10/12/2011 12:27 PM
By Paul Willgoss
How to start?
At the beginning:
It was a dark and stormy night. As the small blue baby was born, little did the world know what was to come…
At the second beginning:
The surgeon came out and said that as far as he knew it was a successful operation, but the next 24-48 hours would be critical…
Some random point in the recent past:
The hiker picked up his pack, squinted through the fog at the looming hill, and trudged on…
Another random point in the recent past:
The newly appointed member of the Order of the British Empire shook his Sovereign’s hand and walked off through Buckingham Palace with his medal affixed to his lapel…
A further random point in the recent past:
The cardiologist looked at his notes. 2:38 for a half marathon, he said—going for faster this year? Yes, said the patient…
So that’s the start of the introduction to me. The full name is Paul Willgoss; I’m an adult with congenital heart disease. I have tetralogy of Fallot, and like many of us I have more than four things wrong with my heart. I’m also type 2 diabetic, which is just plumb bad luck.
What else should you know? Well, if you’ve not guessed I’m British, and what we tend to call a GUCH (Grown Up with Congenital Heart Disease). I’m heavily involved in British charities for children with heart conditions (I’m the Vice-Chair of the Board of Trustees for the Children’s Heart Federation) and work with my peers across Europe to share learning and experience so that all of us benefit.
At work I’ve what we call a twin-track career. My home career is as a scientist with another track of being a corporate services specialist—with a background in HR and programme management. One of the things I’ve been lucky with is my employer, and almost without exception my managers have always seen the person and not been too worried by the heart condition.
I’m a hiker, both solo and leading groups of other walkers with heart conditions either on day walks or on multi-day hikes across the country. I’ve been asked to split my blog between writing about my life with a CHD and my endurance events; I will try and do both, because one feeds into the other and back again.
For instance, someone recently told me I shouldn’t do all this running because she knew someone who had a bad heart (condition not specified) who was recommended to do running and then dropped dead. This wasn’t a nice thing to read three weeks before a marathon, or indeed a couple of days after I set a new personal best for a half marathon!
My heart condition is monitored closely with the full set of echo and ECG tests every year, and rotates me through some of the less routine tests as he see fit. I also monitor my heart, both my general “aches and pains” monitoring and by using a heart rate monitor for most of my activities. I know when I’m getting a cold (resting heart rate goes up by 10), I know when I’ve had a decent curry (Heart rate goes up by 20—I like my curries hot!), and I also know when I’m going along at my steady pace where my heart rate should be. I know the heart rate monitor I use will let me know if I start getting tachycardia or push myself too hard. I also can see over the years that my resting heart rate has come down; my exercise tolerance has increased and exercise heart rate has stayed steady as I’ve run more and walked less.
I hope my English version of English isn’t too Shakespearian, and that you find something of interest in this my first blog.
Marathon runner, GUCH (Grown Up with Congenital Heart Disease), long-distance hiker, charity trustee, patient advocate and whisky lover—Paul Willgoss is all of these and more. A member of the Most Honourable Order of the British Empire, his efforts both in front and behind the scenes for those with congenital heart defects have been recognized at the highest levels in his native U.K.
2 comment(s) so far...
By Lindsay on
10/12/2011 9:02 PM
Re: Introducing a British Blogger
Thank you so much for sharing this little bit of information about yourself. I was born with Tetralogy of Fallot as well and I am also a runner. It is nice to know that there are other people out there like me living life as it should be lived.
By Joleen Reynolds on
1/2/2012 5:15 AM
Re: Introducing a British Blogger
Hi Paul, I was writing a note and it disappeared so if you get it, it was not finished.
I was born with Tetralogy of Fallot over 70 years ago in March 1941. Since there was no surgery then, I was handicapped for 10 years before I had my first surgery in 1951, the Blalock,Taussig procedure. I had to attend a one story school and rest during play period. If I became too tired I would turn blue and faint. I did that on several occasions before my surgery. I never walked or ran in my life, but I did try snow skiing and tennis. I hate to walk as my legs are weak and I get tired. Wish I had done more like you. I am still active at 70, but it gets harder every year.
I want to tell you about a man in London who had Tetralogy of Fallot and was the second child operated on by Dr. Alfred Blalock in 1947 when the doctor went to Europe to teach the doctors in England, Scotland and France how to do the Blalock-Taussig shunt. Edward is my Heart Pal and we have been writing since 1998. I went to London to meet him in 2004. He is now 77 years old and has been very active until recently. He was volunteering at the hospiital two days a week and giving lectures to doctors about CHD patients and was always a patient for the doctors when they took their final tests. I will give you my email or if they won't print it, you can call Amy and get it and write me and I will tell you how to get in touch with Edward.
Joleen Reynolds firstname.lastname@example.org