Captain Jussie

Woohoooooo - thanks for this piccie captured by Kim



All wrapped up - Ninja Jussie


Here I am back in the 'sailing' mode about to have a few days at sea to refresh my skills. I didn't want to not be able to go sailing again this year, and leave until February '12 when doing a Clipper refresher course. I thought it was important to keep the momentum going, and have a chance to go over some basics again and conquer some areas I felt I lacked confidence in. I was nervous and excited and hoped wouldn't be sea sick either!

Hey, check out the yacht I was on over the weekend...great name - eh!! No reflection on me or anyone else ;)



Below, is Adam Tuffnell the skipper incharge over the weekend, and just getting set up with his electronics..men and their gadgets ;)

Also, for anyone interested in sailing check out Adam's website in this link for all you need to know/courses available White-Ocean Website

I was the first to arrive on Thursday 10th November and Adam was in the little galley cooking a mexican dish. The drive down was a nightmare, lots of traffic and sadly accidents and a perhaps 3.5 hour journey took me 5 hours (including a pit-stop on the motorway). I was quite tired upon arrival, but suprised at the lavishness of the yacht - a 34foot Bavaria, and had my own cabin - woo!! I guess from my Clipper training on a larger yacht with basics and a sling of material as a bunk with no privacy - I expected the same. So, happy days and I unpacked and made myself at home :)

Later that night, Kim and Julie arrived who I already knew from earlier in the year but not sailed with before (and they are both on a different yacht to me in the Clipper Race). It's nice when you get to meet and spend time with new people, an element I really treasure from this experience to date.

Here I am with Kim practising knots.....bowline, rolling hitch, clove hitch etc

Anyone would think Kim was moving in long-term - how much stuff ;) It's amazing really how much you need. One bag for sleeping gear, another for foulies, then another for base layers/boots/deck shoes/toiletries/clothing etc....it all adds up. But, I am trying to master less and pack well as for the race itself as there will be a weight restriction onboard the race. Also due to condensation packing everything in airtight 'drybags' is essential!

That night was spent eating our mexican wraps and having a good chat before we all decided it's time to sleep.

The next day another two people joined that being Honour and Javier and once breakfast done - time to set sail! Yippy!

My main concern is helming and I had plenty of practice - only small movements on the wheel are needed from left to right and centering the wheel each time. Otherwise the yacht swings from one side to the other...lol...I had a few of those moments and left a trail of zig-zag patterns in the sea when I looked behind me!

Oops splash effect look ;)

Woohoo!! Love the waves crashing over :)

I have uploaded some photos that follow below with a brief sentence, so enjoy until I write more.

Julie on the helm - it requires serious concentration you know ;)

Javier and Honour enjoying the view

Julie and I taking a 'smile' moment for the camera :)

And, I even get to helm in the dark.......

The weekend I joined for this sailing adventure, was actually a two part day skipper course - but, I just wanted to refresh my skills and get the experience back on the water. So, just did the one weekend. But, whilst I was there - still learned day skipper aspects which will help whilst doing my leg in the race. And here I am with Honour looking at charts and navigation planning.

And now night navigations....

On the Friday, I was 'mother' to cook for the crew and skipper and on the menu was chicken curry. It's actually quite hard to prepare and cook with such a tiny space and lots of prep was required cutting vegetables, cooking, washing up as you go along (where possible). The great aspect was that I was preparing/cooking on a relatively smooth sea and that will not always be the case. I remember for some of my training earlier in the year, being 'mother' and having to prepare drinks/foods when the yacht was at a 45 degree angle. Needless to say I did feel a little...green!!!

The view from above to below and you can see how small on the left the galley is.

And here is the space I had to to work with....its's small, but you manage...like you do on the Clipper yachts. Actually I love cooking and its quite normal for me to host parties at my flat and love making lots of food. Nothing makes me more happy than seeing my friends enjoy what I have prepared. I never manage to cook just enough...I cook way too much, and it is known to have 'goody bags' to take home after leaving mine :)

Chicken curry for 6!

