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.

Thursday, 26 March 2009

The Sweet Escape

I am absolutely shattered now from driving 2 hours each way, spending the day at hospital and seeing a few mates! There is no rest in my life..all go...go go!!!!

The first procedure is to get my blood tests done, and in the last blog I said that after nearly 3 years of them...still clueless. So, I made a point to find out what and why there were doing..lol. There are 8 blood samples done in total being:-

1) a full blood count - which checks for infections and if I am anaemic or not
2) a sample to check my kidneys are working
3) a sample to check my liver is working
4) a sample to check my glucose levels, whether my sugars are too high or low, and for diabetes
5) a sample that checks for more infections (a specialised test..!!??oooer..lol)
6) a sample that checks my tissue type, and my anti-bodies (this is done every 3months)
7) a sample to check whether my blood is clotting
8) and lastly a sample which checks my medications - that they are still working fine, or whether levels need to be adjusted.

Then weight, blood pressure, temperature, oxygen saturation levels are done.
Then a light walk to get my lung x-ray...and I can't seem to go anywhere without bumping into staff that I know there..have a good old chit chat and some giggles...Oh..better get my x-ray done..tee hee!!
Then off to the "lung room"...as I call it, where I have to breathe into a machine to get my lung function results. As much as I exercise, this is really hard work.....my first result bizarrely was ok, and the other 3 declined each time. I was running out of puff, and had had enough!! I actually felt good for the first time in ages after doing my lung function (slight decline from last visit, but nothing to worry about).

Ok Ok tests all done..now I was off to meet a mate for lunch, Carrie in Uxbridge - where I ate the biggest jacket potato known to man with tuna mayo and cheese......yum!! Hopefully next time, I will get to meet with Liz - hope you get better sweetie. Now my drive back to the hospital feeling full and wondering what my Doctor would say......But, I still needed and wanted to see Sally who about a week ago had a double-lung transplant, and Grazyna another LAM lady staying in for a short while.

It was great to meet Sally, and going great guns!!! Just look at the photo at the top of the page!!

And fabulous to see Grazyna....both Grazyna and I last remember seeing each other when we had our oxygen tanks, and it was so nice that we were both without oxygen and tubing! Woohoo!!!!

So after more chats with other patients and staff.....time to get my results, and I flew away with flying colours. Yippy!!! My next check up is in 6 months time, which will be slightly after my 3rd year annual MOT....which will require more tests. But, I am delighted to be leaving hospital feeling happy, and ironically a tune played on the radio called, "The Sweet Escape" by Gwen Stefani. Those who have been following my diaries from my website may remember how this song played a big part in my life every time I went to hospital in the early days...as I feared rejection. So.....loud as you like I was singing away in my car - no care in the world how stupid I may look!!! Lol

Thanks for all the lovely messages, and thanks for still being interested in my life post - transplant!! x x x

Tuesday, 24 March 2009

Pre-Hospital Feelings

Hello peeps.

This Thursday (26th March) I am back at Harefield Hospital to get my lungs checked. I feel positive and hope all will go fine. The only struggles I have, is when it comes to the lung function tests. I tend to get nervous and panick which affects how I breathe into the machine bringing about low results. I know if I can't get them up....my doctor will think it's the first sign of rejection and want to keep me in for further tests..poo hoo. And, this happens every check up and I wish I could shift my pre-nerves on this matter.

Every day (well almost) I do my own spirometry and therefore know my lung function is fine. I do change every day from results varying high one day to low another day. But over a period of time it is always like this, and my Doctor has said that's fine as if you draw a line throughout the up/downs...it is showing stability. Not sure if that makes sense to any of you, but I gained reassurance from this.

Other tests include plenty of blood tests, and believe it or not - even after nearly 3 years of this, I still don't know what they are all for..hahahaha. I think I may write it down this time and actually be "with it" as to what and why they are doing with my blood!! But from what I do understand it is checking my kidneys (as the medications affect this...some people even need a kidney transplant too later on down the line), and checking my tac levels (again to do with my medications). The rest I will endeavour to fine out for my knowledge and all of you wishing to know too.

