Somerville Foundation Conference 2016

Mr C and I went to the Somerville Foundation‘s annual conference on Saturday. As I may have said before, Mr C refers to this event as me being with my own kind, which is true. The powers that be are thinking of stopping the conference, which would be such a shame. I can see where they’re coming from – the Foundation’s funds are diminishing rapidly and I expect the conference is one of their biggest outgoings – but for us, the people with CHDs, not having the conference anymore would be a big loss.

It’s not just the fact that it’s an informative and interesting event, but it really comes back to Mr C’s joke about being with my kind. Yes, we are with ‘our kind’: people who have been tested, prodded, invaded, cut open, had our rib cages sawn in half, been injected, sedated, medicated, treated, mended (for now). Someone once told me that having open heart surgery has a similar effect on the body to a bad car accident – and here we all are,  in this room in a fancy hotel in Leicester, walking around, laughing, eating, thinking, discovering. Living. I think we need this, we need to be together and to not feel like the minority, the different ones, for a change. I think we deserve this company of our fellow survivors and the opportunity to share our stories and be properly understood.

img_20160917_134204
A badly lit picture of lots of people with congenital heart defects (and Mr C) having lunch

Anyhow, as usual, it was lovely to see everyone (well, nearly everyone, some people couldn’t be at the conference this year, which was a shame. (Hi Jo!)). I think my favourite talk was the one about developments in non (well, less)-invasive surgery – carrying out surgery using cardiac catheterisation  We’d heard about it at conferences before, but this was the first time we actually got to see and handle some of the devices that are used. I took some pictures:

img_20160917_110534
A cow’s heart valve. This folds down and is passed via catheter into the heart to replace a damaged valve. I have a replacement valve but mine is a pig’s valve.
img_20160917_105222
This device folds down (a bit like an umbrella, but much more intricately), and is passed into the heart via a catheter. Once it’s in place it is opened out and used to ‘plug’ a septal defect (where there’s a hole between two of the heart’s chambers – ‘hole in the heart’) – one of the defects I was born with.

I also appreciated the talk from Anne Crump (the SF’s Mental Heath Support Worker) about dealing with anxiety relating to having a heart condition. Again, we’ve heard Anne talk about this before, and I was expecting it to be a bit samey, but actually, I realised I needed to be reminded that it’s OK to be anxious about stuff. In a way, it would be more odd if we weren’t sometimes worried about our heart conditions! Recently, there has been more research about the psychological effects of growing up with congenital heart disease, even post-traumatic stress disorder, which seems quite extreme, but actually isn’t that unlikely, given what some people who’ve had multiple surgeries and other invasive medical procedures have been through. Sometimes I think we just need to give ourselves a break!

Another highlight was Kate’s talk about her bike ride from one end of Ireland to the other. An amazing example of hard work, determination and perseverance; Kate was raising money for the Somerville Foundation. Her blog is well worth a read.

If there isn’t a conference next year I hope we can all find another way to meet, but I’m not sure that this is very likely, given logistics and people’s commitments etc. I think sometimes it take an organised event to get people together, and I’m not sure we can rely on people to take it upon themselves to set up meetings,  but perhaps I’m just being pessimistic! Anyway, we shall see.

 

Advertisements

2 thoughts on “Somerville Foundation Conference 2016

  1. It sounds like the annual conference should definitely continue in one way or another. You always come back sounding very positive having enjoyed everyone’s company and the talks about all the new developments.

    I really enjoyed reading Kate’s blog about her sponsored bike ride from one end of Ireland to the other. She is a good writer and an inspiration. By coincidence I have just been reading ‘Freewheeling Through Ireland’ by Edward Enfield.

    The talk about anxiety sounded very useful. I got a book out of the library recently called ‘The Anxiety Survival Guide for Teens’ by Jennifer Shannon. A relative of mine had a panic attack recently and I wanted some information. I found it to be an excellent book, explaining why we get anxious and the different types of anxiety and how to cure yourself. In fact it has helped me a lot as well (even though I am not a teenager) as I can be a worrier sometimes. It also has lots of amusing cartoons of monkeys – you will have to read the book to find out why 🙂

Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s