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.

Scars remind us that the past is real.

Well, as you may or may not remember, a while back I was really nervous about what would happen to my scar, as you can see here. I was worried that it wouldn't look the same and the fact that I was really nervous about it not looking properly healed, as blood and everything makes me really squeamish. Basically, it was due to change and I didn't like that. 

I've been really lucky and although I didn't really like the look of it at first, I got used to it pretty quickly and it's now almost totally healed. This photo was taken last night, which is 24 days after the op and shows nearly the full length of it. All the scabs have gone and it's all just new pink skin underneath, the only bits that are taking everso slightly longer are the very top and very bottom, but only a few millimetres at each end.

I'm so pleased with it, it's extremely neat and healing just like it should. I'm just hoping that nothing goes wrong with it now and it will be as it should be. I'm very grateful to my surgical team for doing such a fantastic job

I'm very very proud of all my scars, they define who I am and show my journey, but the one down my middle is my absolute pride and joy, it's the only one that is ever really on show by any of my clothes, any form of low-ish neck top or dress will show the top of it and it shows who I am. People asked me if I was going to cover it up until it was fully healed, so that other people couldn't see it. I was actually quite offended by that. Of course I wasn't going to, it's me and people have to deal with that, regardless if it wasn't fully healed. There are many things about my body that I am self-conscious about but my scar is definitely not one of them. I have serious scar pride and defend it fiercely. 

9 days after the op I went to town in a sleeveless, fairly low top and showed it off and I was full of pride, it showed what had happened and what I had just come through. 

I will always adore my scar and every time I look down I see it, without fail and it always reminds me of my time at Glenfield and the fact I made it though. 

Every now and then I will post more photos of it, to see how it changes over time and to see how long it takes to get back to how it looked before the op, to the scar that I so didn't want to part with before the op happened. 

I <3 my scar.

Support and Recovery, Part 2.

Here we are, looking back on a post I wrote 116 days before my operation. 

Firstly I can only repeat what I said then about the support. It's been overwhelming, I have received more support than I ever could have imagined, nearly 2000 hits on this, wonderful comments on Facebook and Twitter, texts, emails, cards, presents, people arranging to visit me, it's been fab! Thank you all :) 

Secondly, I wrote a list of things that I wanted to do whilst I was recovering. I was still at that time under the impression that it would be 6 weeks until I was totally independent and able to drive again, turns out it's 4, but for the sake of the list we'll see how much we've done half way through those 6 weeks:

1) Shrewsbury Flower Show. CHECK. Yes, we've done this one and it was the best day of my life, I can't describe just how good it really was.

2) Foremark Reservoir: Not done this one yet, hopefully soon! The fact most of my friends actually have jobs makes it hard!

3) The Zoo: Not yet, but it's in the pipeline!

4) Walk down the canal: Not quite, I went for a walk around the village with my best friend last night but the two of us avoided the canal because it was dark. We'll be back down there soon enough.

5) Take me for a picnic: Nope. This makes me sad.

6) Take me to the Mug Tug: CHECK. I kinda took myself, my parents dropped me off their the first Saturday after I came home. I went there to paint a little something for my boyfriends birthday. It's a plate with a Full English painted on it. I also painted myself a 3D word ornament. I chose the word 'Dream'. Pleased with both of them.

7) Go to Bolsover Castle: CHECK. Did that today with Mummy and Daddy Bason. Had a fabby day. I <3 Castles. 

8) Go Birdwatching: No, I haven't done this yet either.

9) Go to a museum I haven't yet been to. Nope, running out of time as well!

10) High Tea: Not yet, but there are plans for this on Thursday, yay!

Overall, it was quite a challenge to fit all these wonderful things into 6 weeks, and to have done 3 already I'm really pleased with, hopefully there will be time to do the others soon as well. 

Name Change.

Hello all. 

I've made a decision to change the name of my blog and like all good decisions it was decided when spending the evening in the pub.

The blog has changed from 'Precious Hearts' to 'Cow Heart Girl' basically because one of my friends compared me to the book/ television show 'Pig Heart Boy' to which I replied 'it's actually Cow Heart Girl'. It's a simple as that! 

Well not quite, said friend* told me that I should rename my blog that and I have for a while been thinking to myself 'I wish I'd named my blog something else'. Partly because although I'm good at spelling, the word 'precious' always catches me out and I always think there should be an extra 's' in it. Also, it wasn't really very catchy and the address was a bit too long, this is short and snappy and I like it. The whole blog was started quite suddenly and I had to think quickly to put it all together, so I think a bit of a revamp is necessary, name, address, background etc.

Not a great deal has happened to do with my heart but it did get me a dedication of one of my favourite band's songs as they performed live last night at the Shrewsbury Flower Show. For my 21st birthday my Mum had written to some of my favourite bands/ singers and Equestrian riders and told them about my upcoming surgery and how she was planning to collate signed photos from said people as a special surprise for my birthday. 

We had been hoping to go to the Flower Show to see them perform but didn't buy tickets until a few days ago, as it was so soon after my surgery I didn't know if I'd be well enough. Since I've recovered so well we decided to definitely go, I thought I'd email them and thank them for the photo and let them know that 16 days later I would be seeing them live. Having only decided to do this the day before the show and having had no response to the email I was very very shocked to hear the lead singer say 'This song is dedicated to Beth Bason'. I screamed and because I was only in the second row of the crowd and stood almost directly in front of him I put my hand up and he saw me and said 'oh she's just down here' and smiled at me. He also smiled and gave me a thumbs up at the end of the song and later on when we were all really dancing and jumping up and down I saw him look across and try and find me and see if I was jumping up and down too and he grinned when he saw I was. He didn't tell people why the song was dedicated to me but they knew and I knew and it really was special.

