May 2005

29 May 2005
I have two things I would like to share with everyone today.

Firstly, I am very saddened to loose a friend of mine I met in hospital named Ida. Ida was a true inspiration, and although I only spent one week in hospital with her, I feel like I've known Ida for years. My thoughts and love go out to her wonderful loving family. Ida was the most awe inspiring lady I have ever met, and like me continued to fight her battle. Ida suffered from Cystic Fibrosis and Lupus. I am so priviledged to have shared the emotions of an amazing experience that Ida had. To see Ida beam from wall to wall, and smile like the Cheshire cat in Alice in Wonderland.

Ida's experience, was that she had a shower for the first time in a year! She was wheeled in a wheelchair,and I cannot forget her happiness and smile, in actually going under a shower - as opposed to being washed in a bed. Ida was over the moon and could not stop talking about how wonderful that was, and I am glad I was there to share her happiness.

I went through a very emotional roller coaster of emotions there, and we helped each other through the lows...and had lots of laughs too. Ida you will always be in my heart, and you told me that I will get through this. God Bless You. XX

 The main aspect that I would like to share with you all now is the importance of carrying a donor card. I understand it seems a scary concept - myself included (not now though), and no one wants to think of times ahead. However, sadly - when our bodies are at rest, what need do you have for any of your organs? By being a donor, can make the difference to one or many people's lives to continue having a life - and giving that person a second chance no matter what age they are.

The reality is - if I do not get a donor, then the clear and simple message is - I will die. I do not think that this will happen to me, as I am being more positive than that. But, again the reality is that hundreds and hundreds of people die each year waiting for a donor (some cases it may come - but too late).

My message is please look on my website under USEFUL LINKS, and look at NHS UK TRANSPLANT - How To Become A Donor - then there is an option where you can REGISTER NOW. It will take seconds to do, but, will give someone a life for your compassionate seconds! Thankyou.

I wish you all a good day, filled with all my love, and still thankyou for my messages of support and from all over the world now...I feel very special and very loved from each and every one of you. XX

26 May 2005
If anyone looked at my website yesterday, my diary got deleted...so, I will try to retrace my thoughts again.

I was mentioning about my trip to Harefield Hospital where I went to have a talk about having a transplant. It was a very informative day, and a chance to meet some of the team involved before and after having a transplant.

One of the lectures was from a Dietician, and I was pulling a few sad faces when told the foods that I would no longer be able to eat (after the transplant) - reason being as they will affect the drugs that I will be on (and for the rest of my life). Foods such as:- boiled eggs, mousse, ice-cream, grapefruit, smoked salmon, sushi, pate, brie/camenbert type cheeses, prawns/shellfish..(and some others)..boo hoo. Oh well...I decided to start my new lifestyle now, to get into what I can eat. But....please don't tell anyone...I ate some Ben & Jerry's ice-cream last night (Phish Food flavour - it was yum!).

The only part of the day, that upset me - was going to the Intensive Care Unit, where I will be after the operation. I saw someone with all the chest drains in/tubes from hands and neck/ and a tube in the throat to assist with breathing. It looked awful, but, that is what I will go through - and I want to - and I will get better after this. I was fighting back the tears, as it was quite an emotional journey going round, and when I left the Unit - the tears flowed.

From that, I was put into a room, to meet a surgeon - who was going to remove my final stitch. He came in, laid me on a bed, yanked the stitch out - without pain relief...I screamed, then he said all done, and goodbye - to which he left the room!  Then as simple as that, I got up, back in the wheelchair - and off to lunch. I can still walk fine...but for long distances it leaves me breathless, which is why I sometimes need a wheelchair to help (incase anyone wondering).

There was also a talk from a man who went through a double lung transplant, which was interesting hearing his story. I am starting to talk to other people who have had transplants, and this really helps - as it is so alien to me.

