Jussie sails with Clipper 11-12

Jussie sails with Clipper 11-12
I sailed the last leg (8) in 2012 - USA,Nova Scotia,Ireland,Netherlands & UK. Travelling 4,000 miles, approx 22 days at sea, with 4 races in this leg.

Tuesday, 25 October 2011

Hamsters and Angels

Purrrrrrr....it's been a while since I last blogged. Hamsters, wine, masks, social frenzy, fancy foods and a lotta spare parts. Chest infections, OB, lost LAM sisters and I miss a fallen angel. Read ALL about it. xx

The two photos above are of the gorgeous Rachey...who is now an angel and I will talk about this later in my blog. I am pictured with Rachey here in 2008 when we met for the first time after years of chatting on the internet.

So as above, I attended my first Harefield Transplant Club renunion party for transplantees with their family and friends. I was overwhelmed with the turn out, 94 people and 25 of those actual transplantees (including myself). I have wanted to come along to these weekends, but have always found myself on holiday. But......Croatia done and dusted this year, I was free to come along finally!! :)

Below some of the Hamsters gathering in the hotel. But what is 'Hamster' that I keep referring too? One of the medications taken post transplant is, prednisolone which is a steriod and quite commonly puffs out the face..hence some transplantees known as Hamsters..charming I know ;)

The first night was fancy dress with a mask theme and here I am as 'cats eye' and I wore matching black and grey outfit as a theme colour, then paraded with a skull cane and the skull face changed colour.

Do you know any of these people below.......

And here we have the lovely Jill (chair person) giving her first speech to all 94 of us, and very well done!

Below more 'mask' piccies - hope we don't find ourselves as wanted on Crimewatch ;)

Just another day with William and Kate.... and check out the waiters expression ;)

So now you have seen a selection of photos from the night, much fun and many giggles.....but the biggest joke was when one of the transplantee's had a mask cloning! About 20 'Jamie' masks were made and a group of people put them on then paraded on the dance floor....maybe a case of you had to be there. Oh Jamie - laughed so much and so did everyone else.

Don't mess with me...Grrrrrrrr........

I actually won the theme for the fancy dress night...woohoo and below I proudly hold my champagne :)

Good also to have some of Harefield's nurses enjoying in the fun, and Maria (far right) a lovely supporter still since her husband (Carl) passed away. I never met Carl, but learned that he competed in all the transplant games and found out this information taken from NHSBT

"He has competed in every British and World Transplant Games since 1985 - and was the world 100 metres champion in 1995. He first took part in the British Games in Edinburgh, just seven months after his transplant, and ran the 100 metres in 13.3 seconds.
He has since shaved two seconds off that time, won a host of medals and trophies and captained the British team at the world championship in Australia in 1995"

I feel very honoured to have met Maria and Carl was definitely an inspiration and loved by all.

Time to sleep now and wake up to a glorious sunny the next day, and have a fab walk along Bournemouth beach front.

Always time for sillyness too.....

And more so later back at the hotel, as Lisa's husband Jock, wraps a gift for tonights raffle prize - that of a sexual gift. And the winner was an older lady who luckily upon opening....laughed out very LOUD!! It's too rude for me to mention on my blog........

You see the jokes and banter continue as Mandy enjoys ballooning ;)

All smiles having dinner :)

I was asked also to be a 'raffle girl' to go round each table and sell tickets....my opening line was, "£1.00 for a strip" needless to say I sold many tickets ;)

And here we are us raffle chikas :)

The evening meal ended with all of us transplantees standing up to recieve an applause, thank you to our donors we are still here!

Dinner finished and time to party and shake some moves on the dancefloor, below photo with Nicola (left) and Diane (right) then me as double - lungs (middle)

Urm....no idea, but seems I needed a rest on the dancefloor - thank you chair for being placed so central. And nothing to do with the chair dancing..........men.....weren't you the lucky ones when taking a breather (or maybe you needed one after)........ to the women who gave YOU a chair dance!!!!

Music was provided by a female singer and the last tune was, 'you'll never walk alone' and everyone went onto the dancefloor. Two circles were formed all supporters on the outside and the inner circle with the transplantees. Always an emotive moment......

