Wednesday 28 December 2011

The other side of Me - Extreme Control Pole

Ok so I'm doing a bit of shameless self promoting here. If you live near exeter then this might interest you. I teach in honiton. Private Fitness pole dancing lessons, in the comfort of my home studio area. I have a Pole with 2 large mirrors. I am the cheapest Instructor around because when I was learning affordability was the biggest issue, I had the skill and muscle but lacked the finances. So when creating my lessons, not only did i want them to suit my students individually but suit there affordability.

One on one £20

2ppl £12 each

3ppl £10 each

Or the January offer to help you get back to fitness and burn off the turkey belly £8 each for a lesson of 3 ppl. This offer lasts until the end of January and you can have as many lessons as you want in that time.

If your an existing student then don't worry you won't miss out on a January Offer, for every class you introduce then you get £10 off a lesson, you can only use £10 off a class a time.

My class's will tone your core strength, upper body mostly but can provide an all over body work out and a great cardiovascular work out.

Pole dancing is done in bare feet and fitness clothing. I also sell a great range of fitness pole dancing clothing.

Please email me on for pole dancing only and add yourself to this group

Thanks guys

Sunday 25 December 2011

Merry Christmas

This time last year, I was Ill, I was always ill actually and I had had enough, it was Christmas that i decided i couldn't live like that anymore and on the 29th I asked to be referred for transplant finally. I knew the pretending was over, my life was slipping away and something had to be done.

I never thought I would make this Christmas, my first Christmas with my husband. But here I am. Stronger than ever living life to the full.

I have spoilt my niece Kaylee, nephews Charlie and Reece. I spoint Stuart, My Mum and My Nanny. In fact everyone. But the most important thing, i probably enjoyed it more than receiving my presents, although I did enjoy that to. I felt sad when the presents had been all given. I baked biscuits as presents and made cupcakes for Christmas day. It turns out im pretty good at this baking milarky and I really enjoy it, Iv been baking & cooking alot since my transplant, i now have the strength to stand long enough, in fact just have teh energy to even concentrate, where as before I couldn't even sit in the kitchen and bake as it exhausted me. For me no present could beat the two amazing gifts iv received this year, the promise of life with the man I love and gift of life to spend my life with him, that was obviously the most precious thing I could ever receive.

As I write this i think mostly of the amazing person who gave me the gift of life, my donor and there family. This is there first Christmas without there loved one, I can't imagine there pain, but wish my angel the most beautiful first Christmas in heaven and there family some peace front there grief. So please thing of all the other donors out there and there first Christmas in heaven and there family's left behind.

Also could you take a minute to think about Rachael Wakefield, a true angel in the sky and also Marjolein Van and all the other Angels we lost this year.

Another Christmas thought, for all my friends who are also celebrating there first Christmas with new lungs, Jennifer wederell, Angharad van der walt, Chantelle Hughes, Sophie Gannon, Charlotte Davies, Victoria Tremlett and Katie llyod, Sharee McPhail, Salley Russel. Lots of new additions to the new lungs club, Its been a good year for transplant, sorry to those missed out.

My final thought is for my amazing cfers who are struggling this year, Kim kneil, also married this year but waiting to be listed for transplant, Kerry Alex Thorpe, engaged to her lovely fiance, hoping to get married with shiney new lungs, Alan crowther with out your help Alan might not be here next year, but a transplant in this country is out of the question pls donate here and finally Jess Brenwood whos spending christmas in hospital also hoping for new lungs. Also think about all the other people out there this Christmas who without a life saving transplant won't be here next year. Iv always said out of me and all my friends statistically half of us would die on the transplant list, great fully I haven't had to say goodbye to many of my waiting friends.

So please although, my story has a happy ending, don't forget those who won't, we still have a huge shortage in organ donors, So if you feel like giving the greatest gift and change someones Christmas one day, sign the organ donor register

Merry Christmas

Friday 23 December 2011

Christmas sign up stalls

Well the last of my stall were held last night in princesshay in exeter. We had a total of 245 people sign up over 6 stalls.

