"always smiling and always will"...a moto of mine that has stuck with me for years. Loving life since my transplant! Taking on various challenges from the Bupa Great South Run; UK, European & World Transplant Games in various sports; travelling the globe & sailing in the Clipper 11-12 Race. This year competing with Team GB in the World Transplant Games, South Africa
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.
Wednesday, 11 February 2009
Past Memories
I often have people asking me about my journey, and it has been mentioned that when I was in a coma not much was on my website about this. Recently, on the Lamline (forum for other women with the rare illness - Lam) it was asked about again. Below is the response to the email in question, which I decided to copy and paste on here too. Also I am no longer with my fiance who you all knew stood by me throughout my illness and the transplant, and I talk about that aswell at the end of the email.
........"As for the induced coma - and no talk of it on my website.....I went back to have a look myself. As I was very ill, my Dad was writing "updates" on my progresses with my health at the time - and when I was able - he was my PA..and wrote out what I wanted to say on my diaries and type them out for me.
My updates started in April - after the period of the coma. I went into a coma shortly after my Birthday - and for 3 weeks. My lung had collapsed 3 times within a week, and I told Dr.carby that the 3rd time - I was telling my dad my funeral wishes (it was a close call!)....and the team at the hospital/Carby decided that an operation would be performed to try and do something to what was left of my left lung (no right lung functioning by this time). I didn't take to it - which is why I was put into a coma. It was supposed to be a four hour operation......not quite - eh!!
My Dad also never wrote any updates - my parents I have learned during this time - underwent counselling - and preparations in the eventuality of my death. It was a very difficult time for them both - and I can understand not something easy to even want to write about.
Even when I came round from the coma, I still remained on life support for weeks - and wasn't told initially that I had been sleeping for weeks! So even when my Dad was my PA..my first exerpts never mentioned anything. However, Jon (who was my fiance at the time - decided to tell me). Jon told me I had been asleep for 3 weeks, got MRSA, pseudomonas, C Diff, an urinary infection, had an eye infection.....OMG I couldn't even comprehend this..I was unable to talk,move,eat, or drink!
However, I found some lines, that I did write about being in this condition as below:-
March 8th 2006..."" Hallo everyone. Thank you to my Dad who is typing this for me.
I'm on a ventilator to help me breathe - and I still can't talk or eat. So right now I have food on a drip.
Its hard - but I have good and bad days and I reckon it will take weeks yet to progress."
March 11th 2006...."
I'm attached to a Spaghetti Junction. On a ventilator - probably will be on this for weeks to help me breathe.
Getting stronger daily, a slow progress.
Can't believe how long I've been here & how ill I was during my sedation period.
Wanting to get better and wean myself off ventilator..............oh the joys to be able to eat, drink and talk again!!!! Something to look 4ward too."
March 15th 2006..""Had a scare yesterday when inside of lung collapsed. Doctors sent me to sleep plus drugs to paralyse me. Another chest drain was inserted on my chest. I've lost count now how many left "Freds" I've had...8 or 9...
Anyways...sitting in chair now writing this. Done some physio work + cycling machine for lower legs today.
Feel ok...just want to come off vent machine still. Allowed tiny sips of water through a straw now. Also flavours on the tongue - but no swallowing - I have about 5 different cordials and mix and match. I taste on a pink sponge which I squeeze excess dry then swab on tongue."
April 4th 2006...."From February - having 3 lung collapses in a week. On the 3rd lung collapse I was then thinking I was not going to make it - and saying goodbye to everyone. Then undergoing a risky operation from or after which I contracted contracted many infections and then being on a life support machine for weeks while I was unconscious.
I can't believe all that I've been through - it's a miracle I am still alive - I just don't know how. What a battle I've faced! I just hope that I get my chance for a transplant whilst I'm here."
April 12th 2006...."Today, has been the first day that I felt better and I must re-start my physio and weaning again. It was hard getting up to try to walk again. It seems to take such a long time. My muscles have so wasted away - guess its going to take time. So, I know from that alone - I will be here for some time just trying to learn to walk again - one of the things we take for granted."
April 23rd 2006..."This is a hard battle I'm facing - and oh for the day this is over, and I can be 'normal' again. To be like everyone else... walking, breathing, eating properly, to exercise, to live a life away from living a life in hospitals."
Also, I have to be honest..that whole experience for me - was extremely difficult - and a very DARK phase in my life - when if I'm honest, how I was at that time..I just kept writing I'm dying all the time..I was struggling to breathe even with the ventilator...and there is nothing more scary than hearing a machine breathe for you and work as your lungs - whilst you are awake and conscious..totally freaked me out! I rarely talk about those times - which is why perhaps - there isnt so much written on my website. I am finding that now these images and scenarios are re-surfacing - and sometimes upsets me so much. I can't believe I endured and survived all this - when even after the transplant, my surgeon said "technically I should have been dead!" (my lungs were completely destroyed with dead lung tissue and cysts).
But, I must stress again - I am a very positive person - and my case is very rare in terms of the advanced symptons of Lam. It doesn't mean you or any newcomers will go through what I endured. But, I hope by being so frank - it WILL help anyone who may face difficulties with lam at a later stage.
I also did mention some of my ordeal when Melissa was going through a very rough time (still miss Melissa very much) and I opened my heart to the realness of my times in ITU - and loosing all sense of dignity and hygiene - as I was a vegetable and unable to do anything myself.
My journey has taken a full circle. I live for life. I have a zest for life like never before. I do not wish in a million years I went through any of what I did. However, I kinda believed it was meant to happen - to give me understanding how prescious life is....how to appreciate all and everything every day. To always be happy and smile, and try and achieve things/goals with my extension. It gave me a purpose to raise lam and organ donor awareness..in the media...raise funds...give talks..and now I am going into my 5th year of this!!
Phew......this IS a long email...sorry peeps...Oh see I did tell those - that I can waffle too!!!! ..ooopppps
And as to the fairy tale - well that ended - Jon and I grew apart - both wanted different things. But we are still in touch and get on very well. We both have moved on with new partners and both happy....aww
Tuesday, 3 February 2009
My travelling diary from Oct-Dec 2007
| Hi everyone, I have decided to close down some other social sites that I joined ages ago (Myspace and TheTX Space site) - reason being I can't keep up with it all! And prefer to focus now on Facebook and also the American site (Transplantcafe.com). I do not want to loose all the journals that I wrote up on Myspace when I went travelling about a year and a bit after my transplant through europe in 2007 - so have copied/pasted them all in here! My travels started in October and ended December 2007...so if you read..you may like to scroll to October and read up!? Best wishes for now - and happy reading if you do! Oh I would love to travel again if I had the chance!!!! x x x Friday, November 30, 2007 
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| Wednesday, November 28, 2007 
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| Sunday, November 11, 2007 
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| Monday, October 22, 2007 
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| Thursday, October 18, 2007 
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 And also, to kinda detox..lol..get back into my healthy diet of plenty fruit n veg....exercise...start boxing as I previously had a go at b4 I departed, and have a breather frm coffee addiction n cakes..lol..
  And also, to kinda detox..lol..get back into my healthy diet of plenty fruit n veg....exercise...start boxing as I previously had a go at b4 I departed, and have a breather frm coffee addiction n cakes..lol..
 ..keep well...lotsa luv n hugs x x x
..keep well...lotsa luv n hugs x x x .
. I was in awe of Venice (still am)..but here is also just seeing is believing!! Croatia has many beautiful parts, and I wish I had more time to explore smaller islands too. My hotel room overlooks the sea almost up a mountain. The sun is shining down today and the views are spectacular with crystal clear blue sea!
 I was in awe of Venice (still am)..but here is also just seeing is believing!! Croatia has many beautiful parts, and I wish I had more time to explore smaller islands too. My hotel room overlooks the sea almost up a mountain. The sun is shining down today and the views are spectacular with crystal clear blue sea!  WOW!! It is here that I have been visiting the old town of Dubrovnik, and I just can't wait to upload photos so you all can see how stunning Dubrovnik is. I have made some wonderful friends in Croatia, and a great girl who remembers when the war hit Dubrovnik (she was just 7 years old then) and lived in a basement, (cripes). Also, I'm loving the food here the most from all countries that I have travelled to so far +  the life style here. I would be SO tempted to live here, if it wasn't such a smoky country, and if they had a lung transplant hospital!! However, they don't do lung transplants here..and the people I have met so far..think that I am some kind of miracle!!
 WOW!! It is here that I have been visiting the old town of Dubrovnik, and I just can't wait to upload photos so you all can see how stunning Dubrovnik is. I have made some wonderful friends in Croatia, and a great girl who remembers when the war hit Dubrovnik (she was just 7 years old then) and lived in a basement, (cripes). Also, I'm loving the food here the most from all countries that I have travelled to so far +  the life style here. I would be SO tempted to live here, if it wasn't such a smoky country, and if they had a lung transplant hospital!! However, they don't do lung transplants here..and the people I have met so far..think that I am some kind of miracle!!  
  
