October 2006

October 2006

29th October

This week I have been doing so much walking that it has left me feeling exhausted and needing at least 2 hours rest...so I can allow my body to re-coperate again. I am now over 3months post transplant, and how quickly my life has changed - for the better!

I am pleased to see my good friend Olly - for those of you who have been reading my guestbook messages - will know that he has been travelling for a long time. Also some other friends who have come over from Australia too - it has been wonderful to catch up and has left me smiling.

I'm also happy that I don't need to go to hospital tomorrow...it is nice to have a relaxing Sunday and not to worry about Mondays hospital visit.

Again, I have been reflecting on all I have been through - and some wonderful people that I have become friends with..and in due course would love to meet. It's amazing how excited I used to get to recieve messages on my guestbook...when I was in hospital...simple things like messages would brighten my day. Maybe 2 minutes to write a message and a days worth of happiness to me!

My weight is all good now..I just need to keep the gym work up to keep fit and toned.

Have I noticed any side effects yet from all the drugs that I'm taking? Not sure whether I have mentioned this before or not. Anyways, one of my concerns was to get what's called a "moon face" post transplant by which your face swells outwards. I have noticed that I have put weight on again and my face too..but I do not have the round face. Also my hair has been thinning...poo hoo...thank goodness I have lots of curly hair. So, if my hair did ever fall out...I would make wigs totally fashionable, and have one to match all my varied clothes..ha ha!

Speak soon and have a good week everyone. Also well done to my friend Gemma who ran to raise funds for LamAction today (29/10/06). XX

24th October

I will be brief..as all is good and well, phew!! Read latest news regarding more about my visit to Harefield. I am feeling relieved and happy that I can relax and get rid of my angst now. My Mum came with me on Monday and I did the usual 'Hello' rounds and introduced my Mum to other patients - which was nice as I have mentioned many people and now my Mum has an idea who these people are...and not all my imaginary/invisible friends..he he.

My hair never got done on Sunday..but was done today, and now I have bright red sections with a browny red base all over. Also, my hair was straightened today and I feel very glam with sleek shiny colourful straight hair!

I feel happy with my new look - although as soon as I've washed my hair..the crazy curls will come back!! I have also purchased some new clothes/accessories/boots/make -up for a change of image - as you all probably know now that I like to do.....Madonna...who's that?....Justine has the new looks move over....except I don't have her house or millions. Well....I'm very content with my own life..and money doesn't buy you happiness. X

20th October

Even though my week has gone by quick and I have tried to keep my mind pre-occupied from Monday's results....yesterday I was on a low. I am left feeling petrified, scaredified and worryfied (grammar poor here - but I don't care) and also I haven't been to the gym this week. Oh well...I will try to go to the gym today....don't worry though as I'm still smiling (and I could have a positive outcome on Monday). Yeah..the weekend is almost here..have a good one all. X

19th October

...."Because I can!"...What is this about?...."Because I can"?...Hmm, well it seems that now with my new lease on life I am going back to places that previously I was unable to view because of staircases. I liked this little boutique shop in Essex which is on 3 floors (no lifts). Last time I went in there (a year ago with my companion - oxygen bottle and tubes), I felt sad that I was unable to see all the other goodies. However yesterday a friend and I went to have a browse. I really wasn't that interested to stay on the ground floor...as I was eager to go up the stairs...so I turned round to face my friend and say..."I'm going upstairs....BECAUSE I CAN!!"..in a cheeky and happy/excited voice...then puff of smoke later, and I was gone! 3 floors up and 3 flights coming down, I turned to my friend yet again and said...."See..I'm not out of breath!"...Smiling away I left the shop...and felt like I was dancing on fluffy clouds...feeling so happy! X

16th October

What a day, an early start..loads of traffic..was I going to make my 10am appointment - would I need to re-schedule? No way, I don't want to delay this...phew I arrived 10am on the dot! Feeling anxious I went to a part of the hospital I haven't been in yet, unfamiliar faces so I felt on edge (when I get to know staff - I feel more relaxed). The lady who was going to look after me for the hour said that she will be with me within a few minutes, quarter of an hour later staring blankly at a wall and with a man next to me attached to tubes...gulp..what was going to happen to me?

