September 2006

September 2006

28th September

From sad to happy...Why?...Sad that Mervet actually passed away after I left her room on Monday and that her brother was not able to say goodbye. To happy....Why?..Well I recieved a large bouquet of flowers - sunflowers. I did an interview for a local newspaper and mentioned how much I liked sunflowers and that my wish if I had died would be to give everyone sunflowers seeds to plant and remember me by. Sunflowers are great, flambuoyant, stand out, energy like the sun and last forever - as you can re-plant the sunflower seeds...so are never ending, and I see myself as a sunlflower...and that my legacy will always go on.

To my joy today I was very happy and now I have sunflowers in vases in the lounge,dining room and bathroom...it has cheered me up!! Thankyou. XX

26th September 2006

Mervet had a transplant about 5 years ago and suffered with chest infections and also with shingles a few times. Last week when I went to see Mervet, she was suffering from pseudomonas chest infection - which I've had and still being treated for. I saw her Father first on route and he broke the news to me, I was shocked and he allowed me into the room (which I didn't expect). I thought I would be able to talk to her - but she seemed unable to recognise anyone and was barely breathing. A very distressing sight and seeing her Mother hold Mervet like a precious doll, and not letting go in fear of breaking. Her lungs had gone into chronic rejection. I was actually wanting to talk with her and deliver an angel to look over her and keep her well. However, she was going towards the angels as I entered the room. My heart goes out to all her family and friends. I really feel for her family, and I hope her brother arrived in time to say goodbye (he was travelling from Saudi Arabia). I didn't know Mervet that long..but long enough to form a bond and especially with Parveen, her mother. We used to chat every day when I was in hospital. Life is so cruel sometimes. I'm still upset and in shock, but glad I was able to offer comfort to the family and wish Mervet ...God Bless. X

25th September 2006

Is news of my health and progress really important when someone I know is dying? This is the 3rd time that I got close to another girl this time at Harefield Hospital. I always do my rounds after clinic to say Hi to staff and patients who I know are still there. Nothing prepares you from seeing someone last week talking to you, to a Mother in bed holding her daughter in floods of tears..saying "She's dead" over and over.

I am so sad and was not prepared for what I saw. No words can express loosing someone and witnessing them on the way out. Her name is Mervet, so beautiful and 2years younger than me. It reminded me when I was so poorly in February and saying my goodbyes to my family and Jon as I could barely breathe. Mervet was not able to recognise me, I held her hand and said, "God Bless".

What a shame and a waste of life. It really does go to show you, life is short..live it..don't dream it and fulfil it! I can't speak anymore..too upset. X

20th September 2006

I really feel that time is flying by so quick and it will be Christmas before we know it! I am a little nervous for my check up next week, as the words "rejection" have been mentioned to me from Harefield...gulp. Next Monday, I will be having a CT Scan done to check the insides of my lungs, as my lung function has stabilised again and not gone up. I keep dreading every time I go for a check up, that I will need to stay in hospital...surely next Monday may become a reality.

I hope I am not going into rejection already, I am doing everything by the book...but I guess if my lungs are going to reject - then there is nothing I can do. However, I am aware that it is treatable aslong as it is caught early..so whatever happens, I know that I am in safe hands at the Hospital.

Last year, I was given a mug that said "I will survive" and I remember drinking from the cup every time I had tea/coffee and saying to Mum that I will be the one in a million who will survive! Well, recently...I had my first tea in this cup again...and it was the best cuppa ever and so significant after all I'd been through! It bought joy to my face.

Hmm..I think a hair colour change is due....hmm.....maybe in the next couple of weeks...I'm thinking cherry/pink sections....who knows...will keep you informed and with a piccie when it's done...he he.

I've got to do my lung function tests now and nebulisers..blah..speak soon. X

14th September 2006

Hello everyone! Finally the long awaited update from my walk at the Harefield Hospital. It has been a few days for this update due to sheer exhaustion from the walk and the busy week I had leading up to it. Too many early starts for interviews and with my training for Sunday's event. However..better late than never - eh?

The night before I had intended to get an early night...but what with good TV and a load of tablets/nebulisers..it was almost midnight before I realised...cripes I'd better get to sleep! I slept well, and woke up early as usual panicking I don't have much time to get ready and leave on time to arrive prior to the walk starting. So breakfast scoffed, hair washed...make-up done in the car...and my accessories packed (cowboy hat, sherif's badge, and holsters with guns)...yeeha...I was off. Have any ladies tried to put mascara on whilst somebody is driving?....I'm suprised I didn't end up having 2 black eyes..he he.

I felt so excited about walking and had a real buzz inside me and wanting to finish well. I had the biggest smile...Cheshire cat from Alice in Wonderland...no chance, my smile would out smile yours! When we arrived at Harefield I met up with my parents and my physio lass. All registered and time to mingle....I was able to talk with some nurses, patients and other staff at Harefield.....oh...and of course check out the stalls..especially the hamburger stand!!...

There must have been about 1000 people at Harefield and approx 800 runners. I was number 752...just incase you needed to know..ha ha. The start was with a patient playing some drums and then we were off. It was such a hot day - but I mastered on through the heat. In parts I felt a little breathless only due to the fact I need to improve my lung function...as I need to get fit again...so I slowed down my team..oops...but they waited for me (thank goodness). I can't tell you what a wonderful experience this was, to be able to walk again without nasal tubes and oxygen and minus a wheelchair. I was beaming like the Sun! I knew the end was near, and I thought it would be fab to try and run the last part...ok so it was 50 yards..but 50 yards more than I could do for the last 18months. I saw the finish line in view...so I was ready for the challenge...and I heard cheers as I came to the finish point.

