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It’s Not Always About the Cure
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CHD and the Law: Hospital Mergers, Part 2
CHD and the Law: Hospital Mergers, Part 1
Trusting Heart
Heart to Heart in Atlanta
Becoming Part of a Crucial Mission
The Reality of the “Red Band Society”
Why Worry? It Will Probably Never Happen
Celebrating our Successes and Looking Ahead
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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

By ACHA on 8/22/2014 1:25 PM

By Paul Willgoss

One of the delights of the international GUCH/ACHD community is that in this age of social media an idea can be communicated from New Zealand to Norway, with sidesteps to the U.K. and Finland, in the blink of an eye.

The New Zealand congenital heart charity Heart Kids NZ launched a campaign to highlight the facts that many of us have scars, some more than one and that it is fine to show them off.

By ACHA on 7/2/2014 1:42 PM

By Paul Willgoss

Is my passport in date?
Yup, I’m legal to go to Switzerland

Is my travel insurance still OK?
Yup, travel insurance can be a pain in the backside for GUCHs, but I’m still covered by the travel insurance that comes with my bank account.

By ACHA on 5/19/2014 12:36 PM

By Paul Willgoss

The running magazines in the U.K. have two approaches to advising runners after they’ve done a marathon: 1) You’ve done it, now go do something else (probably shorter), and 2) You’ve done it, now get faster!

I’m in neither. I’m this one: I’ve done it, after six long years I’ve done the London Marathon, I’ve smashed my personal best (PB) by 12 minutes, I’ve got the medal, I’ve got the t-shirt and I know what's coming next…

By ACHA on 3/20/2014 11:53 AM

By Paul Willgoss

It’s getting close to the culmination of six years of desire, frustration and agonising waits…

The London Marathon decides its entry on the basis of a ballot (at least for ordinary mortals), and after six years I’m finally in—which has given me a refocus on training plan-based running and a desire to test myself and to do it right in ways that some of my running exploits don’t always allow.

By ACHA on 1/15/2014 3:37 PM

By Paul Willgoss

This is a Facebook status I see a fair amount... and I’m never sure about it.

I understand how people need to hate CHD, need to feel the anger that only hate can bring to put CHD in its place. And that, I think, is the key, that CHD is almost a person—it's visceral, it does things to people, and it can be hated.

Yes, there are times I hate the way CHD impacts my friends, cutting their health and lives short. Yes, I scream at the night sky in rage as another friend dies.

But do I hate CHD?

By ACHA on 12/6/2013 11:18 AM

By Paul Willgoss

If we can do this with a little yellow man… what can’t we do?

It’s between Thanksgiving and Christmas, so it’s that odd time of year where it’s dark, dank, and chilly and generally we all need cheering up. So this is unashamedly a positive blog, about a silly little thing of no consequence.

About a year ago the organisation I am very proud of being the Vice Chair of, the Children’s Heart Federation, started a fun “competition” where all people had to do was take a little yellow man to as many interesting places as possible. That to me sounded like a job for the international GUCH community.

By ACHA on 10/7/2013 12:52 PM

By Paul Willgoss

A lot of people have bucket lists – those things we want to do before we give in, start pushing up daisies or go and see the deity of your choice. For me? Well, I am greedy and have a selection of buckets, one of which is my run bucket.

By ACHA on 9/10/2013 1:50 PM

By Paul Willgoss

I got my annual cardiac check-up letter this week, and as I suspected I’ve been given a new cardiologist. My old one is retiring—and let’s face it, I’m not known for giving cardiologists an easy time!

So new cardiologist, new relationship…

I’m fortunate that with my advocacy roles I know most of the ACHD specialists in the U.K., so I know he’s an expert in us. First hurdle over, the rest plays out like internet dating. At least it can seem that way.

By ACHA on 8/12/2013 1:27 PM

By Paul Willgoss

I’m not sure where I’ve picked that comment up from, but it sums a lot of things up. A walk is, normally, easy-ish going. A challenge walk is less, or a lot less, easy—often with hills, quite often with big hills in. A walk, or even a challenge walk, will often have a couple of sit downs, maybe a defined lunch break…

A run is continuous pushing, limited breaks, lunch is taken on the hoof—if at all.

By ACHA on 6/14/2013 2:41 PM

By Paul Willgoss

We are more than our heart conditions, so let us have a good moan!