I went into a room fully air conditioned which was nice, and very white walls with lots of technical equipment. It was explained that I would need to inhale a radioactive nebuliser with also a nose peg on my nose and simply breathe in this product. Five minutes passed very quickly - although my nose was hurting from the peg, and the lady was making me laugh - then telling me not to laugh..!!?? To my right was what looked a large wide lamp shade almost as big as one of those hair dryers you sit under whilst your hair sets. I asked for a hairdo...sadly the answer was "no"..I had to try my luck..he he. The purpose of this was to in the event I removed the nebuliser before the time required - this would inhale the radioactive material. Hmm...the only way I can describe the scan was with a very large polo mint wherby my legs went through and a large square block ontop of my upper body. The block gets moved down so that it presses right up against my chest. Not good for someone who is claustrophobic - like me! And here I needed to stay still for up to 30 minutes...still...me?...No chance....I managed to talk and move my head sideways to watch the screens taking images of my lungs. Every time I moved my head back to a centre position, I kept bashing my chin and mouth on the block..silly me..just couldn't stay still - was curious watching the screen. This was the first time I was able to see a pair of lungs - unlike the 'slice' of lung I used to have! From enjoying the air conditioning...I was getting colder and colder..and felt my arms going blue - but nowt I could do, sandwiched between a bed a large block...oh well.

So, that was my day - I booked myself in for the following Monday 23rd October, to which I will find out the results. A very anxious week now ahead of me, but there is nothing I can do - but just get on with things. I went around afterwards to see people and felt a real happy and positive vibe from staff and patients far better than my visit on the rounds last time. Also people were saying how well I looked - which helped me today, and lets hope this means that I am well and not going into chronic rejection.

But, the day doesn't end there..oh no..I drove back to see my G.P, wherby a nurse was going to give me both the flu and pneumonia jabs. The icing on the cake for me - to finish off my day.... a jab in each arm with an "ouch" as the flu jab went in (it stung aswell) and another "ouch" when the pneumonia went in. Poo hoo...but, I left the room smiling...even though the nurse was worried that she hurt me and said I was putting on a brave face. Maybe I was - but that's me...I am just happy that the day is nearly over....and now the hardest part is the week ahead until next Monday. Hope you are all still with me..ok I've waffled enough, so here I will say "cheerio" and speak soon. X

15th October

My scan is tomorrow - I am ready for it...just the result I am anxious about. I will be so happy if I am clear from chronic rejection...but, guess - this is a taster for whats to come in the future (to keep monitoring if I go into rejection). I have been feeling over the moon recently and enjoying life, gym, healthy eating (back to eating bird seeds again..ha ha), and great seeing my friends again....Oh..and doing what women do best...SHOP!!!! ..he he.

So new clothes/accessories..just the new hair look this week to look forward too. Some people have said to go natural ie: brown...but hey that won't be the real Justine. I need colour and vibrancy of life!

Also I am part delighted part sad to hear that a guy I've become friends with, James -who is waiting for a double lung transplant had 2 calls in one day on Friday 13th!! Both which turned out to be false alarms. But, I strongly believe the ball is in motion for him and hopefully my Christmas Wish is starting too, and he will get lucky this year. Best wishes to him and his girlfriend Kim. James wrote to me following my appearance on This Morning TV in 2005, and got added as one of my MSN buddies to which I chatted lots...then James dominated the chat whilst I was on life support and left me messages on my website. But...good for me and not so good for them, I am making up for lost chat time!! Oh it's great to talk!! And it reminds me that one of the doctors looking after me for months never heard me talk, and the time I did...made a comment how cheeky my personality was and loud..he he! Jon was happy too that I could talk again, although I'm sure he liked the quiet times - as now forget "Chico Time" (last years contestant on X-Factor)..it's "Justine Time"..... X

12th October

My Christmas Wish List

For all the people I have met and become friends with to get their heart/lungs or both this year. For all people suffering with ill health/rejection to get better this year. For more donors to sign up this year...please sign up through my website..it will take seconds and give years to someone else. Then I will be the happiest person alive! This would be the BEST Christmas gift ever! Thankyou. xx

As to me - I have been feeling very happy and amazed at the turn around new lungs have made to my quality of life. I was in the town centre this week - walking in/out shops for about 2 hours, then I decided to sit down on a bench. Here, I reflected on what I had been through, and how great it was to simply walk again and breathe - the basics we take for granted.