  . And when I arrived at my hotel, I had a balcony..lol...with a view of snow covered areas!!
. And when I arrived at my hotel, I had a balcony..lol...with a view of snow covered areas!!  ..not exactely balcony with a sunset paradise sight..oh well..still found that xciting too.
..not exactely balcony with a sunset paradise sight..oh well..still found that xciting too. . Also with various eating experinces...good bad and plain right horrid meals (only a couple thou not so hot) but genuinly - as far as I'm concerned..it all adds to the travelling experiences. In Zagreb I have probably felt the most awkward especially with the language - it's so hard!! I managed to get by with Spanish and Italian (not an expert thou by any means). However, I ordered tea yesterday...well I got Indian tea bag and large wedge of lemon!!
. Also with various eating experinces...good bad and plain right horrid meals (only a couple thou not so hot) but genuinly - as far as I'm concerned..it all adds to the travelling experiences. In Zagreb I have probably felt the most awkward especially with the language - it's so hard!! I managed to get by with Spanish and Italian (not an expert thou by any means). However, I ordered tea yesterday...well I got Indian tea bag and large wedge of lemon!!  ..lol..So..not to be rude I drank Indian tea and squeezed lemon juice in it!!
..lol..So..not to be rude I drank Indian tea and squeezed lemon juice in it!!  
 lol and I absolutely love it here!!  I also know some Croatian girls who I will be meeting and hopefully they will help me with the cuisines delights of their country. One being boiled cheesecake, brandys, spicy meatballs, and heaps more foods!  The clothes are nice too..don't think I have much more room for many more things, as have also been Xmas Shopping along the way.
 lol and I absolutely love it here!!  I also know some Croatian girls who I will be meeting and hopefully they will help me with the cuisines delights of their country. One being boiled cheesecake, brandys, spicy meatballs, and heaps more foods!  The clothes are nice too..don't think I have much more room for many more things, as have also been Xmas Shopping along the way. .  Oh..I nearly forgot to mention..it is such a huge social scene here too..loadsa bars, cafes, clubs, quite a trendy hot spot actaually. Thou...everybody smokes here..even if I fancy a coffee somewhere (I end up smelling like a cigarette..poo hoo, yuk!). Hmm..they need to bring the no-smoking law to this country (well I can live in hope - eh?)..
.  Oh..I nearly forgot to mention..it is such a huge social scene here too..loadsa bars, cafes, clubs, quite a trendy hot spot actaually. Thou...everybody smokes here..even if I fancy a coffee somewhere (I end up smelling like a cigarette..poo hoo, yuk!). Hmm..they need to bring the no-smoking law to this country (well I can live in hope - eh?)..


