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Xmas time and brand new decade...

Posted Jan 01 2010 12:00am
I haven't blogged for a week or so which means there's a fair bit to waffle on about but I will try and be as concise as I can! In brief, Christmas was fab and simply invloved spending time with my family and friends. In terms of gifts, many of the ones I gave were handmade with recyclable materials and they were appreciated! I realised that next year I need to factor in much more time to prepare, as I became exhausted towards Christmas with it all and battling the symptoms of piggy flu jab. My home also became a factory which again, I hadn't given much though to, making if difficult to have visitors around because it invloved packing and unpacking materials all the time which I don't have the energy for!!

I was very lucky and got lots of useful gifts and treats!! I also got some IOU vouchers to redeem which is great!!

Wow! It has been one amazing year for my family and I. Lots of highs and lows, a real rollercoaster. I have had so much fun but sadly I have also experienced much pain, disappointment and sadness. No matter what, I had my family and friends beside me and thats what helped so much to get me to where I am. But if I'm being honest, where I am isn't quite enough. I still have a long way to go, my recovery is very long and invloves a lot of hard work and self motivation. It is nice to see the rewards on occasion. 2009 has made me learn to accept support and aid. To discover and find that there are just some things that I cannot battle against alone. Being so fiercely independent has made it difficult for me to be settled with my limited mobility, acute breathlessness and low exercise tolerance.

Having my lung transplant has been life changing despite the fact that my lung function is devastatingly low. Can this be improved? Well, its unlinkely. Maintaining a regular exercise regime will help it to remain stable but it seems it won't increase it by much. Sadly this is due to the damage to the lung initially after transplantation and the subsequent complications I have endured since. It was March 2009 that I was diagnosed with PTLD and started a 4 week course of Ritixumab which then is thought to have led to my diagnosis of heart failure in April 2009.

Since then I have had problems with gaining weight but over the summer I gradually reached my target. With lots of events planned I wanted to be as fit as possible so I could enjoy attending gigs and days out! Luckily for me I made great progress and was able to have the stamina to get through some of my planned activities. Factoring rest into my life was difficult to remember at first, but now I know my post transplant body well. Rest has to be part of my daily routine or else I just wither and get very lethargic and weak. Now I am aware I can maximise and optimise my days and reduce extended periods of being unwell and poorly.

Going to Cyprus was a mega highlight. The fact that I could once again embrace my number one passion, travel was just superb! Particularly air travel. Many of you know I have worked in the travel industry for nearly 10 years now and have forever been a keen Geographer so this was a very important signal in my recovery journey that I was progressing. Yes, it did invlove a lot of sweet smiling and uber-positivity to get the docs on my side that it was a fab idea. It was so worth it! It was an odd holiday for me, because I am usually very active and this holiday involved me being very hotel based as I get so tired. In such stunning surroundings, it was surprising how easy it was to enjoy lounging around. It wasn't easy but the holiday was made seamless for me so that I was not stressed by the transitions in the journey.

Having opportunites to share my journey through the media has been very important to me this year. Perhaps I had not done all I had planned to regarding increasing awareness of organ donation, but I very much valued the piece I did for the Mirror newspaper and my own fundraising with a sponsored tree hug back in September. Thanks to all that supported me with that fundraising!! In total, over £500 was raised and split between LLTGL and Clic Sargent Cancer Care for children. This year LLTGL won best new charity of the year at the Charity Awards 2009 which was great :-) The 'save jess' twitter campaign gained a lot of celebrity support and found its way into number 10! How amazing is that.

I think the best ending of the year was hearing that Jess Wales finally got that long awaited lung transplant and is making good progress with her recovery. If anyone knows, I sure do know that recovery can be very successful but equally it can be a rather treacherous time as the body has been traumatised and is in shock. Literally pumped with an array of daily toxic drugs, its hard going. In my case, I had to re learn how to walk, write, speak, eat, my vision was affected and as for sleep...well...that remains a huge problem. I did have an array of serious post transplant complications and so it is unlikely that it will be the same for others. From what I know, Jess has a strong family and great support from friends including celebs (oo err!!) so that will help pull her through. Like me, she was terribly weak at the time of transplant, to the point where you can be removed from the list. This again makes recovery even more fragile and lengthly. If there were more organs available, then waiting lists would be shorter and life expectancy would lengthen.

Change is happening and this is mainly down to readers like yourself. You are able to talk about organ donation and transplantation and how lives are literally changed as a result. Hopefully my journey and others will help people to learn and think about joining the organ donation register.

I am hoping that 2010 brings the gift of life to so many others and that I am able to increase my strength to keep fighting on.

I will post some pictures this week in my gallery that show some of my highlights from 2009. I have popped on photos of me pre transplant, recovery and post transplant. It even amazes me just how far I have come.

My thoughts at this time are much with my donor family as they are experiencing loss. I hope that they find some comfort in that their loved ones altruism has literally enabled me to be here typing my blog today. I thank them so so much!
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