Clawing back my social life...

Here's thing about having to deal with a major illness: it leaves you a bit knackered (fucking understatement of the century there). And being tired results in being able to do bugger all.

I am lucky to have a wonderful gang of friends and family who visited me every day while I was stuck in hospital, and they have continued to visit me at home while I'm in the recovery stage too.

But, I am still so very, very bored. 



I haven't been very mobile or just plain well enough to go out anywhere or do anything. Even getting up and down the stairs in the first few weeks was a struggle.

The incredible tiredness is due to a mixture of the actual Cardiomyopathy condition and the drugs I'm on to keep my heart working calmly. I was told it could take a few months before I start feeling more normal again.

As well as the tiredness I also get chest pains, palpitations if I move about too much and I ache everywhere (the result of being stuck in a bed for days)

It has been incredibly frustrating waiting for my system to get used to the epic drugs I've been prescribed.

BUT over the last week things have been looking up. I managed a few outings that lasted more than walking a few steps, then falling into my bed and sleeping for ten hours.

I've been out to the cinema to celebrate Star Trek; here's me and Spocktopus off to watch Cumberbatch kick bum.

I was taken shopping by my mother (the longer I was able to stay out the more I was allowed to buy...my debit card is crying) and on Saturday I had my first night out since going into hospital.

I went to watch some burlesque, dear readers; so off I went dressed up in my lovely leopard print dress, with my hair looking fancy and bright red lippie smothered on my lips....I was not aware however that the venue was a hardcore biker bar.  Looking like this I walked into a sea of beards (seriously EVERYONE had a beard, even the women).

It turned out to be a wonderful evening. The bikers were charming, the drink flowed (lemonade for me) and I had a wonderful time amongst great company, beards and boobs.

My lovely friend Emma carted me to and from the event. Observe her surrounded by all the hairy bikers.

I'm hoping this is a turning point and I can start going out a little bit more to stave off becoming so bored that I chew off my own leg.

The point is, it does get better. And I am finally starting to believe that.

A lovely surprise!

Hello dear readers!

A quick update. Well, since the medication tweak (smaller dose of the diuretic, y'know the one that makes you piss like a race horse.) I feel more human and mobile! 

I'm seeing my consultant in the next couple of weeks so I'll let you know what she says. Apparently she's the leading cardiologist for this type of heart condition in young people (THEY CALLED ME YOUNG!) in the UK. So I'm in good hands.

I just wanted to show you all what turned up in my inbox last night...

These were made by my amazing, gorgeous, artistic friends drawerer Jane Straw and colourist extraordinaire Owen Jollands. This was a total surprise and caught me off guard...in a good way obviously! I blubbed like a huge overweight baby.

Go look at Jane's artwork here. She is the most amazing artist. And Owen...hurry up and get a bloody website sorted!

Jane and I work together on the webcomic FANgirls. Which you can find here. Yes I'm pimping my own work, girl's gotta eat!

I just want to say thank you so so so much to both of you. I'll be putting these to good use!

xxxxxxxx

Half of Watford has seen my boobs...

I am not exaggerating. I feel as though most of Watford General Hospital has seen my breasticles.

In this post I will see how many words I can substitute for the word boobies.

When you go into hospital with heart problems you'll have your chest examined multiple times by various strange doctors, who try to break eye contact as they cup your left breast and give it a squeeze. Dudes you'll get this too.

One uncomfortable, very small doctor tried to look everywhere but my bangers. I was tempted to shimmy until he cracked and ran away screaming.

I almost asked my partner to bring in my nipple tassel collection so I could dress up for my chest exams. See if anyone actually noticed!



To begin with I wanted to just curl up and die. It did not help that the first doctor started off with the ever immortal line of 'It's nothing I haven't seen before madam!' YES IT IS! These are my honkers and you are a stranger. You haven't seen mine before sunshine.

He didn't call afterwards either...bastard!

It was titties out every morning while in hospital, as I had to have regular EGC tests done. I'll explain in a bit more detail what an ECG actually is.