I was lucky enough to meet one of them (there are 11 in total!) who plays the banjo and mandolin, he's called Benji and was hanging around back stage which you could get to as there was a road running right behind the stage. I thanked him for the dedication and he replied 'Oh was that you? You look great' and we chatted and he said that I was looking really well and hoped I continued to recover well. All in all it was really special and this wouldn't have happened if I hadn't gone through this surgery. Sometimes it pays to have a slightly broken heart! 

For those who are wondering, the band are Bellowhead, which you may or may not have heard of. They are a lively folk band who sing all sorts of traditional songs but they are absolutely incredible. There are 11 members of the band and between them must play about 30 different instruments. Their live show is just fantastic and Chris Evans announced on his Radio 2 show on Friday that they were 'the best band I have ever seen perform live, better than The Rolling Stones, The Who, Led Zeppelin and other great rock bands' (for my American friends who read this Chris Evans is a Television Presenter and Radio DJ and his breakfast show on Radio 2 is the most listened to Breakfast Radio Show in the country, he knows his stuff!). There are links to a couple of my favourites by them here and here. If I ever work out how to do it, I'll upload the video I took at the gig last night.

If any of you are interested, I am about to write a whole post on the Shrewsbury Flower Show, which you can see on my other blog here.

So from now on, my Cow Heart Girl blog will proceed with the address 'cowheartgirl.blogspot.co.uk' and I am about to update the background and have just changed my Twitter handle to @CowHeartGirl. I guess it's all been a case of new beginnings since the op and this is also having said makeover.

*Hello Nancia!

Recovery.

I'm home! And I have been since Wednesday.

The Surgery went better than anyone had expected and the whole procedure was done with my heart still beating, which I'll admit, warps my mind! I don't really remember anything (apart from a hazy and horrible memory of having the ventilator out, I was only on it for 3 hours, go me!) until about midnight, where I woke up in ICU having come out of surgery at 4pm. Due to spending most of the day asleep, I annoyingly spent most of the night awake. I had a lovely nurse looking after me called Helen. She was fantastic and made me feel a whole lot better about where I was. Her and the other nurses were absolutely fantastic and at 7am the next morning she went home and a lady called Kat took over. She couldn't have been much older than me, but being stuck there in that hospital bed I felt so young and little and helpless whereas a girl probably only a couple of years older than me was doing her job and being a proper adult and well... yeah. I need to finish Uni and start being a proper adult too, basically.

Once back on the Ward on the Friday Morning, I had a truly brilliant team of staff look after me for the next 5 days. I can't even begin to tell you just how good the staff of Ward 31 are. I had the best stay I could have imagined and once the horrific Chest Drains were out (3, not 1 but 3, it was horrible) I was very comfy and happy there. I had visitors galore and a wonderful surgical team that came to check on my progress every day. I made friends with a lovely lady called Linda, who had the same operation as me the following day, we've swapped details and I aim to see her again when we're both allowed to drive again.  
I was discharged on Wednesday, only 6 days after my surgery and was very glad to be back at home. My pain is controlled well and my 14 tablets a day make me rattle as I walk along! I am recovering better than I expected and better than anyone else expected and am doing much more for myself than I thought possible. Most people who have seen me since I came home say that to look at me, you wouldn't even realise I'd been in surgery 12 days ago. I'm really pleased and look forward to spending my Summer how I wanted, having fun and enjoying my last Summer as a student.

I have so many people to thank for these past few weeks, not only the staff at the hospital, but my family and friends who have given me such amazing and overwhelming support, I couldn't have done it without that, I'd have just found it all too much.

I am using this surgery as a new beginning, once I am able to do so, I will exercise more and more regularly, I aim to try and start and stay on a healthier diet and basically use this to my advantage to stay fitter and healthier and keep my heart as healthy as possible.

This blog will continue, with my progress and with other stuff, I'm sure, but until my appointment at the end of the month I doubt anything will be written here, but if you would like to catch up with my adventures in the mean time, you can do by reading my other blog here. 

Also, you can find me in bite-size form on Twitter, @CHDHeartWarrior.

Hospital Bed

I am indeed writing this blog post on my phone (please excuse typos and autocorrect) sitting on my hospital bed. Tomorrow is the big day! 

I still don't quite know how I feel. I am still very scared but there's a strange sense of calm on the ward, helped by the fact I'm in a side room and can just concentrate on what I want instead of being distracted and worked up by what's happening on the rest of the ward.

I'm feeling very loved and special from the overwhelming amount of well wishes I have received since I found out and told people that I was going in today. 

Also, as going in today came as a shock as my date had been moved back a day, and then suddenly bought forward again, I haven't had the chance to panic. I did have a little cry earlier when I realised this was actually going to happen today and I had to pack etc, but that's been about it.