Normally this is a genuine battle cry for holistic medicine—and that’s holistic as in whole person, not in any new age, mumbo jumbo sense!

Usually, it’s a recognition that although we have our various heart conditions, some of us have attendant scars (physical and psychological), implantable technologies, occasionally funky bits and a level of knowledge about medical issues that leaves most general practitioners a tad confused.

For me, this last couple of weeks it’s been about the rest of my body not being able to do what the heart is ready and up for. I’ve been injured!

By ACHA on 5/16/2013 9:30 AM

By Paul Willgoss

One race cancelled due to the weather.

One event foreshortened due to an error on my part.

Thank you for the good luck wishes. Some things just aren’t meant to be.

It would be easy to draw the analogies to living with CHD, the sense of not knowing whether something is going to happen, and if it does happen—will it work as promised?

By ACHA on 4/26/2013 8:53 AM

By Paul Willgoss

Luck is intangible, but not insubstantial—please give me a smidgeon, for both my next big event and for something that could help ACHDers.

Last year I mainly concentrated on running, and I had a hellishly good year of it. This year is a bit different. With the distances for events I’m looking at being so long, or the terrain so extreme that my normal training routines aren’t up to scratch, my normal thinking just won’t cut the mustard.

By ACHA on 3/15/2013 1:05 PM

By Paul Willgoss

This blog is inspired by a conversation about my latest run, the Cambridge Half Marathon, and one of my many interests—personality models.

My mate expressed amazement at the consistency of my splits. Up to the point where I got tired, they were within 30 seconds of each other. This started a conversation about personalities that has ruminated on in the back of my head since Sunday and has come out of my fingertips now…

By ACHA on 2/18/2013 2:49 PM

By Paul Willgoss

There’s a “10 Commandments for Runners” floating around on Facebook; being me, I looked at them and wondered if they needed any adaptation for a bunch of ACHD runners.

  1. Thou shall never say “I am not a runner.” If you run, you are a runner.
  2. Thou shall not compare yourself to other runners. A mile is a mile.
  3. Thou shall not skimp on sleep.
By ACHA on 1/7/2013 12:05 PM

By Paul Willgoss

Happy New Year!

So, made any resolutions? They’re big business over this side of the Atlantic—the sales of diet books and get-fit-quick books are through the roof, and the sales of chocolate and sweet stuff have (possibly) plummeted.

I’ve been asked by a few people how to lose weight, and by more people how to do more exercise, normally with a conversation opener like “What’s the secret… ” or “How did you do…”

By ACHA on 12/3/2012 11:04 AM

By Paul Willgoss

I’m a scrooge… I don’t do Christmas, I don’t like the fake jollity and false bonhomie. I find most of the traditions mere marketing tools to get me to part with my money.

I won’t be having turkey. I don’t even send Xmas cards.

By ACHA on 10/26/2012 1:05 PM

By Paul Willgoss

A month ago I joined a fairly small group of people; I became an Ultra-marathoner. I started at Point A and ran and walked the 31 miles to Point B.

Don’t let that flippancy fool you, it was hard work. A warm day, a long way, some minor navigational hiccups, a long way, excellent organisers, but still it was a long way… And I smiled for almost all of the 31 miles.

By ACHA on 9/19/2012 1:53 PM

By Paul Willgoss

It’s getting closer, time has stopped being measured in months—or even weeks—and it’s just days now until I line up in Sherwood Forest and start running for 50 km (31 miles) in one go.

The Ultra is so beyond anything I’ve ever done before that the nerves are beginning to jangle; the old demons are trying to resurface.

The nerves are runner’s nerves—how will I do, will I make my target time, will I get injured in the last couple of days, how should I carbo-load…

By ACHA on 8/16/2012 8:11 AM

By Paul Willgoss

Two captains stand, as their players surround them in a circle, arms linked as the captains talk of friendship, love and those not here.

Two teams, who between them have kept the finest cardiologists of Europe (and beyond) busy for many, many years.

By ACHA on 7/19/2012 10:03 AM

By Paul Willgoss

It’s becoming real. In a little less than three months I’ll be in a coach heading to the start line for my first ultramarathon. Going beyond the 26.2 miles of a marathon for anyone must be one of the less sane things you can do, but the trick (I am assured) is continual incremental progress, building slowly and surely towards that fateful day in October.

Like so much in the lives of us ACHDers, we need to be more aware of the planning and make sure that changes are built in so that any issues are noticed, monitored and checked out.

