Patches Bravehearts/Famous for a Broken Heart.

This is another double blog post. But that's because helping one thing got me thinking about the second. 

Patches Bravehearts

Patches Bravehearts was set up by my good friend Hayley, she's a Twitter friend, someone who I met thanks to the internet and tweeting about my heart condition. She then turned into a very good friend, faithful counsellor and until only a few weeks ago we had never met. And until she reads this I don't think she'll realise just how valuable she is to me. I may have mentioned her before, but not for a while I know and in the past few months Hayley, without even knowing it has become so important to me because Hayley had the same surgery as me 6 months before I did and she's told me everything she can to reassure me and prepare me for what I was going to go through. But Hayley's so much more than that, she's now a wife, she's a Mother and she's an excellent and caring friend. She is passionate about spreading the message of CHD and through that she is the founder of Patches Bravehearts. 

This inspirational young woman has set up a subgroup to the charity Patches Heart Group, set up by Maria in 2011 support parents of Children with CHD. You can see the website here. And having been friends with Maria for a while, Hayley took the decision to set up a sub group of the charity, called the Patches Bravehearts. This particular group is for teenagers and adults when they stop being the parent's children and become the patients themselves and actually having to understand it this time. Supporting the patients themselves emotionally as they go through life with a CHD, that's the main aim. 

It started off as a Facebook group and is now growing into so much more.

Now as you know from previous posts, a lot of the time we bimble along without it affecting us, and then we're told that something's happened, or we have to have surgery again or something and suddenly BAM! there it is, staring you in the face all big and scary. Basically, to stop it all being big and scary, we all need our own Hayley, someone who very recently has been there and done it and can tell you all about it. So that's what we're trying to create. She's inspired me and I've jumped into helping out with both feet. I now help her with the Facebook and started making us a website. We jointly run the Twitter account and I'm starting a newsletter for the members of the original Facebook group and those that fill in the form on our website asking to be on the mailing list. 

Tonight, that little website I've been making was finished and we are now live, which is very exciting, you can find us here. So now we've created our very own Hayley, one you can access at any time of the day and doesn't have to lead the daily life that real Hayley has to lead. This Hayley is always there, whenever you need to turn to someone, anyone, but most importantly someone who really understands. 

We're hoping that our community of Bravehearts can continue to grow and by sharing our stories and experiences we can help each other. We can suddenly open up a whole new world of people that understand, to someone who thought they'd never find anyone else with their condition, we can do what Hayley did for me. 

And this is where it leads onto the next section...

Famous for a Broken Heart

Hayley and I must've been both on the Twitter account earlier at the same time somehow, as she started tweeting famous people asking them to retweet us, spread our message etc. It got me thinking, you always see a lot in the media about celebrities who's lives are affected by Cancer, MS and other horrible diseases and I'm not trying to take away from them at all, everyone deserves to be supported but apart from the awful review that was going on and the suspensions of surgery at Leeds, how often do you see CHD in the media? Especially in Popular Culture.

Did you know that Miley Cyrus has tachycardia? That Jessie J has a heart condition that affects the rhythm of her heart that only affects 0.1-0.3% of the population? That Robin Williams had Open Heart Surgery? That one of the Backstreet boys had Open Heart Surgery in 1998? That Kathrine Heigl's daughter has CHD? No. Didn't think so. None of this is totally hidden, but it's not really well known either. I don't think that it's something they want to shout about, granted, but it's also nothing to hide. I wear my scar with pride every day and I'm sure they do too with their friends and family, but it's not a condition that you see regularly supported by people in the world of popular culture and I'd like to think that maybe it could be. 

I reckon that at least 80% of the people who read my blog, when they first read it were friends of mine who didn't realise I had a heart condition. I would imagine that at least the same percentage if not more did not realise that 1 in 100 babies are born with some form of CHD. These people live their lives like anyone else for so long, but if like me they suddenly find they need that support, it would be nice for it to be well known. Everyone knows where to go to if someone in their family was diagnosed with Cancer or MS or Dementia, things like that, but would you know where to go to get support for CHD? 