 
 

 
  oops excuse me..but to myself I was like...WTF....oops sorry..lol. Needless to say, I ate it all...kinda like a cookie warmed up and very tough...even thou it wasn't all that nice. But, I am trying to adapt..lol..
 oops excuse me..but to myself I was like...WTF....oops sorry..lol. Needless to say, I ate it all...kinda like a cookie warmed up and very tough...even thou it wasn't all that nice. But, I am trying to adapt..lol.. ...riverbus, art gallery (with Venetian Art), famous buildings here...walking up hundreds steps over all these bridges and tiny roads...and exploring the most beautiful city that I HAVE EVER EVER seen.
...riverbus, art gallery (with Venetian Art), famous buildings here...walking up hundreds steps over all these bridges and tiny roads...and exploring the most beautiful city that I HAVE EVER EVER seen.


 ! .. friggin tired as usual and aimlessly lost!!
! .. friggin tired as usual and aimlessly lost!! . There are only about 4 buses a day that go a station somewhere..where I get a connection to the centre of Rome...and again going back. My last bus to get me back leaves at 10.20pm (its like having a curfew or being back living at home)
. There are only about 4 buses a day that go a station somewhere..where I get a connection to the centre of Rome...and again going back. My last bus to get me back leaves at 10.20pm (its like having a curfew or being back living at home)
 ..lol. Actually if u r taken still come here..u just gotta see for yaself!!!!
..lol. Actually if u r taken still come here..u just gotta see for yaself!!!! WOW.....lol. Keep smiling dudes... hugs x x x x x
 WOW.....lol. Keep smiling dudes... hugs x x x x x 
 
 . Walking up to the water and letting the waves brush over my feet...yikes, icy cold water!! I got a little teary eyed kinda reminiscing how the man who saved my life has made my dreams a reality. A surreal reality as no more pain or breathing problems, just walking freely,happily, and loving every minute of my travels!
. Walking up to the water and letting the waves brush over my feet...yikes, icy cold water!! I got a little teary eyed kinda reminiscing how the man who saved my life has made my dreams a reality. A surreal reality as no more pain or breathing problems, just walking freely,happily, and loving every minute of my travels!
 lol
lol with them..woohoo!! Also yesterday, I went to a place called "Ciudad de la Artes y las Ciencias"...a huge area with 6 different complexs. I went to two of them an Aquarium type place and a Science n Technology one (yer..got some brains u know!!!??).
with them..woohoo!! Also yesterday, I went to a place called "Ciudad de la Artes y las Ciencias"...a huge area with 6 different complexs. I went to two of them an Aquarium type place and a Science n Technology one (yer..got some brains u know!!!??). I wonder if the Italians will make a better one than me - even thou I am slightly Italian (me thinks I will have to eat humble pie - n except that mayb here they will do..gulp..oh well). Adios x x x
I wonder if the Italians will make a better one than me - even thou I am slightly Italian (me thinks I will have to eat humble pie - n except that mayb here they will do..gulp..oh well). Adios x x x 

 Ola Ola!!!
Ola Ola!!!
 Hey everyone,
Hey everyone,
 
 