Since coming in to the hospital I had Mum, Dad and Aidan here for most of the evening and due to the side room, all 3 of them were able to be here at the same time, which was lovely. Mummy Bason is fully prepared (I think) to let people know when I'm out of surgery and ICU over the next few days and I'm very grateful for that. Her and Aidan (and Elliot the cuddly elephant!!) will be coming down to the Theatre reception with me whilst Daddy Bason waits.  I'm really glad I don't have to go through the horrific 5 hour wait that they will have to tomorrow. Luckily though I am the first operation so once they get here it should all start happening and they won't have to wait hours before it even starts. 

It's kind of strange to think that in 24 hours time from now the operation itself will be done and dusted and it will all be about recovery. Now it's actually here, I just want to get it all over and done with and start getting fit again.

My battle re-enactment has provided me with a fantastic 4 week goal; I will be at Newstead, not fighting or partying, but I will be there! See you there Tilliers and all my other SK friends!

So, until I am well enough to post again in a few days, I guess this is it. Thank you to each and every person who has read this at some point from when it started until now and to all my wonderful family and friends. I couldn't have made it this far without you. Also, thank you to Mum, Dad, Aidan, James, Sam, Charley and Amy who made my last night before this really special and Charley even made a cake in the shape of a heart!!! 

See you all on the other side! Xxx

Ready... As I'll ever be.

Well, it's less than two weeks until the big day now and this morning I had my final appointment at the dentist to get my last filling done. Have to make sure it's all in check as it's a risk of infection unless they're all done. 

There's now nothing else that I have to do until pre-ops on Thursday afternoon. I don't actually really know what pre-ops entails. I know they have to make sure I'm not carrying MRSA and that there will be blood tests (boo hiss), and ECG and an ECHO, but no idea if there's anything else.

I'm hoping that I get a chance to meet my Cardiac Liason Nurse again, to see what I need to bring to hospital with me the following week. I already have the following, which I think will come in useful.

1) iPhone- really hope we're allowed to use them on the Ward, so I can contact people and complain to my friends about boredom.

2) Laptop- From what I've been told there is wifi, and also, I aim to use it as a DVD player/ TV.

3) Michael Portillo's Great British Railway Journeys- It's a long series and secretly I'm 40...

4) The remaining 3 books of Game of Thrones- They go on forever so should keep me entertained.

5) Farmyard Onsies- It'll probably be too hot to wear them, but I currently already own a Donkey and now a Chicken (it was my leaving present from work) and since I'm having a cow's valve, I think I ought to have a cow one too.

6) I could do with getting on with some sewing, but not sure if they'll let me take that in.

7) A variety of cuddly animals- I don't care if it makes me look 3, my little menagerie will be keeping me company and drying tears the whole time.

Well. Any other good suggestions of what I should take in with me? 

Take Care everyone :) xxx

P.S Look at the location. I've come homeeeeeeee!

Day 231: We have a date.

The title is pretty self explanatory for this. Yesterday, my Cardiac Liason Nurse was in contact, and I have a date for my operation. It will be on Thursday 25th of July. That makes it 'Day 253' in my timeline on my blog. That's 22 days away from now.

My preops are going to be the week before on the 18th. 

I am terrified.

I haven't cried about it yet, which I was expecting to have done so by now, but I'm sure there will be tears very soon. I have now discussed with my Parents and Boyfriend about when they're taking time off work, working half days and all that kind of thing. 

It is slightly later than intended, by about 2 weeks, but actually I'm happy about that as I now have 2 weeks to have a bit of a 'Summer' after finishing my job here in Kent and moving back home at the weekend. I will still be well enough to go back to Uni in October, even if the Boyfriend will have to move lots more boxes as I still won't be allowed to lift them at this point! 

I think the next two weeks are going to be rather up and down in terms of emotions, trying to enjoy my break but not looking forward to what's about to happen. I text a few of my closest friends yesterday and they were all wonderful, people are already asking where I'm going to be in hospital so that they can come and see me and talking about coming and keeping me company when I'm back at home. You lovely people know who you all are and I am very grateful for all of you.

Also very grateful for the support from everyone on the 'Patches- Bravehearts' group on Facebook. And talking of the Bravehearts, good luck to Allie, who found out that her surgery is going to be 4 days after mine, we really are in this together... except for the small matter of being on different continents! 

This blog will be updated more and more now I feel, during the run up and the whole thing. I have already got my Mum to agree to write a quick post to let people know how the operation goes.

Thank you to all you wonderful people xxx

Day 228: Dates. Lack of Dates. Confusion. Lovely friends.

So I went for my appointment at Glenfield on Monday, which was my annual check up basically. It's approximately 4 weeks until I have surgery. It was all a bit odd to be honest.

I had my obs done by Karen, who is one of the Cardiac Liason Nurses, she was lovely and we talked a bit about what's going on and she said that she was going to try and get some more information on an approximate date for me. 

The appointment carried on as normal, Echo, ECG and then wait to see the consultant. Now, I know this is necessary for the number of patients they have to see each day, but having only met my consultant who I'm now under (it got changed about 18 months ago) once, at this time last year, I was a bit frustrated to be seeing the other person they have that sees half of the consultants appointments. I know they are still just as qualified and lovely people, but quite frankly, they are not my consultant and usually seems to be a different secondary person each time and the lack of continuity isn't helpful. 

I had to explain the fact they'd wanted to move my surgery forward a year and the fact they're now trying to fit it in the gap between finishing down here in Kent and starting back at Uni in October, for what felt like the millionth time. Surely my consultants should know what's going on?! I asked if I could just quickly see my Consultant again since I've only seen him once previously and the other Doctor kindly obliged and he came to see me.

