Your friends are fundraising. Don't miss out, opt in.

110 %
£440.00
raised of £400 target
by 20 supporters
Donate
Lee Bennett avatar
Lee Bennett

Nicola & Lee

Fundraising for British Heart Foundation

110 %
£440.00
raised of £400 target
by 20 supporters
Donate
  • Team members: Nicola Bennett
  • Event: Cotswolds Bike Ride 2019, 12 May 2019

British Heart Foundation

We fund life saving medical research to beat the world's biggest killers.

Charity Registration No. 225971

Story

Thanks for visiting my page. I'm raising money for the British Heart Foundation's research and I'd be so grateful for your support. The BHF has helped halve the number of people dying from heart and circulatory disease in the UK but sadly every day hundreds of people lose their lives. It's only thanks to support from people like us that the BHF can create new treatments and discover new cures. £24 could pay for two hours of research by an early career scientist, but every pound helps so please give what you can to help me hit my target. Thanks!

CCTGA is a rare heart defect. Only 0.5 to 1 percent of all people with heart defects have CCTGA
 
In CCTGA both ventricles (pumping chambers) of the heart are reversed. Fortunately, the arteries are reversed too, so the heart actually corrects the abnormal development, thus the name congenitally corrected transposition of the great Arteries. CCTGA is a complex malformation in which the heart is far from being normal.
 
In a normal heart, the left-side pumping chamber (left ventricle) sends blood to the entire body. The right-side ventricle pumps blood only a short distance, to the lungs. The left ventricle is built to last longer than the right ventricle: 80 to 100 years if no other health problems exist.
 
In congenitally corrected transposition of the great arteries, the heart twists abnormally during fetal development, and the ventricles are reversed: The stronger left ventricle pumps blood to the lungs and the weaker right ventricle has the harder chore of pumping blood to the entire body. The right ventricle is not built to last as long as the left ventricle.
 
CCTGA can cause problems, particularly for the right ventricle, which must work harder than it was meant to. After many years, the ability of the right ventricle to continue to function effectively will determine how well a person with CCTGA is.


I've been pretty lucky as a child my condition never really stopped me from doing the things children do and enjoy, I've had a really active childhood enjoying all sports, body building, nothing stopped me. I even had a very job in the outdoor advertising business, I just seemed like a normal person with a normal heart. My mid 20's is when I noticed things were changing I was starting to notice different symptoms, I had a leak in my tricuspid valve, there was no plans for surgery just medication and carried on as normal all was pretty OK until 2011. This is when I had endocarditis, an infection in the lining of the heart, its a pretty serious condition and has claimed lives, I spent 6 weeks in hospital missing a lot of time with our 1st child Dexter, thankfully I was released 2 days before Christmas so we could spend our first Christmas together as a family, I continued my treatment at home and was finally cleared of endo in january, come February it was agreed that my valve need replacing and was put forward for the surgery, February 2012 I had my valve replacement, never forget my consultants words when she said "my god you got a strong heart" the recovery was hard and tough, but I felt the benefits, I felt good again, my symptoms had gone. After a year or so my symptoms started to come back, I was pushing myself so hard especially with work, long hard days with lots of travel, I took time off work and found out that I was at stage 2 heart block and needed a pacemaker, 2015 I had my pacemaker, things still didn't really improve I still felt symptomatic and notice I just wasn't what I use to be, I was slowing down. 

It wasn't all bad though after my surgery I married my wife who has been very supportive all the way through and I can't thank her enough, we've had 3 amazing children as well and it's them that gives me the energy to keep fighting and keep going. It's been a tough journey for both me and nicola, nicola having her own personal sadness with the loss of her mum, but we've been by each others side through everything and that will never be different, I'm lucky to have nicola in my life. 

Having had a good talk with my cardiologist who confirmed I am in early stages of heart failure and said that everything they can do has been done. I'm fully medicated and my only option is transplant, I'm far that at the moment, though things can change pretty quickly, the heart condition can be very unpredictable, that's my life just got to get on with it and do what I can to prevent things getting worse. The scary part was being told in my latest scan that my heart is showing signs of decline. So my aim is to improve it if I can, or slow it right down. 

I think for me it's really hard to accept the difference from how I was to how I am now, the changes scare me as I know what the future can mean, I find it hard not being able to please my kids cos I can't keep up with them, can't keep up with the pace of others it's frustrating, but with all this I still try to push myself, even if I feel it the next day I just feel I need to. I need to accept that things are changing and adapt to ways I'm comfortable with, but I do get frustrated when I see other fathers run around chasing their kids at the park as I can't do that, it's all change and just accepting it now, though I will always still remain positive and keep fighting.

We did the 30 mile british heart foundation cylce last year, and were honoured to be asked by them specifically to do it again this year and it's amazing that they want to use my story to inspire others with challenging conditions to take part too. 

This is my story and my life. 

Thanks for reading

Photos

1

Supporters

20