I also would like you all to know as to how I'm feeling, about 70% of me is upbeat and positive, and 30% where I experience all the other emotions. Even though, I write some news on my website, I am also writing my own personal diary - which is what I would like published at a later date.

The only other concern I  have at the moment, is fear of my lung collapsing for a third time! It seems linked with when I have my periods, and my cycle is next week - so that will be a very scary week for me. The good news, is that I am prepared for what needs to be done and have coached the relevant people what to do - if this happens. I am getting stronger, and I only hope it does not happen - if it does - it will be the fifth time (my right lung also collapsed twice many years ago).

Please keep your fingers crossed for me please - thankyou.

Love and Best Wishes to all the messages that are still coming me - it always makes me a smile! xx

22 May 2005
Hi there everyone, hope you all well.

Just a little note today, to inform you all of my progress (not a long message today…gosh, I wrote so much on the other days). I feel just ok…most of the time I am upbeat and positive, and it is great to see people – which I have recently – and it keeps me sane! I have shed some tears along the way, and I am still waiting to have some stitches removed from when my lung collapsed. It has not been straight forward, and I have been told that I will need a local aneseptic to get the last stitch out!

Oh…the tears along the way have been from the stitches being removed, as it hurt whilst I was having my skin pulled…don’t want to go into too much detail (for the faint hearted)..tears shed as my friend Ida is not getting any better in hospital, and then a sudden outburst of all my emotions from the experiences I have had in the hospitals – which no one can understand. I even consoled an elderly man who lost his wife in the bed next to me, and it hurt me very much too – to witness this.

Otherwise, the tears gone – I am back smiling again, and looking forward to eating my dinner later tonight…my appetite is still good! And, recently there has been a very generous amount of food/cooking come my way – so thank you to everyone who has assisted with this!...yum…yum..

Speak soon, love to you all xx


19 May 2005
Hi there again everyone..today, I am on a role...feeling quite upbeat and positive. You know, I am kinda getting used to being on oxygen 24/7...with tubes up my nose...and a long tube that follows me wherever I walk...it has come part of my life now. It will be this way, until my transplant...and like everyone else...I am also hoping that it happens sooner rather than later.

I missed some bits of that I wanted to say yesterday.....as I have made everyone aware - that I want to get my story out there. However, I also want to help others with rare illnesses, and raise the awareness of Lam (as it is so rare)...and also the importance of people carrying donor cards!...Maybe I will plan a mission to be some kind of Ambassador for awareness of donor cards/rare illnesses - who knows...and then on the side - continue with my painting/writing....so watch this space! And if any other companies are willing to advertise donor cards/information - please say so on the guest book. Esporta (the company I have been working with)- are wanting to do so - thank you for that! I am awaiting a response from Harefield Hospital - as to where I can get all the information from.

I really want to thank my Mum and Dad, for all their love and support...and...praise them...for providing me with home made yummy meals....my clothes cleaned...the five star treatment that I am receiving....ha ha!...But, I really do appreciate everything that they have done/still doing for me. Also, the support from all my other family and friends. I cannot praise enough the support that I have had from my fiance (Jon)...who has been my rock, and supported me all the way. Jon has been with me every night at whatever hospital I was in...and has seen me every day, even at my parents!...I know that my illness is 1 in a million - but Jon is one in a million - and I am the luckiest person on the planet!

I am aware that people are mentioning about raising money...and best to keep an eye on the website for this...and help will be needed for my after care and such like...I am also thinking about setting up my own charity too for LAM....gosh...I will be a busy bee-eh?

Some people have mentioned that they will want to see me after the transplant...and that will be a no at the moment..as I will be in intensive care - and only the family will be allowed - so, again, refer to my website - as daily updates will be there on my progress. If anyone is wanting to visit me, I am staying at the address details...at the bottom of the website page. I cant guarantee how long I will be able to see people for - 5 minutes or 1 hour...but I will let you know on the day- so please do not be offended if I say that I need time alone (it may be that I will feel tired or have a change in my emotion). Also, any visitors must be infection free - no colds/coughs etc....And, please let me know - so, I can schedule in a diary who is coming - so not to many visitors on a day, thank you.