In all honesty, it wasn't really worth it. Regardless of the fact that I'm having surgery in a months time, the whole thing was treated like there was nothing different to last year and that there wasn't really much to say to me. My consultant said that they had no control over the surgery and didn't even seem sure that I would be having it so soon, even though it was him who insisted last year that it couldn't wait a year. 

They then told me that they wanted Karen to speak to me again, turned out it was about dates, which she'd already talked to me about. She tried to ring the relevant person but they seemed to be out of the office, so she said that she'd email her and copy myself and my consultant into the email she sends. It still hasn't arrived.

I usually have such excellent service at Glenfield, but ever since being told I'm having surgery I've had the necessary appointments but it all seems so vague. I know that they can't tell me a date until much closer to the time, but I was still expecting to have a bit more of an idea what's going on.

I just want some clarity and to find out whether I'm ever going to have this bloody operation and if it will be at the time it should be. It already feels like I've put my whole life on hold and tried so hard to still plan things to enjoy this last Summer I have before entering the wide world of Being An Adult. I will be devastated if it all gets changed and moved yet again. I'm usually a very organised person and plan big things like this months in advance. I can't deal with not knowing what's going to happen.

Anyway, on a lighter note, my lovely friend Hayley has made a new sub-group of the charity Patches Hearts, which is aimed at adults, as there seems to be far less support and networking for adult CHD patients in comparison to children's support. If you are a CHD patient, go on Facebook and search for 'PATCHES- Bravehearts'.

Also, in a weird turn of events, a lovely school friend of mine Emily (who I knew had a CHD, we joked about the price of the schools insurance as they took BOTH of us away at once on a school trip to Germany) and I have been brought back into more regular contact as we both are now having surgery soon. We used to speak a lot before we went off to Uni, but never really talked much about our conditions after the initial conversation as our conditions had no effect on our lives at that point. We've both now had the our conditions brought back to the forefront of our lives and I'm really looking forward to seeing her when I move home for Summer. 

Take care, everyone! xxx

The 'Safe and Sustainable' review into Children's Heart Surgery was 'flawed'. Well who knew?

I'm not usually a hugely political person. I vote, yes and I try and keep a grasp on what's happening in the world, and that usually involves having some form of political knowledge. I'm not though, the kind of person that is severely right or left wing or that spouts huge political rants/ has active involvement in a political party. But sometimes, just sometimes I pay a bit more attention and as a CHD patient, the review into Children's Heart Surgery is one of those things.

I do believe that we need to make sure that all hospitals are providing the best quality care for their patients, and that there shouldn't be a difference in care dependent on what surgery you go to, and I know that is important for things to be sustainable for the future.

I guess I will always be slightly biased too, as I am a patient at one particular hospital, and naturally, the patients don't want it to be their hospital that has to cease practicing. But overall, the whole review, done by the JCPCT (which now doesn't even exist... yeah... hang in there all of you confused people) into 'Safe and Sustainable review of Children's Congenital Heart Services' was a bit of a farce. To say the least. Also, I don't count as a child patient anymore, so actually, the impact of this doesn't currently (as far as I know) have a direct impact on my own care anymore.

Public Consultations... that ignored the public
I went to the public consultations and feel that most people who got up to speak and ask questions/ make points (myself included) were ignored by the experts. They were very good stereo-typical politicians, that's for sure, but the problem is they weren't meant to be being politicians, they were meant to be experts and all they did was avoid questions, make up answers that didn't really link to what the speaker had said and ignoring people who asked questions that challenged their side of the story. The whole set up confused me too. They wanted to spend more time basically telling us what was going to happen in very complicated terms that a lot of people didn't understand, and didn't actually set aside much time to listen to the public. Excuse me for thinking that's what the whole point of a public consultation is. Overall I came away from both consultations feeling disappointed, ignored and almost like the decisions were already mostly decided, before they even spoke to the public.

I also feel that a lot of information was retained and not given to the public to look at. We weren't given much information to look at before getting to these consultations, and then were handed big packs of information upon arrival, with no time to read it beforehand to be able to see what we wanted to ask. It also wasn't easy to get hold of extra information that had been referred to, it was almost like the didn't want us to find it. 

Accessibility. 
One of the key issues regarding any average joe family when having to go through surgery is accessibility. Not only is it important for the child, it's important for the welfare of their family too. The type of care they want to consolidate is the kind of care that is the most stressful. The kind of care that makes the families more nervous than any other, the big scary operations. And they want families to be even further from their homes, and often other loved ones who are trying to offer them the care and support that they need. The support that can only come from people that know them and the family well. The people who offer the support at the hospitals are absolutely fantastic, from what I've experienced and heard, but unless you are unfortunate enough to have a child with a condition that involves them being in hospital for long periods, these people don't know you like your own friends and family. Although it would be a complete pain in the back side, ultimately if there was no other option I think families would prefer to travel further for the routine stuff than the big scary operations, as at least when travelling to the routine appointments, they are just that, routine. Going home at the end of the day type stuff, not the being in the hospital for 10 days or more after surgery stuff. (I'm not suggesting in any way people should travel further for routine things, just proving a point that the stuff they're wanting to make people travel further to is the more stressful parts that we don't want to have the added worry of long travelling distances piled on top.) They say that when the review is restarted accessibility will be given more priority, I just hope to god that's right.