Well, thats a wrap for the Hamsters' weekend, and I had a great time meeting new friends and being inspired and learning of other people's journeys since their gift of life operations. I will definitely go again, especially as next year will be the 30th anniversary celebrations!! Loved it, a truly amazing weekend :)

So now onto fallen angels.......

My dear friend Rachael Wakefield (photo at top of blog when we met in 2008) passed away October this year and was just 23 years old. Rachy battled with ill health most of her life and we became friends after she wrote to me in 2005. I did an article for 'Breathing Space' magazine and she read about my diagnosis with LAM. Over the years that followed a great friendship developed and we supported each other through our highs and lows with our illnesses. We both had double-lung transplants, but, Rachey didn't take to it that well and faced many complications that caused damage to her new lungs. Rachey only had 18 months post transplant, not enough. It is a very tragic loss indeed - but Rachey lived and fought as much as she could. Now Rachey is a beautiful star shining and sparkling bright in the sky. I will miss her and our chats + giggles very much. Also, its been a tough month with more of my friends loosing their battles.......making me realise just how lucky living is.......I am very grateful and appreciate every day I still buzz about.

Part of transplantation, is that it is a journey and one of an extension. I value each and every day, every breathe and live for today and strive to do all everything whilst I can. I remain positive even when sometimes I may be struggling and have said to myself that I will be the longest living blue rinse double - lung transplantee....granny lungs ;)

I do get hope when I meet and hear of other transplantees still going and living many years post, the most recent of a chap 19 years post double-lungs, and also my friend, Nicola Langlands 22 years post double-lung/heart transplant with her own supportive website, Look Beyond the Heart

Now, some of you would have been unaware that I also had a blip recently and felt not my usual self. After all my sailing training earlier in the year, I decided to have a break and say 'no' to the British Transplant Games too. Rest, relaxation and eating lots and I felt a tad breathless - but thought that due to my lack of exercise. Little did I know I had two chest infections that were comprising my breathing and a decline in my lung function. I went on a 10 day course of anti-biotics and felt so much after, and my breathing felt better again :)

With all these going ons, I also had a scan of lungs and was told that I had early stages OB (described below) and was shown my scan - displaying trapped air in my lungs. I initially was very upset, and told changes in the lungs are expected after 5 years. I guess as told I don't need treatment - that IS a good sign. And with OB lung function should keep declining, but mine isn't - which I believe is all the exercise I'm doing.

'What is Obliterative bronchiolitis?
Obliterative bronchiolitis, also known as bronchiolitis obliterans, is a manifestation of chronic allograft rejection, that is, rejection following organ transplantation from another human being. It develops in nearly 50 percent of all patients who receive a lung transplant from an unrelated donor.
Obliterative bronchiolitis is a severe inflammatory response provoked by lung transplantation from an unrelated donor. The inflammatory response causes a large number of lymphocytes (a type of white blood cell that fights infection) to come into the graft tissue (transplanted tissue), resulting in fibrosis (increase in fibrous tissue) and progressive narrowing of the airway. This can cause airway obstruction and is a major cause of death in patients after receiving lung transplantation.

Once obliterative bronchiolitis develops, the lung function typically declines progressively. Generally, progressive obstruction to airflow results in exercise limitation, repetitive lung infections, and, eventually, death due to poor lung function.
The course of BOS, however, varies between individuals. Some patients experience rapid loss of lung function and die in a few months. Others progress slowly, followed by prolonged stability'.

So, there you have it, and you can understand why I was very upset at learning this news. However, after a few tears...I remain positive as life IS good now, my lung function isn't dropping now, and I will be one of those 'who progress slowly by prolonged stability'. Again, I have hope as have met and spoken to other people with OB and still here after many years.

I have defied odds before...and I shall again!!! I cannot moan or complain as I have said before..every extra day is truly wonderful and I know I am still lucky opposed to my friends sparkling with the stars at night.

OK.......there you have it. Things for me to look forward too.....Christmas!!!...more sailing this week to refresh my skills.....learning new athletic sports....and amazing family/friends who continue to support me all the way. I love my life..and smile every day. Be happy and share the love with me, thank you.

Over for now and lotsa smiles to each of you's

.....always smiling and always will (my motto) I stand by xx

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