I’m absolutely thrilled, but it did lead to some revelations about people and there views on organ donation. My previous theory was that most people wanted to donate but just didn't get round to doing it. But actually some people just don't like it, others don't agree with it, the principal and indeed some people said they didn't agree with transplant at all. This thoroughly upset me in many ways, does this mean they don't agree with me being alive today, do I bend all the ethics and rules. How can people disagree with something that saves lives and improves the quality of people’s lives? Is the idea of organ donation that horrific to some people?
Well I guess when I got down to the nitty gritty and asked why people didn’t agree with it, most people couldn't really give me a valid reason, they didn't want to think of there death, well I can understand the idea of that but for me I thought about me death for well most of my life, I never planned for living, set on the idea that I was going to die one day in the not so distant future. So therefore I have no taboo over death, it’s something I thought and discussed openly, I didn't want to die but I didn't find thinking about it offensive. So perhaps we need to bring death in to the 21st century, It happens, It horrible and often seems cruel and unfair but isn't it best to plan for the inevitable, it is one thing we can all be sure of, one thing every person has in common, so perhaps to tackle organ donation we need to tackle this deep taboo.

The other reasons I heard were religion, only I was well prepared to tackle this one, that all major religions agreed with organ donation although some one guy tried to tell me that he was a personal friend of the popes and the pope did not agree with organ donation, my patience was wearing thin with this particular know it all.
Other reasons were simply down to lack of knowledge and a greater need for educating people on organ donation. One thing many people came up with is imp not allowed to donate, or I#m on to much medication, guys if I can donate my organs with all the medication iv been on im pretty sure your alright. There are only two illnesses that rule you out for organ donation, that’s HIV & CJD. Sexuality, colour and religion pay no part in this and even the rules have changed for those giving blood now! You are allowed to be a gay male and give blood!

So my sign up stalls are over, I had a great many helpers, who id like to thank, Robyn bennet mostly as she stuck with me through blustering winds and made me laugh constantly, my best friend Julie, Stuarts mum and dad Julie & Pete, my lovely niece Kaylee who's only 9 and managed to sign up around about 10 pp and finally my husband Stu who came and helped out after a full days work.
I hope to carry on my stalls in the new year and also look forward to a few other projects, such as speaker project of which I'm participating on the 14th and already have my first talk at my secondary lined up after wards, my aim is just to educate the student about organ donation and transplant, the decision is up to them, I'm also lining up a few more schools, colleges and unis.

I'm also excited that LLTGL have asked me to work for them as an employee one day a week, doing various other things for them along with my advocate work. So that's all very exciting.

Thursday 15 December 2011

Infection, virus and rejection

Ok so I'm finally back home after a week in London and an admission. I had a ct and a bronch, It came back that the ct was a bit fuzzy on the bottom and my bloods showed the metanumo virus, nothing big but it can cause an auto immuno reaction, so basically possible rejection, which isn't a big deal in the first ear and can happen a bit, so I'm lucky iv only just got a little bit. I also had a bit of infection lurking around. I was started on methyl pred industrial dose, immuno globins and an Iv antibiotic.

I have to say I was going crazy in there, I hated not being near home and at times wasn't allowed out because of lowered immune system with the methyl pred.

Yesterday I was told I would be going then I got told my white cell count had dropped and had to have my blood re done, they came back fine and we rushed out the doors as fast as we could.

Harefield is a great hospital, but when you feel perfectly fine it grates on you quite a bit.

Anyway, I'm back, my Christmas decorations are up and I'm trying to get some lessons in place, also trying to get back into my fitness regime, I have been slacking so I'm off to the gym today.

Any way a somewhat brief blog but that's everything summed up really

Wednesday 7 December 2011

Lung function drop

Well the last week has been what I would describe as slightly rocky. Since tx I have had minimal problems and had an amazing recovery. My lung function was fev1 98% and 103% so pretty damn good. I had been exercising 4-6 times a week with various class's and gym work. But this last week hasn't been so good, in the run up to this week my exercise had tapered off, I was becoming increasingly tired and lost a fair bit of weight. So last Wednesday I was doing a sign up stall but I had woken with awful stomach pains, unfortunately new lungs does not in anyway mean I'm cureds of CF but my lungs are cf free. I decided not to eat as I knew I had a stomach blockage building, next thing I knew I was very faint and feeling extremely faint. So I packed away and off to the hosp I went and x-ray later and it was confirmed, I had a nasty blockage, so down with the ng tube I went and started to put gastrographin down slowly over night, gladly the rocket fuel like stuff worked and my pooing regime returned. I had also been low on magnesium and had a little top up and some fluids as I was very dehydrated.