Closure of Leeds and Leceister, really?
Here is the map showing where the current Children's CHD surgery centres are (nicked the photo from the IRP report, for those that want to know).

In the original proposals of the closures of surgeries, both 2 & 4 on that map were going to close. Now I'm sorry but it doesn't take a genius to imagine 2 & 4 didn't exist and think 'well that's a bloody lot of grey space with no hospital particularly close by'. 

ECMO 

They want to move it from Leicester to Birmingham. If that is the case, I'd really like someone to tell me the real cost involved of moving the facilities and retraining enough staff at Birmingham, combined with the cost of originally putting it in at Leicester and the training of the staff there. Let's see how 'sustainable' that looks when someone actually decides to answer that one.

Emergencies in the East of England (not as in East Anglia, East of the whole of England). It is widely know that a proportion of surgeries that are undertaken at these centres are emergency and not planned. I'd like to see how emergencies are going to be dealt with now, in places such as the Humber, Lincolnshire, Cambridgeshire, Norfolk etc if Leeds and Leicester are still both closed at the end of the new review.

Population Growth

Firstly, I'm going to harp on about the East/ East Midlands again (sorry Alder Hay, Bristol, GOSH, Brompton, Evelina, Freeman, Birmingham, Oxford and Southampton, you're all wonderful too!). The second and third biggest projected population increases are set to happen in the East Midlands (2nd) and the East (3rd). Just saying... Also, if we're expecting another population increase overall of 1.5 million 0-14 year olds across the country in a mere 15 years (according to the IRP report, projections are for 2010-2025), wouldn't it be sustainable to improve facilities across the 11 centres we currently have, as they would all be seeing an increase of procedures in the next 20-30 years. Instead of closing it to 7 and then having to open another one from scratch in 20 years time when the pressure on these 7 centres becomes too much. We are also seeing an increase of CHD in children, partly due to detection but partly because it may actually be on the increase. All of this will have an impact on these 7 new centres that are roughly being proposed, and I don't think it's exactly what you'd call a positive impact.

Finally, the cost of this whole process

What makes my blood boil more than anything is the fact that this process is going to have cost so so much money, and the longer it continues the longer it will continue to cost money. Down to the little things such as being provided with a brand new branded pen and notepad at both public consultations, for around 300 people at 11 locations, twice. That's around 6,600 new pens and note books, I know they bought in bulk, but still, was that really necessary? Then big things like all the legal fees that would have been paid when Save Our Surgery took the JCPCT to court. If they'd listened to us in the first place, they probably wouldn't have been taken to court. And paying all of these fancy consultants big wage packets to do... well not a lot in the end. To be quite honest, the money that's already been wasted is probably enough for you to have moved ECMO to Birmingham after all and go half way to retraining staff. Nice work.

Ultimately, this next point is for you Mr Jeremy Hunt. When this process is finally over, will you transparently admit how much it has cost the tax payer, will it be easy for people to find out? Somehow I think not.

Day 183: The future, based on my heart.

To be quite honest, I don't even know where to start with this post. It's going to be a hard one to write. It's all about having to consider my hospital care in the future, and the impact that will have on my other major life decisions.

It all started a few days ago when my boyfriend and I started talking about his plans to apply for a graduate training scheme, and having a look at where we'd want to live, if he was accepted onto it. I'm all for this by the way, it just got me thinking. 

It made me think about where I would go to hospital for my heart check ups, if I were to move permanently outside of the East Midlands. Would it be practical to keep travelling all the way back to Glenfield for appointments? For the most part, that would only be once a year, which seems ok, but I would still have to stay overnight (probably back at my parents, which would be fine) and further down the line this would impact on the family life I plan to have. Would I move my treatment to another hospital, and if so which hospital would this be? 

I'm usually pretty adverse to change. I'm fine to be flexible on a daily basis about things, like in my job and normal day to day plans, but big things like this, I'm not a fan of change. I've found it hard to keep moving back and forth from home during being at Uni and down here on Placement and things like that. I tend to work better when I have a routine for most parts of life. I also never moved around as a child, so have not yet had to move my hospital care.

I don't doubt that anywhere else in the country is better or worse than Glenfield, but I really do like it there, I know where to go, I know who I'm going to see and although my consultant has changed a couple of times, I know the staff that are in charge of my care.

After my operation in the summer I have been told that I will have to have less invasive (probably keyhole) surgery every 10 or so years, to replace the valve that they are to put in. This is also something I have to consider, if I was to continue having my care at Leicester, I would then have to consider where I would be as I was recovering from future surgery.

If I do move where I have my treatment, I will have to consider where I live in relation to the hospital I will then be treated at because I don't really want to be travelling for 3 hours to an appointment if I can help it. It's just not practical.

I know these aren't decisions I have to make tonight, and we're not certain where we will be living/ working after Uni therefore I physically can't make decisions like this but I still find it difficult to think about. Realistically, it's my boyfriend's job that is going to be more of a dealbreaker in our lives than mine ever will be, his going to be the main income we have, just due to the nature of the careers we have both decided to go into and that's absolutely fine. The realisation that a heart condition that I suffer with, will have such a big impact on decisions about where we settle and where he works, that actually upsets me a lot. I really feel like I'm holding him back on his opportunities because I'm too scared (and a little bit stubborn) to think about things changing. I guess that makes me selfish, but I'm just not sure I could deal with the change. 