The ECG (Electrocardiogram) consists of a number of little pads (electrodes) stuck to your chest, arms and legs, with wires that attach you up to a machine that measures your heart rate and checks the hearts rythum too.

After 5 days of strangers looking at your goodies your sense of shame just dissipates. My top would be off as soon as the nurse started walking towards me. This did catch me out once when the poor nurse was just bringing me my medication.

When you have the Echo-cardiogram (ultrasound of the heart) again it's lady lumps out...this time covered in jelly while a huge, rude looking implement gets pushed across your chest.

I have never felt more exposed or drained than that week, stuck on a hot and cramped ward, while being dressed, undressed and squeezed by strange men and women. At the same time I did come out feeling rather liberated. I shall explain why.

Last week I went back into hospital for another Echo, norks out and one of the nurses walked in while I was getting dressed. She looked shocked and apologised profusely, while I brushed her off cheerily and told her not to worry.

After she'd left I realised I'd been standing there talking to her with my fun bags out. I didn't feel ashamed or embarrassed.

And today I was back in again having my ECG taken, and I had another mini ECG fitted to my chest so we can monitor my heart for the next 24 hours. I look like a really low rent Iron Man. I didn't squirm or feel uncomfortable when it was time to strip.

  

This whole experience has actually forced me to take a long hard look at my body...and you know what? I don't hate it.

Well....apart from my heart. That guy's a dick.

Let's talk drugs

Drugs are bad m'kaaaaaaaay?

Unless they are designed to keep your heart working properly, so you don't drop down dead. I'm a fan of those drugs. Not so keen on the colourful side effects though.

I'm going to tell you about the medication I'm on at the moment to help my knackered old pumper going. There will also be pictures because this is EDUCATIONAL!

ACE Inhibitors

These bad boys reduce the activity of angiotensin-covering enzyme (hence ACE, because that's a fucking mouthful). The angiotensin-covering enzyme dilates your blood vessels, which makes your blood pressure go up and your heart ends up having to work harder to pump the blood through your tiny tubes.

The ACE Inhibitors make your blood vessels relax and widen, so it's easier for the blood to get through. So blood pressure goes down, heart works less, EVERYONE'S A WINNER!

Piccy of how an ACE Inhibitor works from www.cardiachealth.org

Beta Blockers

These are like the Arnie Schwarzenegger of the heart drugs world. I mean they're tough...not prone to inappropriately groping women's bottoms.

Beta Blockers slow down your heart rate. This means your heart doesn't have to work so bloody hard and means it needs less oxygen, blood and nutrients. Basically it makes your heart more efficient.

The below image from www.cardiologist.org explains it a little more clearly...poor dude, heart problems AND he's going bald.



When I went into hospital my heart rate was between 130 and 140 beats per minute. Now it's from 75-90

Diuretics

These make you wee....A LOT!

Diuretics make your kidneys increase the output of salt and water in your pee pee. So after taking them you spend the next few hours constantly running to the loo.

When you have heart failure your body retains fluid, because your heart can't pump it all out. I had a build up of fluid in my lungs and I am now fluid free thanks to these handy drugs.

The doctors may also refer to them as 'water tablets'

I'm on two different types. One is known as a Loop Diuretic, this removes the build up of fluid in my lung tissue. They're fast working getting everything out in 6-8 hours.

The other one is a Potassium-sparing Diuretic.These mean you don't get rid of too much potassium or sodium. Because your body needs these things to work properly and live!

Side Effects

With these drugs they have some very frustrating side effects, the main one is they all make your blood pressure go down...mine went way down. It was a good three weeks before I could stand up properly without falling over or feeling dizzy.

They're all pretty strong drugs so they leave me feeling very wiped out. I have been having mid afternoon disco naps just so I don't go to bed at 8pm like a little old biddy.

Also the ACE Inhibitors and Diuretics mean I have to check my kidney function and potassium levels in me blood (in case they are too low). So you need regular blood tests. And I hate needles.

The diuretics can also give you pretty nasty diarrhoea. I will not go into any more detail on that.