Well...thats all for now...I am going to look at my new messages in the guest book - which will no doubt - put an even bigger smile on my face- and continue to give me the inner strength from all this support- and win this battle for all my supporters too!

Oh P.S....thanks to my cheeky brother - Spencer...making that quirky remark about my daily hair routine underneath my main photo......just as well, I have a sense of humour...and just for those querying, the pink hair...it was in my dancing days!

18 May 2005
Hi there, this is actually Justine writing...not my Dad..who has been great in keeping everyone up to date - also thanks to Spencer (younger brother) for organising the website software.

I want to personally thank everyone for their kind words on my guest book - I am so incredibly touched - and sometimes feel like crying with all the support I have received - and still every day. I know, that this has shocked everyone - and I cant believe I have this 1 in a million rare disease! I want you all to know, that I am determined to beat this - and not croak before my time comes...and like everyone else...I am hoping that I get my transplant sooner rather than later. Its very scary time, as it is the waiting game - and I have no idea when that will be.

Those who know me well, know that I am a strong, full of beans, motivated and gutsy girl.....and really headstrong!..This is what I believe will pull me through!...And of course, I wouldn't be human - if I didn't experience the other emotions...the scared/frightened feelings...fear of dying...tears...lots of...and when those spells occur...I feel better afterwards...it is good to let it out. I normally bottle up things/emotions...and to be honest, I probably could cry for weeks...but, I am staying more positive than that!

I also have a very special message to a lady I met in hospital, when my lung collapsed for the 1st time - about 6 weeks ago now. The message is to Ida Victor (and her wonderful husband,son and daughter). Ida is also very ill, and Ida really helped me through the roller coaster of emotions that faced me in the hospital...from being told, that I have a rare illness, not able to have children, and that 1/3 of my right lung wasn't working (it was my left lung that collapsed-this time). Ida is the most amazing lady I have ever met, and gave me the best advice being....."acceptance is the hardest thing...and once you have accepted, then you can move forward".....and now that I have accepted my illness, I am moving forward - and thinking ahead of things I want to do. These things are to do a website (done- and still being completed), get on TV - to tell the world of my condition, publish my diary (which I am doing at the moment)- and if anyone knows a publisher please let me know - and also a contact in TV-thanks!!, continue painting, and help others with rare illnesses. Also, a day does not go by, where I do not stop thinking about Ida, I just wish I was better now - and could visit Ida in hospital.

I only started my diary 5th May...and I will continue up until my transplant, and when I am better - would like to continue after the transplant....I wanted to share a few clip bits for everyone.....

Pain..pain...and more pain - time now is 2pm - still wincing with pain a bit - getting more pain killers now. I have been so drugged up today - cancelled seeing people - didn't feel right.

Jon (my fiance) and I talked - the realism of me living - is having a lung transplant - thats scary! But, i will be OK + Jon said, he is looking forward to me having one and I said, so am I! Hmm...not quite in the same context, as say...I'm looking forward to buying my favourite Ben & Jerry's ice-cream - eh?

I feel more positive today - so much to take in...it even effects my sleep. 2 nights ago - I just couldn't sleep - awake with things on my brain + all my fears...I was a Zombie the following day.

'The call' finally came - I am on the transplant waiting list, and tears of happiness flooded down my face.

Well....this is a lot of stuff I have written - and I just want to thank everyone again for all the support - it really helps - and keeps me smiling!...Please read my website as often as you can, as there will be daily updates all the time - and the website will continue to expand.

You are all fantastic people and thank you for everything to date!...Much love and best wishes - 

- Justine xxxx - and a personal thanks to all the staff who have looked after me so far - at all the hospitals I have been in.