I rarely have issues with my heart condition on the whole- this upcoming surgery has caused a lot of emotional strain but in my whole lifetime this isn't going to be a great deal of it. Overall I don't really have a great deal of negativity about the condition itself, it makes me who I am and the scars show my story, I'm proud to wear the scars and have something about me that makes me a little bit different from others. It's only really times like these, when I find points that it does have to be taken into consideration in this way, that it gets me down. The only other thing that it really has stopped me doing, is play rugby which although I'd still absolutely love to do, in comparison it's not so much of a big deal. 

I don't want to have to base life decisions such as where we take jobs and end up living on which hospital would be providing my care and whether I want to move my care from Glenfield. Bascially, I don't like this growing up and having to have my own house lark. It's not as fun as the movies make it seem...

Day 146: Thank you Keep The Beat!

Just a quick post to say thank you to the wonderful charity Keep The Beat for sending me my amazing 'Team Glenfield' hoodie! I've included a couple of pictures for you lovely people to see, some of you will be seeing my face for the first time, it's lovely to meet you properly. And it turns out there's quite a few of you lovely people. The stats tell me that 68 of you visited this blog after I posted the last entry! Thank you all. 

Another huge thank you to Keep the Beat though, as they have agreed to publish the blog on their website so that other young people going through the same/ similar operations can read it. I really hope that I help out some of your other lovely supporters. 

It's my 21st birthday on Saturday and I'm having a big party and have asked for money to donate to Keep The Beat as an alternative to birthday gifts, I really hope that I can write another post on Sunday or Monday saying how much I'm able to send to you guys

Check out all their wonderful work at www.keepthebeat.co.uk or follow them on Twitter @KeepthebeatUK. 

By the way, I never look good when I take photos of myself, so the goofy smile is a cover up! 

P.S. I'm on Twitter too! @CHDHeartWarrior

Day 145: Support and Recovery.

Support:
I have to write about this, because I am so grateful and so thankful for the support I am receiving from so many people. It's wonderful to know that people really do care and that I will be well looked after when it comes to having the surgery. 

No one can deny that going through something like this is emotional, so I've realised it's so important to make sure that you have people to talk to about it. This could be other patients, your friends and family, people you've met through charities or online through communities such as Twitter and Facebook, or, probably the best option, a thorough mix of all of the above. There's no point in trying to hide away from it all, you may as well embrace it as a stage in life and ensure that it goes as well as it can.

I have been totally open and honest about my surgery to anyone who I happened to have talked to about it, it's not an embarrassment therefore I've been honest and frank about what's going to happen, and people are very understanding and supportive once they know what's going on. My close friends and family have been absolutely wonderful, and knowing that people are going to be there for me during the whole process is a real weight off my shoulders. One of my best friends told me last weekend that he's going to come and see me in hospital, he lives a long way from where I'll be in hospital but it meant so much that he's thought about coming to see me. Others have promised to come and stay with me whilst I'm in the first few weeks of recovery and won't be able to drive/ take myself to do things. 

Other people online have been really kind and given me words of support, especially a lady I met on Twitter who has just had the surgery that I'm about to have, it's been great being able to talk to someone who actually knows what I'm going through. The doctors and nurses are fantastic and all know a lot, but they don't always know exactly what it's like to be the patient, so talking to someone who does has been really helpful. 

Reading advice on various charities and support groups websites has also been invaluable. It answers questions you haven't really thought about, or seem a little insignificant compared to lots of the other questions that you have for staff at the hospital, it also helps you to understand that you're not the only one and that when you feel a certain way about things, that's normal. 

I am so grateful for the support that I receive from each and every one of you lovely people.

Recovery:
Anyone who knows me knows that I hate sitting still, especially when the weather's nice. I like to be out and about, doing something and so being told that I'm not allowed to drive for 6 weeks was a bit of a devastation, especially since my operation is planned for the summer when the weather is meant to be nice (ha... we'll see). 

Due to this I have decided to think about things that I would like to do during the time that I'm not able to do a great deal, instead of just sitting at home on my laptop all day or watching films or something. Some of them are an actual day trip, some of them are just really simple things that I'd like to do to get me out of the house.

So here's my recovery list: 

1) Shrewsbury Flower Show: I've toyed with the idea of going to this for a couple of years now, a friend of mine has been a few times and always says how much she enjoys it, and this year it's going to be in the middle of my recovery time, and Bellowhead are playing. It seems this year it was meant to be, it will provide me with a nice day out and my favourite band will be there. I have already talked to my parents about this one, and it's more than likely that we will go down for it. Shrewsbury is close to where I go to Uni and I have to say, it's one of my favourite towns and I am looking forward to going back.

2) Foremark Reservior/ Branston Water Park: If there is a day of nice weather, I really hope that someone will be able to take a few of us either to Foremark/ Branston Water Park (two local reservoirs back at home), sitting by the reservoirs with music on and just generally relaxing was something that my school friends and I loved doing, and I have some fantastic memories from there, but the problem is, I usually drove! I'm really hoping a few of us will be able to go down there and someone else will be able to do the driving.

3) The Zoo: Please can someone take me to the zoo! I love love love the Zoo and really want to go, ideally Dudley Zoo, as I've never been there.

4) Walk down the canal: It's simple, but something I'd like to do, but not alone if possible.

5) Take me for a picnic: I LOVE  a picnic, I don't mind where, I just want to go for a picnic one lunch time.