By ACHA on 6/22/2012 1:03 PM

By Paul Willgoss

Forgive me—I’m in a contemplative mood. Put it down to how far I’ve come and how far I have to go…

First up, I’ve just done my hardest half marathon.

And despite the vomiting, the aching thighs and suspicion I should do something easier for a hobby, I enjoyed it hugely. Trail running in the U.K. is normally organised by small groups who for very sensible safety reasons have time cut-offs that I couldn’t meet, so when Great North Run (who put on the largest half marathon in the world) branch out it was time to do something I’d always wanted to try… The full details are here.

By ACHA on 5/23/2012 9:58 AM

By Paul Willgoss

Well, sort of (I’ll explain the reference at the end, bear with me)…

May is always a busy month, none more so than this year.

Marathons to run, awareness-raising to do, politicians to chat up (and not in a lusty way), nationwide reviews of services to participate in, more runs and walks to do… and the day job, and the arts course I’m doing for fun.

By ACHA on 4/11/2012 11:25 AM

By Paul Willgoss

Two walks, two weeks, two completely different ways of enjoying the Welsh countryside…

One of the delights of living in Liverpool is that by train, bus or friend’s cars, much of England and Wales’ countryside isn’t too far away.

That said, it’s unusual for me to take two walks, starting within five miles of each other, around different parts of the same range of hills that are so completely different.

By ACHA on 3/16/2012 2:45 PM

By Paul Willgoss

I’ve had a bit of a scare recently—a measurement went wrong and I was yanked in by my cardiologist for an urgent check-up. If the numbers had been actually been right then I’d probably be typing this while prepping for a new pulmonary valve. The full story is here.

Anyway, I’m not prepping for surgery, but it has had an impact. I’m a confidence runner. If I run and enjoy it, and I’m not thinking about the heart, I run and for me I run well.

By ACHA on 2/13/2012 12:56 PM

By Paul Willgoss

My definition is an athlete is anyone who does a couple of things:

  1. Trains for something—has a goal in mind and works towards it
  2. Times his or herself—just to check for improvements
  3. Keeps going—also known as sheer pig-headedness

So, anyone who signs up for any event—be it a 5k walk in their local park, a 10k run, a half marathon or anything—really is an athlete. That we have a heart condition is just an added complication.

By ACHA on 1/18/2012 10:42 AM

By Paul Willgoss

This is an unapologetic endurance athlete-type blog, which is why I’m starting off recalling an HR conference in deepest Yorkshire.

I had the pleasure of seeing a business guru do his guru-thing to an audience of suited women and men. Although most of what the presenter, Jim Collins, was saying went the way of much guru-isms, he did come out with something that made me think.

The BHAG: Big Hairy Audacious Goal

By ACHA on 12/19/2011 11:15 AM

By Paul Willgoss

As others watch their flocks by night, a walking group leader starts the process of working out the routes for 2012…

I’d love to say this is a military-style planning exercise, with a sandpit, flags and a detailed breakdown of each potential walker’s preferences for walking, and in an some ways it can become that. However, at the core the GUCH (Grown Up with Congenital Heart Disease) Walking Club is a simple ethos—get out there and enjoy some of the finest countryside in the world (I freely admit I’m biased).

By ACHA on 11/21/2011 2:31 PM

By Paul Willgoss

I’m officially middle aged!

I’m 40.

My friends have done me proud with their range of useful, delightful and just plain weird gifts. Being one of the last of my friends to reach this significant milestone of life means they get the chance to reap revenge for the various insults masquerading as gifts they’ve suffered over the years.

However, a sizeable contribution to a new heart rate monitor/GPS watch was part of the present. Which, trust me, I will be abusing over the coming months. I say abuse, as it’s a waterproof triathlon watch, and all I’m going to be doing is running, walking and climbing, often for a long time, and in rain, dry weather, snow—actually, abuse is about right!

By ACHA on 10/31/2011 1:07 PM

By Paul Willgoss

The three little words in the title are almost designed to irritate and annoy…

Why?

As a school child, a doctor’s note was needed to “prove” my heart condition was such that I couldn’t play sports. I then needed another one when the advice changed and I was allowed to.

As an adult, I needed a medical exam with a note from my doctor to join the civil service.

As a half marathoner, I needed a doctor’s note to join the gym.

By ACHA on 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…