip on the ferry. I took time out to walk around - although restricted to 2 levels and not much of that - unless I wanted to join the crew in restricted access...which had crossed my mind..ha ha. I could put on some bright yellow overall waterproofs and check the lifeboats or steer the ferry back to Liverpool...I thought about asking the Captain - hey there's always a next time! I just need a camera to record my impulse decisions, as I am quite spur of the moment type person. Oh back to the walking around the ferry....I was memorized by the glorious fresh sea air and I took time to enjoy this and watch the waves and stand in my Never Ending dream like story/trance....almost one that may never have been written.

I guess 2007 will be a year of a lot of first time things - first time to Ireland, first time being a bridesmaid, first time that I will be training and running a 10k run later in the year, a wedding of mine (sometime), first time being 34!! (gulp) and many other things. Also a year for a Birthday without oxygen - a full year without oxygen and my wheelchair, a year of no lung collapses and being not being kept alive with a chest drain on permanent suction. A year when I will be able to relish every breath that I take without gasping for air and to walk freely and daydream far away as if I did live in the Never Ending Story.

I will start to plan a wish list soon of things that I would also like to accomplish now that I am alive and tick them off as I go along. I know that I am not going to live forever but have an extension on life - therefore, I would like to now to fulfill all my desires,wishes,adventures,aims and so on.

My Birthday is February 12th and I hope to be able to plan a social event this year - and it will have more significance than any other Birthday I would ever had in the past, and one I will treasure forever.

Are you on your 2nd cuppa now and starting on the Jammy dodger biscuits or a selection of leftover Xmas choccies?..mine's the caramel and nut centre choccie.

Now onto more wonderful news, Emily has finally recieved a double lung transplant and I found this out on my returns from Ireland. I was bouncing around the house with joy...yippy!! Emily is a lovely young girl also passionate about raising awareness and I wish Emily a good recovery.

Part 2 to follow soon - it's late and I need to sleep...but a taster of whats to follow....for those wanting to know..ha ha. Centre Parcs adventure, journalists writing different angles on stories, nebs in a waiting room, running with Superwoman or as the Super hero??...my tootsies...17years amazment...want to know more? Well you'd better check up on lil old me again. XX

January 2007