Letter of doomy doom doom.

I know I said I'd do a post on healthy heart food today...but I've just had a letter from my cardiologist that made my heart sink.

She talked about how the improvement in my heart function (EF remember?) was common in acute cases once drugs were administered.

Acute....that one fucking word sent me into a spiral of panic. I mean, I knew it was bad, I couldn't breathe properly when they took me into hospital and while stuck on the ward I could see my heart rate was the highest there by quite a way.

But being reminded of that by this one word...acute. Not just acute though. My symptoms were 'very acute'.

FUCKSHITBOLLOCKSARSEGRAVYBISCUITS!

The letter also confirms the waiting I have to do. She doesn't want to guess the 'degree of my dysfunction' yet.

I'll have my next scan in September. If I'm improving that's great. I just carry on. But if not...then I get a little machine put in my chest to make sure my heart doesn't just stop. But if it gets worse, then I go on the transplant list.

Today is a day where I just want to sob hysterically and scream at everything. This is not fair. This shit is just so-not-fair. I'm only 27, I do not want to die young. I have SO many things I want to do with my life before they take me underground kicking and screaming 'I DON'T WANT TO GO ON THE CART!!'



I hate having to wait for so long to know if I'm going to slowly get better. I hate worrying every single sodding time my chest twinges. I hate that I am constantly checking my pulse absent-mindedly. I hate that I feel like a fucking invalid. And I really hate that sometimes I give in to all this uncertainty and just break down.

The doc also talks about how I have a narrow complex QRS....no fucking idea what that is!

I wish in these letters they'd try and explain the terminology more. To make it less terrifying! But I trust my cardiologist, and I know there's fuck all I can do in the meantime.

So I just keep going, and I'll try to ignore this traitor in my chest who's let me down so very badly.

Time for an 80's fighting movie style montage.

YOU'RE THE BEST AROOOOUUUUND, NOTHING'S EVER GUNNA KEEP YOU DOWN!

I have been mostly working on mah fitness for the last couple of weeks, since the Cardiologist has told me I need to start walking a little bit each day.

So...I decided I'm going to start walking to the post box down the end of my road each day, and when I start getting better I'll walk to the next one - a bit further on and keep that up.

Since I'm going to the post box I'll be sending out loads of postcards, stickers, photos and stupid letters to people. So if you fancy one send me your address. I'm on twitter as @sarawezzie if you want to tweet me all your personal details (I take bank details too...or just an address.)

I'm improving bit by bit each day. Walking to that sodding box almost killed me on the first go. But a week later and I can do it without any chest pain or breathlessness. 

I've lost about a stone and a half since going into hospital in April. So I feel pretty good about that. My diet has completely changed since coming out too (out of hospital, not as a homosexual).

Next post is going to be a healthy heart diet one! I would do it today, but I can't be fucked. I'm tired after a full on morning, so I'm gunna go hang out with this furry face.

UGH!!!

This weekend was the first time I have been completely alone since leaving hospital. I thought I'd be OK. But I fell to pieces a little bit.

All I could think about is 'what happens if something goes wrong?' I'd be on my own and no one would be able to help me or find me.

It is fucking awful living with this kind of fear hanging over you. I can normally keep it in the back of my mind so it just niggles occasionally. But when you're stuck indoors with just a pair of insane cats for company...your brain goes into overdrive.

Seriously, look at this cat. He is insane. He yowled because I wouldn't let him sit on my face.

It is exhausting being this emotional. I feel like I'm coming to terms with what's happened to me, then I'll have a blip where my chest hurts or feels heavy and I'm dragged back down with an almighty bump. Then earlier today one stupid picture came up on facebook with facts about heart transplants.




I hate thinking about how this stupid heart could cut my life that much shorter and I really HATE being reminded of that too.

Knowing I have another three months to wait until I have an idea if I'm definitely improving just sucks, it sucks a big bag of hairy man balls!

There is also a huge amount of guilt that comes with this too. I feel like a huge burden on my partner and family, both emotionally and financially. Honestly I just want to go off and find a cave, curl up in my duvet, eat a huge bag of doritos and sleep until my body somehow fixes itself.

I hate the pity I get from people too. The way their heads tilt and ask 'so how're you doing?' In that irritating honey glazed tone. 'How the fuck do you think I'm doing? My heart isn't working properly and all I can think about is trying to not die!'

Thank fuck for my friends who keep me sane by making jokes at my expense.

Friend: 'You wanna watch Voyager?'
Me: 'No, Voyager fucking sucks.'
Friend: 'Pfffft, clearly your heart not working is affecting your brain ... you giant twat.'

I can rely on them to make me laugh. So thank you to every friend, family member and total strangers who have made me laugh or enquired how I'm doing (without the head tilt!) or came to visit, or called, wrote a letter, sent a pigeon, got naked and danced for me, let me watch Blue Brothers a thousand times, baked me stuff and so on.