I did it! Yahoo! Yeeha! Hurray!

And then I got cornered to do an interview to be broadcast within the Hospital so that patients who were unable to come out - could see the event and hear people's stories. Can you hear my stomach rumbling? Well it was during the interview...and my love of hamburgers was at it's peak.....mmm...follow the BBQ smell. A gorgeous cheese burger with ketchup, BBQ sauce, and American mustard......heaven....and no talking whilst devouring.

I was so proud of Jon running the longer event and coming 4th - what an achievement..maybe I will get to be a fast runner and pip him to the post? Who knows. It was nice to have my parents and Vicky with me too for extra support and laughs along the way. My eldest brother turned up aswell with my Sister-In-Law and their children....who ended up playing cowboys too. The rest of the day was with displays of dance/karate and tug of war.....So goodbyes starting and farewell departures..time to go home...and then I had to prepare for the next day (Monday) - my check up..gulp.

After such a great and busy week - I was still shattered (another early start to get to Hospital), and knowing that more than likely I would need to stay in Hospital for further checks. It is so hard when you are in the real world to have to go back in...I was not a happy bunny..aww. However, one must go on, and I did all the tests required except the CT scan (was told didn't need it - that was good). When my time came to see the consultant...this is when I would find out if I need to stay in and have a broncoscopy. My goodness...I was not expecting to hear that my lung function had improved, and that I could go home...yea..happy me! I still need to go for weekly check ups now on Mondays..so I hope all goes well then too!?

Thank you for everyone's donation to date - I am still collecting funds, and it is not too late to donate through my Justgiving link.

Other news, I joined a gym yesterday and I intend to go 6 days a week to keep my lung function going up and working my new lungs. I have been catching up on sleep this week..and intend to keep the rest of the week relaxed and not to overdo it like last week.

Bye 4 now..phew..that's a long diary insert. X

9th September

My walk is tomorrow...hip hip hooray...I'm sooooooo excited!! My Mum is doing the walk with me, and Vicky who did my physio at Harefield is also supporting me on the walk. I have told Vicky that she will have to keep up with me..he he..I guess she wants to witness her good work....or simply to hang out with the happy smiley me. Jon will be doing the longer event and running the 3.5 mile.

It has been a very busy week this week - what with all the newspaper interviews and appearing on This Morning TV show - which was fab....I have some photos to put on the website aswell. I think next week will be a quieter week...I need to rest up. On Monday, I am assuming that I will stay back in Harefield Hospital for my next check up - which I am not looking forward to. When you are finally released into the real world, it's hard to stay in hospital again..oh well. I only hope I still have infections and not rejection already (gulp).

Wish me luck for the walk. XX

7th September

I am still in training for my walk on Sunday, and yesterday I walked on a treadmill for 45 minutes and then did some arm weights. When I came home I was shattered! I need to do exercise every day to improve my lung function...I really would like a day off....poo hoo...guess will have to get on the exercise bike we have borrowed in our house.

I also had some pampering treatments today, which were lovely! (See Thankyou Page). I had an hours long facial - which I have never had that long before. After the facial I felt like I was sinking on the bed...as if I was sinking and melting away from relaxation..something I really needed. I also need to have some massages, after 6 months in hospital my body is still very tense and I need so much unwinding - its unreal.

My weight is much better too, I think I look healthier now - and just need to tone up/pamper up - always..he he...and change my hair colour...another...he he!!

Thanks for all the support so far towards my one mile walk, please keep sponsoring me - means so much as the Harefield Hospital wants to use the funds to purchase a new scanner, that will help diagnose illnesses.

Speak soon. XX

5th September

I have wanted to mention from my check up at Harefield (last time) that I saw pictures of my lungs on a cat scan. Boy, I was so shocked and horrified...there was almost nothing left of my lungs. The right lung only had like a slither of lung tissue, and the left showed a tiny amount of lung left full of cysts and looking like a spiders web. The web effect was just the lung tissue - and the wholes were all the cysts which were large and all over the lung space left. Both lungs also showed collapses too. Wow - that was surreal, and I was amazed that I was also still alive from seeing the scan.

My check up yesterday (4th September) was ok - I guess. Although I have been keeping well, my lung function is slow on the increase. My chest x-ray showed a cloudy effect - maybe the infections, and I have been told that more than likely I will have stay in hospital on my visit next Monday. The reason for this is to do a bronchoscopy to look inside the lungs, and also a cat scan. Regarding the MRSA, although the 3rd test came back negative...I need 3 clear sputum samples in a row without being on my antibiotic nebuliser (as previously it was in my sputum that the MRSA showed present). I also was not informed that being on the nebuliser will affect giving an accurate result as the drug helps treat the chest infections/MRSA. I need to complete treatment first - then the sputum samples can be tested. However, my treatment will go on until next year Spring sometime...bar humbug! This means I will still be isolated every time I go for check ups.

Moving onto happier news, I went to a Country and Western wedding at the weekend...yeeha!! What fun! Some pictures will be included on the website.

I am also getting very excited for my walk this Sunday, if you haven't sponsored me - it's not too late. I have been in training...so hopefully I will do well.

Have a great week and weekend all. Xx