Toughhearts 2014: A fixed point in space and time


That moves every two years…

The Eurohearts conferences exist in the hearts and souls of those who have been there, they occupy that special place between family and lovers and resonate with the hopes and fears of all of us.

Toughhearts 2014 in Baar, Switzerland was the latest of these fixed points, a week long opportunity to be amongst people who share something that normally makes us different, our heart conditions and the rest of the issues that these things bring.  We go from being unusual to being common, and that is a good thing every once in a while.

Toughheart 2014 was as innovative a conference as I can remember – a constantly updated website, a conference cocktail (one of many alcohol free ones designed especially for the hearty bar), a conference song and opportunities to discuss the tough things in our lives with some of those who have to tell us the tough things – the cardiologists themselves.

We got to tour Edwards’ Life Science’s heart valve plant, seeing the intricate care that is taken to hand sew the components together, hand sewn as no machine can sew the intricate 3-D shape as well. We visited Hell – or at least the caves leading to hell…

We did the politics we needed to, and chose the next venue for the conference… and the conference after that, and after that and after that…

The conferences are places where every emotion I heightened, the positives are euphoric and any downs are crashing – my advice to any who attend is that they spend some time readjusting after the conference, because from the Technicolor world the real world can seem very drab and black and white.

Every conference is tinged with the tragedies that are part of our lives, the friends who have died and those who aren’t as fit and strong as they once were. The conferences don’t shy away from these toughest of issues, but recognise them in our own way… The Greatest Football match in the world, which has now had its first proper injury, is where we remember and celebrate – and it was one of my greatest honours to lead the silent remembrance and the clapped celebration – and we play, for no greater reason than because we can.

The gala dinner is where we get to don our finery, talk in quiet corners, dance and thank the organisers – gifts from Europe and beyond were showered on the sexy, successful Swiss but most especially our gratitude and love. We wouldn’t have been there without them.

So it is back to the grey world of being normal, remembering that even with a toughheart it is possible to love and be loved.  And there is no greater point in space and time than that…

TTFN

Paul

Comments

  1. Unknown2 August 2014 at 11:33

    Couldn't have put it better myself. I'm going to share on my page if that's ok. It puts things into perspective.

    ReplyDelete
  2. PaulWillgoss2 August 2014 at 12:15

    Share away...

    ReplyDelete

Post a Comment

Popular posts from this blog

Something a little bit political...

Well the legs still don't want to run, walk and climb is fine, run makes them feel a bit leary ... Probably the two most contentious words in the congenital heart world (UK branch) are "safe and sustainable", a quick trawl of the support websites or facebook will show many a group being set up to save a hospital or a ward. I won't be joining any of them. Not because I don't care, but because I care too much. The origins of Safe and Sustainable go back to the Bristol Hospital Enquiry, and quite simply this is designed to ensure that the surgery that heart kids get is the the most appropriate, done by well trained and supported surgeons who are used to doing the operations and are in a surgical setting which are designed around the needs of the child going through the surgery and their family. Is that too much to ask? I don't think so. I want every heart kid to get the best surgery available to them, I want their parents to be given the best advice, support...
Read more

12% of a plan…

  It’s been a month.     A month since the new heart valve was inserted… the chaffing has died down, I’ve been sensible and built my walking up, restarted my apple fitness plus bits and bobs (boy has it been a long time since I bent like that, or cycled/spun like that) and I’ve been for two runs – a gentle 3k which worked as a prelude to my return to my local parkrun… I finished, my tally went up 1, and I remembered just how tough it is to run the first mile on so soft, dry sand… In hindsight I would’ve been better to walk the first third and conserve my energy (and pool of fitness) to the prom and the grass thirds…   Relive 'Return to Parkrun!' Yes, it does look the first bit is out to sea…  Monday was a random day off work to get out and do something, so with a bit of head scratch and some nifty plotting on the OS Mapping app I wandered along the canal, and then down the Transpennine Trail & “loop line”… Almost pancake flat, I know...
Read more

It’s a kind of magic (the science kind)…

  Well, operation done – I have a funky new valve and a bit of a sore groin.     I was in hospital for 28, sleepless, hot, hours and unconscious for about 4 of them.     While the insertion points for the three catheters I had in me in at the same time heal it’s a case of taking it easy, let my body get over the various manipulations (sore throat, the impact of the still there frozen shoulder) and the simple lack of sleep from stress and some noisy neighbours on the day ward I was on.  There’s really not a lot else to say… I went in, did the usual pre-op checks, had a chat with the interventionist, had a chat with the anaesthetist, signed the all-important consent forms (kids – that’s when you know you’re an adult; parents, that’s when you know your kid is in charge), was wheeled across to a hybrid cath lab… laid down, bit of banter with the team and the next thing I knew I was waking up, sore and not actually knowing whether the funky valve had fitted me…...
Read more