So back as home I had been having a few problems with my diabetes lots of high sugars, peeing like an elephant and drinking excessive amounts, I also had lost about 4 kg this was actually the first sign that that it was my sugars that were bad, yes I know I know I should check regularly enough to know it was my sugars but I had got it all under control and thought it might remain predictable and safe. Wrong.  So I started checking v. regularly straight away and next thing I know I'm getting readings of HI on my monitor which means its above 35 and a possible chance of ketones, which are very bad. So I started upping my insulin one evening but nothing was happening and several hours later it was still HI so I was advised to go to A&E off to honiton A&E I go, we have a very basic A&E hardly worth visiting but I thought a simple thing such as high sugars would be acceptable to deal with, apparently not. all I wanted to know I didn't have ketonotis but no all I got was a silly reject doctor telling me how to manage my some what brittle diabetes. Not helpful to say the least as I'm pretty sure he didn't even know what he was talking about. Apparently my lung transplant may have been serious but my sugars are more serious, I'm guessing he didn't see the documentary then (laughs to self) Anyway my sugars are still going nice and high and are not becoming much easier to manage despite regular monitoring and careful insulin management, Today I had a massive hypo of 1.9. Very scary, my heart was racing, my breathing felt scary again and all I wanted to do was lay down while I shook and sweated manically, but I had some jaffas and dinner and all was right again.

Which brings me to where I am now, London, Harefield hospital. I did my lung function the other day and didn't reach over my 4 litres that I usually do on my home monitor and as I looked back I realised that actually iv dropped quit a bit over a period of 2 or so weeks approximately 13%/15% not good, I left it over night, nebbed and physios and repeated in the morning yesterday and that when I rung Harefield who said to come to clinic today, so me and my mum made our way.

My lung function was roughly the same as last time I was here but I had gone up since then and it had come down by my home Spiro, my x ray looks good and my chest sounds better than it did 2weeks ago when I started pulmozyn because of hard lumps of flem. But it was decided I was probably due a bronch as I hadn't had one since tx and a ct. So I'm going back in 2mz morning and staying over night for ct and bronch and then we will decided a plan of action, possibly IV's or steroids depending on rejection or infection, both extremely common in early days but must be tapped on the head asap before causing permanent damage and stopping it tapering off anymore of my lung function. I personally think Its infection, I'm coughing alot still and it feel all a bit irritable.

So That's all really I will let you all know whats going to happen. all in all its no big deal and im not worried. In fact think im a little bit lucky as iv got away with out any blips so far until now.

Friday 2 December 2011

I cant seem to reply to my comments but heres my reply.

Hi everyone,

Thank you so much for all your comments, everyone who said they have signed up to the organ donor register, Its extremely encourageing that the documentary has made such an impact.

To the person who said 'lets not forget about the donor family in all this' please be assured I have never for a second forgotten about my donor or there family, I think of them every single day. I have also brought a bear to hang on my Christmas tree in the honor, a small thing, but I'm afraid its all i can do, believe me I have grieved for my donor and continue to do so. If there life could have been saved over mine I would choose that every day but they were already gone, but there gift lives on and I continue to live everyday to the up most full.

I also ask everyone to take a thought for my donor and there family especially this Christmas, this is an amazing Christmas for me, but for a family out there its the first without there loved one. So please take a minute to think of the brave family that allowed me to have this gift.

I have received amazing reception from the documentary, all completely positive. Lots of people saying they are now signed up of going to do so.

If you haven't done so yet here's the link Organ donor register

Iv also been holding organ donation stalls int he run up to Christmas, Iv done 2 so far and signed a total of 113 people, my next is tomorrows. Wish me luck.