I just dream of one day, having someone in the spotlight who'd turn around and say 'Yes, that condition affects me, I'm going to help them out and tell my Twitter fans about this website that are helping people like me'. Maybe, one day, one of Jessie J or Miley Cyrus' fans suddenly finds that they're not alone in this any more, there are people that can help them, people exactly the same age as them, appearing to live normally like everyone else but then having somewhere to go when they just need that little bit of help. They can find their very own Hayley. 

It's going to be a struggle, to find the ways and means of getting in contact. I'm not going ask for much, just the odd tweet, or maybe to be able to mention them on the website, show how their condition has never held them back. But just something that shows that they think of us from time to time and they acknowledge that they're in a position where they can help people like us find us. 

It's a big dream, but Jessie J, Miley Cyrus, Robin Williams and co, keep an eye on your emails in the next couple of days!



Today's little end bit isn't going to promote my own Twitter, instead I'd like you to take a look at the Patches Bravehearts website via the link above and find us on Twitter @PBravehearts. Thank you.

Appointment Number 1. Oh, and Hayley got married!

Yesterday I went back to Glenfield for the first time since leaving the hospital after my operation. Although I had to wait for ages and waiting room was noisy and crowded, I liked going back.

I saw my surgeon and another lady who I hadn't met before, possibly his secretary. They were both very, very pleased with my recovery, and couldn't believe I was doing so much as I was already. They confirmed that yes, I can be driving again now and pretty much be back to normal apart from lifting, which I still can't do until the end of October. That and horse riding are the only things, so although I'm disappointed that they won't bring the date I can ride again forward a bit, I'm not too fussed. They looked at my scars too and said they were both fine and where I was worried about infection, the scar was actually fine and didn't need treating at the doctors again. They were extremely pleased that my chest scar was 100% healed and that my femoral artery scar was almost done too.

I took the dates that my various tablets run out in to him and I've been told that once the tramadol runs out, he doesn't want me having any more of that now. After that I have to start to reduce how much paracetamol I take until I'm off it completely, still taking aspirin each morning though and will be until about 6 months post surgery. 

I'm being transferred back to my cardiologist now, who is the person that I saw for all my check ups before surgery and the person who put me forward for surgery a year ago. They want me to see him once before I go back to Uni, to bring him up to speed with everything. By the sounds of it I will just have my 6 month post op check before going back to my yearly check ups as before, so it's very nearly the end of the road for this particular operation. It's been an adventure for sure and has opened my eyes to the world of CHD so much more. 

Because of this I am getting really involved with my friend Hayley's group 'PATCHES Bravehearts'. We're a subgroup of the charity  'Patches Heart Group' and are currently a Facebook page, but I've been making the website and that's soon going to be going live and becoming a big hub of our group. We are a support group for Teenagers and Adults as we feel there is a lot less support for people of our age who are starting to go through their CHD journey without their parents help anymore. I'm so so happy to be really getting involved with this and feeling like I'm giving something back to the CHD community. 

Talking of Hayley, on Saturday night, my school friend who also has CHD, Emily and I decided to surprise Hayley by turning up to her Wedding reception! Since she had put an open invite to her Facebook friends to the occasion, it meant that Emily and I could plan it in secret and turn up without telling anyone. We decided to go on behalf of the rest of the Patches Bravehearts and gave Hayley and her wonderful husband Brett a little gift and a card from all the Bravehearts. 

Whilst we were there we met the wonderful Maria, who is the founder of Patches Heart Group and her daughter, the fantastic Casey-Beau, the reason that Patches Heart Group was started. Casey also went into hospital for surgery just 6 weeks ago and it felt quite special for the 2 of us to be dancing away together as if nothing had happened! We had a lovely night and I want to wish Hayley and Brett many, many happy years together and with their little monster Bradley! (who incidentally looked very dashing in his little suit!).

Although the surgery element of this, which was the main reason why I started this blog, is nearly over, CHD is something that's always going to be a part of me. Getting involved with the Patches Bravehearts and Patches Heart Group is something I aim to do for the rest of my life, so this blog will always have something to be talking about! I'm always going to be Cow Heart Girl.



If you would like to hear more about my day to day antics that aren't heart related, check that out here. If you would like to follow my heart story in bitesize chunks, you can find me on Twitter @CowHeartGirl.