After a day at sea and a heavy duty curry - it was time to report back to my cabin and catch up on some sleep.

It's lovely to wake up in the morning to tranquil waters and beautiful scenery.

Some of the perks being at sea :)

I love the peacefulness of this all.

So, a new day and time for more drills at sea and plenty of man overboard practices were done, and mooring onto buoys. It was good as we all had a turn to do each part of a drill whether ie: helming to a mooring buoy, lifting the rope, passing through a rope in the loop attached to the buoy etc.....so roles were equally experienced. This concept was done over the weekend in all aspects of day skipper. The benefits of a smaller group is that you DO get to learn and experience everything and have time to go over, question, and make sure you fully understand what/how to do things. To which really benefited me as to what I wanted to be able to gain from this weekend!

Sharing a happy moment with Kim

I have no idea what I'm pointing at..or even why this photo of me was taken like this, but, found it quite amusing - hence why on my blog ;)

Look at my serious focused face whilst at the helm!

Adam guiding me whilst helming - I am never serious - but I am when responsible for a 34 foot yacht and a crew of people on board. No time for full throttle and three point turns...not like driving on the roads!!

And finally I get to park! Didn't quite get to the spot required and moved up along the jetty...just aswell there were no other boats or it would have been a pile up! Most of us managed this task quite well when it was our turn at the helm to moor up...except...perhaps a couple others moved along too and if any yachts were there, would have been...aim and hit ;)

From helming and taking turns with the ropes to moor up - and being covered in pigeon poo from a jetty splattered..urm..not nice and very smelly. But, all part of the journey and I wouldn't change a thing. Like also having rough weather and waves crashing over, getting soaked from the sea/rain - all part of the experience.

Ok just a couple of random piccies here.

On Saturday night we all decided to go to a pub, eat, drink, share some giggles - before the last day training the following day. It has to be said by this point, I was truly exhausted and struggled eating my meal which is unlike me and by 10pm felt I could just drop my face on the table and fall asleep. We all left by 11pm and that hour I barely spoke much (again unlike me) as my body was shattered.

Here I am with Kim and Javier all smiles at the pub.

Sunday morning when we left port, the sea seemed more choppy and we were going against the tide. I did feel a little queasy and wasn't able to focus as my head was like a space cadet. I quite like the change in the sea, as I find it exhilerating - but do not like feeling unwell. I tried to focus but knew it was just a matter of time......hahahahaha!!!! And sorry Honour who saw my face change and told me to get to the back of the yacht......

Needless to say..........I felt better after and Honour gave me a rice cracker to help line my stomach - thank you.

After a short time, I was back on form and had more time helming and laughing about and absorbing all the drills again. Plenty of time was done with the sails and reefs in/out and learning about trimming and how when at the helm to know when adjustments were needed to the sails to aid helming making it easier. I eventually got a feel for this and noticed the difference it makes when at the helm. Happy Days!

We all arrived back at the Solent in the afternoon and spent time cleaning the yacht, and then I had a de-brief with Adam. I was happy to know that Adam felt I had done well, and this weekend meant so much to me as conquered perhaps fears I had/or areas I felt I lacked confidence in. The next time I sail again will be in February next year. Then, I fly to New York at the end of May to join the final leg of the race. I do not want to let anyone down and want to feel confident with my sailing skills and get ready for the challenge of a lifetime for me.

I know this has never been done before by anyone who has had a double-lung transplant, and I really hope I can do this, and inspire others that there is hope and that organ donation really does give a life and has made me have a life!

Driving back - I felt a little teary eyed and happy, sometimes my emotions get the better of me. I find it hard to share and feel better that I have my private moments as don't expect people to understand how little things make me happy and smile. Also, thinking about my donor - a day doesn't go by when I don't think of him and how I still breathe for him.

So..that's almost a wrap. Loving life and smiling and may get to blog again before Christmas...it certainly has been an amazing year with highs and lows. Phew....deep breath out.....

Over xx

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