I appreciate any and all the distractions. I'm going to go cheer the fuck up and try to make my next post less emo .... and deathy.

Some good news and some 'meh' news.

Yesterday I had my first consultation with my cardiologist since leaving hospital back in April.

I waited for over an hour to see her and was forced to stand up in the waiting room when no one would give up their seat. There should be a massive sign with 'ANY FUCKER THAT DOESN'T HAVE A HEART CONDITION STAND UP!'

To start off with she asked me if I'd had any problems with my breathing or with heart palpitations (when your heart feels like it's racing) and I said no to both. Then it was straight down to business. She said the Echo of my heart in May had shown my heart function was up from 15% to 25%.

What I mean by heart function is EF (Ejection Fraction) which is the force your heart pumps blood around the body with each heart beat. Normal levels are 45% and above. So mine is still very low.



I was a bit confused at what she said afterwards. She said there's a room for error with the percentages, so my heat could have been at 20% when I first came in or could be at 20% now. So my celebration was cut short. I'll be having another Echo in September at the 6 month mark. Then we'll have a much better idea if my heart is improving.

This is better than being told my heart was getting worse. Then it'd be brown trousers/needing a new heart time.

She then brought up a subject that's been on my mind a lot since being diagnosed with Dilated Cardiomyopathy. Having kids.

She said it's best for now if I don't try to get pregnant (well duh, I thought) and if my heart improves we can discuss the possibility of it at a later date.

The reason it would be unbelievably, monumentally stupid for me to get pregnant now is that my heart is too weak. Pregnancy is a huge strain on the body so the chances of me and a bubba surviving while my heart is working at a 25% capacity are very, very low.

I'm not thinking about having kids right this second but....this hurt. My body has betrayed me.

I spent most of my 20's in chronic pain suffering with endometriosis (not fun, look it up) and I had an operation in January to fix it, which it did. HUZZAH! But the operation put enough stress on my crap heart to push me into heart failure. BOOOOO.

But actually having that operation could have saved my life. I had no idea my heart was buggered. And apparently lots of younger people with this condition just keep going until their hearts give out. So I feel lucky. Yay me for not dying!

Good news was that my blood pressure is creeping up, while my heart rate is going down.

There is still some scar tissue on my heart and they aren't sure what's caused it. We don't know if this is a genetic condition or if it was caused by a nasty virus. As a result of this I've had to give a letter to my Mum, Dad, Sister and Brother they need to take to their doctors so everyone can get screened.

I know it isn't my fault, but I feel so horrendously guilty for bringing this on them. I'm sure it's going to end up being a virus (as are most of my doctors) but better to be safe than sorry.

Anyway. After all that I'm going to spend the rest of today stuffing my face and hiding under my duvet because of all the FEELZ I have to deal with.

Laterz y'all. 

Just a *tad* emotional...

I have had an emotional few days.

Nothing particularly horrendous has happened, but I feel a little unstable mood wise at the moment.

So far today I've cried at a Guide Dogs charity advert, the end of Kung Fu Panda 2 (POOR TINY PO  WATCHING HIS MUMMY DIE!) I cried because the cake I baked tasted like arse and finally I cried because the cat tried to sit on my face.



I have been feeling much better in myself, but at the end of last week I put a bit of weight on suddenly and my chest has felt heavy since.

Now, you have to keep an eye on your weight when you're recovering from heart failure and weigh yourself every day. Any sudden weight gain can mean you're starting to retain water again, and since mine seems to go to my lungs...this is not good.

I have a heart failure nurse I can call when these things happen, BUT she has been notoriously hard to get hold of. So I tried to see my GP. He wasn't available. So I had to go see someone else, who while being very nice, knows bugger all about my condition or situation, so was as much help as a neon condom with a giant hole in it. I am not impressed...



Eventually managed to get hold of my nurse, so upped the diuretic for a while to clear the water out again. A few days later I then tried to call back to find out if I go back to the lower dose. That was three days ago. Still not heard anything.

Now I'm a pretty intelligent person so took it upon myself to just stop taking the extra diuretic after my weight had stabilised more. But I am enraged that I never seem to be able to get the support I need . I want to know my nurse will actually call back and is keeping an eye on my condition. I also want to be able to have access to my GP when I need him.

I do not want to see a different doctor any time I have to go in for a quick check up if I feel off. I don't think it's too much to ask for some consistency in my care.

I have no idea when my next appointment with my nurse is and can never seem to get a bloody appointment with my GP.

This is making me a tad fucked off, and I think feeds into the whole 'sobbing like a banshee at the drop of a hat' thing.



I also see my cardiologist on Thursday and I just really want some good news. They still don't know what's caused the Cardiomyopathy yet, I'd like some more answers.

Can someone please hug me? And keep your fingers crossed for some good news.

I'm off to leave yet another voicemail for the nurse and to ring up my doctors surgery so I can try and get a bit more clarification on access to my GP.

I'M SUPPOSED TO STAY CALM!