Saturday, 9 February 2013

CHD auction

As you are all aware this week is CHD awareness week and CHD UK are holding a 5 day auction for a one of canvas that was made for them. It's a great cause so I thought I'd do my bit and show my readers the auction and hope we can help raise some funds to carry on the great work they do. Please find the link below: I'm hoping that works as I've not tried to do a link on my iPad! If not ill paste the link again so you can copy paste it into your browsers.

Thursday, 7 February 2013

Tetralogy of fallot

I have never really opened up about my condition but this is some basic information about it I'm sharing to it being CHD awareness week so please feel free to share this. In 1888 a French doctor, etienne Louis Arthur fallot which is where the name comes from it was mentioned by other doctors previous to this. It occurs more in men than women. It is a complex condition as it had four different heart abnormalities although they may not all be present each child with TOF is different. These are, pulmonary stenosis this is the narrowing of the ventrical. Ventrical septal defect (VSD) hole in the heart. Over riding aorta and thick right ventrical which means the heart is working harder due to narrowing. A baby with TOF can have tet spells which is when a baby is blue. A TOF baby is Likely to have a BT shunt which improves the blood supply to the lungs and later has a major repair which the babies heart will be stopped and put on a heart and lung machine to keep blood flowing. The surgon will then stitch a patch of the hole and repair other abnormalities. After the repair it is important to know that the heart will never be normal it will simply be repaired. An adult TOF will continue to have cardiac appointments all there life's and this is very important. An adult TOF often develops a leaky valve which may require further surgery. They may also get pulmonary regurgitation which is when the ventrical has to work harder which causes the heart to enlarge over time which may lead to a valve replacement. I myself have this currently at a mild level. Risks to adults are heart failour and sudden cardiac death. Thank you for reading x

Wednesday, 6 February 2013


So today marks the start of CHD awareness week 7 February to the 14th February is week is about raising much needed awareness on CHD congenital heart disease! As many of you know I was born with a heart condition TOF my mum new I was a poorly baby. I was born in a normal community hospital in the town I lived in then I was taken to Birmingham children's hospital for more specialist care. I wasn't I'm great shape I was given a BT shunt which helps sick TOf kids live until yes have there major repair now back in the 80s they didn't automatically do this so early on like they do now in days of being born for the very sick. so my Bt shunt was to help me until I had my repair later. I spent many many weeks in hospital! I was christened in hospital because they didn't think I would live. I was lucky enough to go home and my family and town folk were raising funds for me to have my hear operation as soon as possible they raised a lot of money I was on TV and I cried! The time eventually came one November day in 1989 when I was to have my life saving heart operation now I don't know how long I was in theatre for as my mum never told me but I'm assuming it was a long time I bet it was scary for her and my family. I eventually came through the operation with a repaired heart thanks to my surgeon and consultant who I will forever be grateful to. I started school I'm 1990 with every other child and enjoyed it I had a lot of time off because I was a sick child. In 1991 I had my arteries widened via a ballon procedure. That was the last surgery I've had I've been lucky. Over the past 28 years I have had stress tests running in a treadmill to make sure my hearts ok, echocardiograms much like an ultrasound on the heart and E.C.Gs I've been poked and proded by hundreds of doctors but I don't mind because they gave me the gift the greatest gift of all life. I'm still under cardiac care I always will be my heart is not cured it just repaired in the future it's likely ill need another open heart surgery when that time comes ill face it when the time comes. Special thanks to my heart hospital I'm London for continued support. To the staff and specialists who saved me at the children's hospital Birmingham. Also those who I have met a long the way from young at heart as we grew up together and we still keep in touch today. Xx

Saturday, 2 February 2013


I was lay on the sofa earlier with rheumatoid giving me a lot of pain in my back and hips and I thought you know what I'm a survivor I live every day in constant pain but you don't hear me moaning! I also have a heart condition which I talk about when needed. I have fort from day 1 and now as I approach my 28th birthday I want to say thank you THANK YOU to all my friends past and present my family and my long suffering medical team .. Why? Because you help me get through every day your belief in me keeps me going through the tough days and your willingness to allow me to be me even in pain makes me realise how special you all are to. With out the support of my GUCH team I'd be in a lot worse place I'm thankful every day that I can call you up and talk about what's on my mind and ask for advice. My rheumatoid team it's quite a new team as I changed team but you came through for me when it got tough you told me it was OK to be scared you told me it was OK to say I'm in pain but most of all you showed me my inner strength to get through the tough days. Xxx