I am still anxious regarding what my results will be following my scan on Monday (they will take a few days to get outcome). Oh well...the wait is the worst..not long to go now. I really don't want radiation therapy - and I really don't want to be in hospital again especially for a 3 week stay! Hmm..not much I can do - but sit tight and wait. Please all keep your fingers crossed for me.

On a positive side, I have reduced my anti-depressants - my choosing - and I also want to come off them completely at some point. I am finding my character coming back again and gaining more inner strength. One day soon, I want to be 'ME' and without drugs to control my emotions. When I was diagnosed with Lam in 2005, I started anti - depressants then - and decided to come off them as I gained my strength and acceptance with my situation soon after. I know that I have gone through more than one should, but, I feel I can cope much better with things now - so slowly weaning myself off again.

And finally....another hair change/colour is on the horizon..and I am looking forward to going back to my hairdresser again instead of DIY hair dye packs!! Hmm..reds/violet hues/browns.....hmm..who knows??..Watch this space..he he.

My day so far, 17 tablets/temperature/weight/lung function tests/nebulisers x 2 to do now...then later.....gym...rest and a walk in town. Have a good day everyone. From a happy Justine. XX

4th October

I am left feeling confused and a little scared after my check up on Monday. I know the Rejection word has been mentioned to me a few times now, although I feel very well. I'm not sure if all know about my anti-bodies forming after blood transfusions in February's emergency operation. Having too many anti-bodies also nearly took me off the transplant list too, as it meant that I could easily go into Chronic Rejection.

My consultant specialist is bewildered that still my lung function is not going up, and concerned that chronic rejection could be kicking in. All my other results show things are ok such as x-ray, bloods, and even my CT Scan last week was apparently good (phew). I have been informed that I will need to have another scan called an Aerosol Scan (wherby you breathe in something through a nebuliser for approx 10minutes, then have a scan). This is more indepth than a CT Scan as it can check if any obstruction of small airways - which could be why my lung function is not increasing. If anything is then detected, the only treatment then is radiation for 3 weeks stay in hospital.

Chronic rejection needs to be treated early, as if left and develops - irreversible and harder to treat (which is not good news). I guess I feel reassured that I am being closely monitored and I was aware about the possibility I could go into this type of rejection prior to the transplant. Of course, I remained positive with this..after all I've been through already, just another element to take on board with my extraordinary journey. Although, my consultant did say that he wants me to leave clinic with a smile and not to worry. It could come back and show that things are ok with the Aerosol Scan, and maybe that my low lung function is just how things will be - but, that I am doing exercise and eating well - and that's how it could remain.

I am now waiting for news of when this scan will take place, and this will be the final breather for me if I get the all clear. So, until then I have mixed emotions, it's like having to wait for crucial news of my health ...I hate the waiting game! Blah!

I also did the usual rounds of visiting people and staff, and there seemed a lull in the air, hearing that another patient had died who I knew, and some patients not doing so well. Hmm, then I also thought about Mervet again and what I saw from her chronic rejection - which frightened me. I really hope that I am ok. It also has got me thinking that I may not live long even with a transplant if I do go into this rejection, and that I just don't want to die. I am feeling so happy with life again, and want to keep this high forever! But.........I am a very positive person, and if any bad news - I will beat it and continue to pull through against all odds that throw themselves at me! I just will!

I still see Mervet's face when I go to sleep - that's quite hard to clear in my mind...so hopefully you all can understand how I feel and what I'm going through right now with what I have been told.

Woo...woo...please don't all think I am down in the dumps...just a lull, but, I am still happy and eating well (lots..he he), going to the gym, seeing friends, and enjoying life! I also have been painting some new canvasses for our house, I have done 7 paintings so far and will do another one today. I am still in talks about updating my art page to display new works of art and start doing commissions too.

Justine's final thought for the day (move over Jerry Springer)..Don't worry about yesterday, don't worry about tomorrow, enjoy today and be happy! X