6) Take me to The Mug Tug (or another paint-a-pot place close to home): I just love being able to sit and paint there :) for some reason I'm hopeless with paints and paper, but ask me to paint porcelain and somehow I manage it... plus it's fun!

7) Go to Bolsover (not Belvoir as it first said, castle confusion...) Castle please!: It's a fabby day out and will fuel my obsession with Castles nicely. Hopefully this one will be with my parents because Daddy is still the best History teacher I have ever and will ever have.

8) Birdwatching: I love it and find it very relaxing so I'd just like to go to the woods or something and relax for a few hours.

9) A Museum that I haven't yet been to: I'm not really fussy as to which, but I do like going to museums and would love to use my time during recovery to go to another one.

10) High Tea: I'd love to be taken out for a bit of High Tea, with flowery cake stands and delicate china. Surprise me on the location!

Let's see how much I can get done in 6 weeks!

Day 125: Scars/ My own worst enemy.

No, this isn't me announcing that I am releasing a new remix of Papa Roach and Stereophonics, this is a blog about two different things! 

Scars:

I have two scars from my previous surgery, one starting high up on my chest and running down to about level with the bottom of my sternum and another on my side, running round onto my back a little. They have never, ever bothered me and I have never been self conscious about what I wear to make sure no one can see them and have always thought of them as something that makes me a little different and shows my history. I don't ever get offended when people ask me about them, if it's the first time they've seen the top of my scar or something. 

This week my lovely parents have come down to visit and my poor Mum has had an operation on her shoulder 18 days ago. I have now seen her partially healed scar and it's completely freaked me out. I have no idea why but seeing it all red and not properly healed has really unnerved me and made me really freak out about what mine's going to be like whilst it's healing. I don't want to see it at all. I just want it to be looking how it looks now as soon as it's been done, which I know won't happen but the thought of having it there as a wound rather than a scar really, really upsets me. I hate the thought of having to clean it whilst it's still healing and the problems that I might have of it bleeding etc. I really really can't deal with it. I'm hoping that there will be someone I can talk to about it, even though there's absolutely nothing they can do because it's all in my head. This leads nicely onto the second part of my blog...

My own worst enemy:

In this whole run up to the surgery I'm being my own worst enemy and there seems to be nothing I can do to stop it. As soon as I start thinking about the operation I lead myself into a spiral of negative thoughts about it and work myself up about what's going to happen. If I'm talking to someone about it, everyone comments on how calm I am about it. I can rationally explain everything that is going to happen with no hint of worry or fear, but left to think quietly about it for a few minutes on my own and I just work myself up into a complete state. I become panicky and very upset really quickly and don't know what to tell myself to make me feel better. I usually end up texting one of 3 people who I tell the things I'm feeling to personally, rather than just the people who read this and they help to make me feel better but I really wish I could stop winding myself up about it. I just end up frustrated and miserable and thinking horrible things about what's going to happen.

I do try and tell myself that I'm just being silly and that it's not going to help but it never seems to stop me from having all these thoughts. I just wish I didn't have so long between now and July to keep doing this to myself. 

If anyone knows of points of contact that I could try, to try and get some support emotionally, I would be very grateful! 

Take care and stay strong Warriors

xxx

Day 110: Meltdown.

Having a massive meltdown about how much I'm going to miss out on because of my stupid operation. No matter how many times you tell me 'It's for my health' or 'you'll be so much happier when it's done' it won't replace the loss of my last Summer as a student. Nothing will replace my boyfriend's 21st Birthday which he's now going up to Scotland for because I'm a shit girlfriend who can't even put on a good celebration for that now.

Yes, I'm sounding selfish and self centered but it's me who's got to go through all of this and miss out on so much that I was looking forward to. Being told that I was going to have this operation originally in 2014, and for the Summer of 2012 not quite living up to how I wish it had. I was trying to make a real effort to make the most this coming Summer.

This is the last Summer I have being a Student, where I don't have a full time job for the Summer Break, where I'd be able to join my friends on adventures before we have to leave this lifestyle for that of full time jobs and setting ourselves up for the future. 

I'm no party animal but there were still exciting things coming up. And now all I have is the prospect of a terrifying 10 days stay in hospital (I have panic attacks every time I visit Ward parts of hospitals and even my Mum having an operation on her collarbone yesterday 200 miles from where I am has given me several nightmares) followed by 6 weeks of practical house arrest. I'm not allowed to drive anywhere and have to take it easy with how far I walk. No matter how much my friends offer to take me out and do things which I really really appreciate, I know that it's not going to be the same as what it could have been. Nothing is going to be the same and all because I couldn't be born with a heart that works.

There's a huge online community to make people like me feel special, and it really has helped but part of me still can only ever think of it a hindrance that will come to spoil things once every decade or so. I just wish it wasn't happening. I don't feel special I feel like I'm going to miss out on a big chunk of a part of my life I was really looking forward to.

Battle re-enactment is a really important hobby for me. I was born into it and after a break of several years went back in 2011. Two years later I have found my friends and was really excited to have a good season for it now I have my really good friends there, and also feel a bit more like I know what's going on, now I'm used to it again. I'm going to be able to go to 3 events between now and September and one of those I won't be allowed to take part in or even camp overnight at, because of this stupid operation. We had an excellent event planned for Scotland that fell on the weekend of my boyfriend's 21st birthday, and now I won't be well enough to go up there and won't be able to celebrate his birthday with him unless I insist that he misses out too.

