Post Thrombotic Syndrome, Nice and me.

I’m sat in Nice airport having just spoken at an event where I was invited to speak about my (patient) experience of Post Thrombotic Syndrome. Basically if you’ve ever heard me mention ‘my leg‘, that’s shorthand for ‘veins-battered-by-multiple-DVTs-leaving-me-in-constant-pain-and-struggling-to-walk. Otherwise known as PTS.

Last year I had venous stents fitted – a fairly new(ish) procedure where stents are inserted into the veins to open them up and help blood flow. Many of you kept me sane whilst I stayed in hospital for a week having a ‘re-do’ when one blocked and I had to have my blood basically turned to water and another stent added as a fix. Firstly thank you (you know who you are), and secondly several months on it’s clear the stents are doing their job. I have some annoying ongoing nerve pain sure, but that hopefully may resolve when I actually get my backside back to the gym again and lose some Christmas-overdoing-it-with-chocolate weight.

Anyway, today I was part of a session about making ‘meaningful change’ (I wasn’t even there doing impact, but what do you know, it’s everywhere). I had the joy of speaking in the closing plenary with my nurse (the wonderful Vanessa), and meeting some fabulous Boston Scientific people (shout-out to the fabulous Jodie). It was a wonderful opportunity to stand in front of those working internationally to develop/sell technology (eg my stents), and explain what difference it can make. Not in terms of sales figures, or patency rates, or broad tones about quality of life, but in actual real human terms. All I did was tell the story of my life since 2008 (abridged, of course, albeit they had to see some of my holiday photos), the limitations PTS brings and the opportunities venous stents create. It was an immensely easy story to tell, but the reaction (apparently there were tears!) told me how important it is never to lose sight of the patient. What technologies and procedures and interventions mean to them. We can throw around whatever metrics we want, but ultimately it comes down to being able to take your kids to the park and be able to say yes to opportunities in life rather than no.

I was offered the chance to do the talk via video link (rather than take 4 flights in two days) but there was a very simple reason I flew to Nice and spoke in person.

Because I could.

Thank you stents.

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