Then off for a lung X-Ray....into a cold room wearing a flowery hospital gown!!!! Not my idea of casual wear with jeans!!

I have to have a good result day, as my holiday is in about 2 weeks now. If my Doctor has any concerns with my lungs...then it may be a case of...."man overboard" when I'm on that cruise!!! As I am going and thats that..and I will be fine!!

I am hoping to also meet with a few friends this day too, one being a nurse who previously looked after me when I was very ill, and an old mate who works in Uxbridge. Also to visit Sally, who has recently had a double-lung transplant and we have spoken via the internet for years following each others' journeys. I am delighted that Sally has also recieved the gift of life!!

So..other news...urmmmmm...exercising heaps, lost a little bit of weight from this and with eating better foods (of course I have bad food too...I can't always eat like a rabbit on cabbages and green leaves)!! Counting down the 2 weeks until my holiday...suitcase is out...clothes/shoes being decided upon. I'm sure there are other things, but, I think this will do for now.

Oh..I also met a lovely girl called, Charlotte who I visited at Broomfield Hospital - who knew about me and my story from being a "tabloid/media" face. Charlotte has a rare lung disease and requires oxygen too. It is quite funny really, as she has seen me twice in two different shops in my home town, and even though we have exchanged messages via the internet (I haven't seen her back when out in these places). I said you must actually say "hello" and not to be shy. I was quite taken a back when Charlotte said that maybe I wouldn't be interested in meeting with her as probably gets lots of messages (or words similar). Well, I wanted to meet Charlotte - so I did - Easter egg in hand, and even though maybe I am known for being ill (don't like people saying I'm famous)...I am normal and just like everyone else!!!

Have a happy week everyone, keep smiling, and keep well x x

Saturday, 14 March 2009

Tough Cookie

Well the thing when writing a blog, you have got to be in the "mood" to write, and also have something to say... (some people will say..I always have something to say..haha). This last week, has been a challenging time for me.....had someone with whom I thought was special say some ridiculous nonesense to me.

But in true Jussie style and strength, I amaze myself sometimes...I am back full of positiveness and high energy! Life throws things at you when you least expect it, challenges your mind, tests your patience, and sees how far it can push you. The question is, how much can you take before you crumble and fall?? I wouldn't be human if I didn't have a wobble and think "Oh Cripes"..but that doesn't last long!

I realise my life is an extension.......and what would you do, if someone said to you "...enjoy what time you have left...."???????

I mean....ok.....it is going to happen to me...and to all of us......but I can still live a very long time (and I want to be the longest surviving double-lung transplantee). Not to be negative (because I'm not)...but anything can happen, and can abruptly halt at any time by unforseen circumstances ie: accident. However, just because I have had a transplant...doesn't mean I am a write off..a ticking time bomb. I can still live my daily life like anyone else, still enjoy the life around me.

I was extremely hurt at first by this, then my hurt turned to anger (and I'm not an angry person)...and now all those emotions have churned into positiveness. How? Well.....why cry over spilt milk? Why waste my energy on feeling miserable? Why worry about somebody else's careless statement? Why sulk over something that isn't going to happen, as I WILL live a long time. Why..just why...why waste another second worrying....why not....except, deal with it....put it behind you..and move forward!!

Move forward into good energy...be with people similar minded....be creative...be pre-occupied...be happy..and always smile (and that I do!!). And plan on exciting things such as a holiday, and I have done that. In less than four weeks I am going on the most amazing trip of a lifetime on a Meditterranean Cruise on my own (oh yes on my own..can't wait) for 7 nights...Woohooo......fabulous!!!

I have so much to look forward too, my 3rd transplant anniversary and the UK Transplant Games are in 4 months, my first marathon in 7 months, and the buzz that is just life!!