Having to miss out because of my heart is killing me mainly because everyone sees me as someone with absolutely nothing wrong with them unless they know. It's so frustrating and no matter how much I get told that 'I'll feel fantastic afterwards' it's going no way to help make up for what I'm missing out on. There's no way I can get that time back.

Day 92: From The Heart and National Heart Month.

I apologise now for being rubbish and not having posted for a couple of months, but as it goes, it's just a lot of waiting currently.

I had my first appointment with the surgeon at the beginning of January, and it made me feel both better and worse. A lot of questions were answered and I fully understand what is going to happen to me, in regards to the procedure (thank you A-Level Biology) and have more of an idea as to what will happen during the recovery period. One bit that really did cheer me up (weird as it sounds) is finding out that after my op I will be part cow! Going to Agricultural college and always having a love of farms, I find this quite exciting. I also feel that it's going to make me unique, and it's not something that everyone can say has happened to them.

Overall I'm feeling ok currently, but I do go through points where I get upset about it, and really scared. I know it's expected but it's also not nice. Whilst at the hospital, we now have a provisional date. My operation will hopefully be somewhere between the 10th and the 15th of July. This means that if the operation is on the 10th, that will be Day 239. That makes it only 147 days away. Exactly 21 weeks. I will only get final confirmation of this about 10 days before hand, which is something I feel a little odd about, but I understand why it's necessary. It also could be delayed if there are any emergency cases.  My surgeon is lovely and my Cardiac Liason nurse Chris, was really reassuring and helpful.

Between now and the op I have to make sure that my teeth are in good health, which having had the check up has highlighted two minor fillings that need to be sealed before then and also I will have to have a scan on my groin to ensure that there are suitable veins in the top of my leg to wire up the Heart/Lung machine that will keep the blood going around my body during the surgery, if the veins and arteries close to my heart are too delicate/ not accesible.

Talking of Heart/ Lung machines, I saw one tonight on the ITV Tonight: From the Heart special and I have to say that really freaked me out. I have no idea what I expected them to look like, but seeing one really scared me and suddenly it seems a little bit more real. Every now and then things remind me of what's going to happen and it all seems a little bit more like it's actually going to happen now and that's a really strange and scary feeling. 

With everything that's going on for me personally, National Heart Month and the ITV From the Heart campaign have struck chords with me more than ever. On my Twitter and through this I am trying to become more active in making a difference for my condition, and due to the high possibility of moving to the Leicestershire area after University, I really want to look into the opportunity of regularly volunteering at the hospital with other young people who are going to be having the operation, or similar heart operations during their late teens/ early 20s. I know that for me this part of my life is full of confusion surrounding University and what's going to happen in the future and having this happening at the same time is stressful and inconvenient  I really hope that being able to provide someone to talk to who's actually been through it all will be beneficial to some people because I'd really like to have that opportunity right now.

For CHD awareness week I've been wearing at least 1 red thing a day, mainly my lovely red jeans (bought for the Olympics actually, but coming in rather handy) and have been putting more on my Facebook and Twitter to make people aware of conditions. I have noticed that now we're all older and the fact that I'm going to have my operation soon has made some of my friends really curious about my condition. Until now it really hasn't had a great impact on my life and although I've always been totally open about it, my friends have never really thought about it because it never made me stand out as different from any of them. It's nice to see them being interested though and being really supportive. So many of them have already offered to come and keep me company during the first few weeks of recovery where I won't be able to do a great deal. My lovely friend Julie is already planning on her 'Beth-sitting' few days!

I also feel incredibly grateful for my parents and boyfriend. I have been with my boyfriend for 3 and a half years now and although he has always known about my condition and even come to some of my check ups with me, it really is something new to him and he's been excellent. He is determined to take as much time off work around the operation as my parents are and really is intent on being there just as much as Mum and Dad, which makes me feel so grateful and happy that when I no longer live with my parents, and I have to have more minor operations in the future, that he will be there to help me (it does help that he's probably one of the most level headed and grounded people I have ever met, he's good with coping!).

My Parents are going through this for the 3rd time now, but this is the first time that they've had to deal with 'me' as such. The previous two times were just as worrying, but I was a baby so I didn't display the emotions of fear and upset that I do these days, the depression that I am likely to go through and the emotional recovery I will need will have an impact on them, and this is the bit they're doing for the first time. 

Over the next few months I have to slim down a bit to help me recover quicker after the surgery, and I have said ever since finding out I was actually going to have surgery that if I'm nice and healthy before going in, I'll recover quicker and it's an opportunity to stay fitter and healthier once I've recovered too. As I always [try and] do, I'm giving up sweets, chocolate, cakes and biscuits (ice cream, desserts etc too) for lent, and this year due to my op I aim to try and keep them out of my diet on week days right up until my operation, in a bid to shed the pounds and be healthier.

I'm not sure how much I will blog between now and just before the operation, because in all honesty, there really won't be much going on. I will be blogging shortly after my birthday in April though, as I plan to ask for donations to Keep The Beat heart charity instead of receiving gifts at my birthday party (21 this year, big party planned!), so I will write and post how much I manage to raise for them. 

Restarting the use of my @CHDheartwarrior Twitter now to share things more as and when they happen.

Be Brave, Warriors xxx