I can put nonesense behind me, forget, and strive forward onto bigger and greater things. So what makes me weak, only makes me stronger, as I am a Tough Cookie. x x

Monday, 2 March 2009

February Frolics

Woohooo..what a great month February was! I celebrated yet again another Birthday - 36 and an extra Birthday thanks to my donor. I still think of the man who lost his battle and saved mine. Infact, there probably isn't a day when I don't. Almost as if he IS now me, and a part of who I am. He is what motivates me and keeps me living and smiling and appreciating every extra day. Long may I live.

I feel like a kid - even though I am not a child anymore..it's really hard to explain..or maybe not. To know you are dying - then to be given a gift that turns your life to one of normality and like everyone else's...everything and anything excites me. I relish every day...all that I can do....like a bee buzzing and slurping up all life's rich honey.

WOW..another Birthday...so I must celebrate!! So on my actual Birthday (12th) , I had few mates over and cooked a lasagna of all lasagnas.....went to London the following weekend for a meal and clubbing night. Finally - a group Birthday celebration with sum other chicks from work - by which we all went into the local town. I have had such an amazing time this month. I have danced, eaten, chatted, giggled, and loved any minute seeing my friends...

The last Birthday prior to my transplant was a very different scenario.......

I remember being treated to see a show, Circe De Soleil...a fab acrobatic circus act in London..that night my lung collapsed and I woke up during the night...screaming at my parents to wake up! I told my Dad my funeral wishes..inbetween gasping for air to help me breathe...I could feel my body shutting down.....what a horrific and scary time...to which I induced into a three week coma. So..I guess you can now see, why every Birthday that I get to celebrate - truly..truly delights me...and why maybe I don't act my age - and why I feel like a kid!

Also February, has been a positive month getting back into my fitness again. I guess I slipped for almost 3 months of doing nothing...partly being ill before Christmas..enjoying the festivities and foods..YUm!!! Then loosing my confidence to start up again and when I did try again in the gym, I felt totally deflated as all I had achieved..had now lost :(

However......I do and can pick myself up again. My donor tells me off..and I know that I will not do well if I don't keep myself and my lungs healthy by being a lazy pudding slacker! What actually helped kick start me..was joining a 6 week beginner's running course, which will also go towards helping me with my half marathon in October. The running group, is a small group of women only, and more 1-2-1 coaching is given as opposed to me slogging away in the gym with no coaching. I guess I need help..as much as I can get and encouragement along the way. Sometimes, I get frustrated still with my breathlessness - BUT it is no means how my life used to be and I AM very grateful. Guess I just wish I was a super duper runner, who could run easily for 10 miles and not need stop/start as I do now. But...I know even if I do walk and run..whatever I do...WILL be a huge achievement for me.

I would also like to thank the fitness team at the gym, who have given me support along the way, I really appreciate it - especially to Fran (who also coaches the running course) and Alan.E (who is such a good motivator) - thank you both. x

I am also starting a 5 week street dance course, and Badminton (just tried twice recently) - to which I hope to get onto a Badminton course soon (in April). And also once a week do Body Balance (which is a combination of:- yoga,pilates, and tai chi combined) to help with my flexibility and stretching.

But what about the pudding slacker? No more Miss "I've got to have a sweet dessert or cake every day"....eating lots salads and healthier foods...avoiding alcohol now (not that I drank much in the first place). I have just re-adjusted my foods from last week, and it's amazing how exercise/healthier foods really DOES make you feel "ontop of the world" and that with a 2nd chance on life...every day is like "WOHOOOOOOOOOOOOooooo"!!!

Finally, my wishes goes to my cousin who has recently had a cornea transplant, a body part that some people think of not donating. If he takes to it - which I'm positive he will..then he will regain his eyesight and not become blind. Amazing amazing.

Over n out lovelies...roll on more happy days x x x