NO BOOZE! None at all on these. Eventually I can have the odd drink. No more nights of drinking rum from a giant silver top hat...then trying to steal said hat from the posh Soho wine bar.





















But one good side effect (well for us girls anyway) One of the diuretics I'm on can make your boobs bigger! I look forward to my Jordan sized knockers.

There are lots of other types of heart medications. If you want to know more or look up something you're taking I haven't mentioned look on the BHF website. THey have a section on heart meds and you can get a booklet from them too.

British Heart Foundation Explain Heart Medications!

I hope you have all learnt something today. CLASS DISMISSED!

Glass Half Full ...

Afternoon 

Today my Mummy took me out for a sandwich at a little vintage emporium near me. I even managed to walk around a little bit and bought myself a new dress! 

I did have a bit of a blip where a wall of tiredness hit me hard, so I needed to be helped back to the car, taken back home and into bed, where I promptly burst into tears.

It’s funny with this whole heart thing. Most of the time I feel pretty positive, but I get these flashes of really intense anger over what I now can’t do.

I can’t go to work. I was about to start temping again.

I can’t drive. I just passed my test in February AND am getting a new car.

I can’t bellydance. I fucking love bellydancing, I jiggle like a lava lamp and I have mad skillz.

I can’t walk, so running/jumping/skipping not a fucking chance.

I can’t travel into London to go see my friends. Everyone has to come to me, which is a pain in the arse.

I can’t go anywhere alone or without my phone. I even take my phone to the loo with me. I feel like a child.

I can’t fly (I mean in a plane…not literally…well I can’t fly like that either)

I can’t go up big flights of stairs, not that this was a pastime of mine.

The big one is I now worry I can’t have kids, the pressure on my heart could be too much. That one hurts the most.

The list of things I can’t do at the moment seems endless. But then I remember that each day the list of things I can do grows a little.

First in hospital it was sitting up, then walking to the loo. When I got home it was using the stairs unaided. Then I focused on standing long enough to cook my meals, standing in the shower on my own, being able to feed the cats and I can walk a little bit further each day. 

The domestic chore stuff can kiss my arse for a bit though. Thank feck for the cleaner!

And today I managed to do my favourite pastime for a while. SHOPPING!

Some of the things on my can’t do list I know I’ll be able to achieve in time, but it’s so bloody frustrating. My Mum suggested getting me a wheelchair so we could go out a bit more, but my pride scoffed at that idea. I’ll get better and build my strength up on my own.

My heart had just better keep up.

xxx

An Introduction To My Crap Heart

Hello my name is Sara and last month I learnt that my heart wasn't working properly.

That was some scary shit. Allow me to go back to the beginning and I'll explain this in full, with minimal swearing (I can't really promise that.)

Last month I was taken to hospital because, unfortunately for me, I couldn't breathe properly. After being kept in for two days I heard the doctor utter the two most terrifying words I have ever heard 'Heart' and 'Failure'.

Turns out my lungs were filling with fluid, I had a heart rate of over 130 beats per minute and I couldn't sit up without falling over.

I honestly thought I was going to die.

Until later that day a cardiologist finally came to see me. He explained that my ticker was enlarged and not working properly, which is basically what heart failure is, your heart doesn't pump properly so fluid builds up in certain organs as the heart can't flush it out.

He told me I'd be moving up to the cardiac care ward and that  he'd be looking after me, while they tried to find out why my heart wasn't working. He then gave me a friendly smack on the shoulder and said 'Welcome Aboard!' 

Welcome Aboard?! Not the best analogy when I was drowning in my own fluids.

After more days where I had an MRI, Echo, ECGs and a very fun test where they stuck a needle into my lungs, I was told I had Dilated Cardiomyopathy (DCM) and Impaired Left Valve Systolic Function (my heart is not pumping very well at all.) 

This is how the British Heart Foundation describe what DCM actually is.

If you have DCM, the left ventricle of your heart becomes dilated (stretched or ‘baggy’). As a result, the heart muscle becomes weak, thin or floppy and is unable to pump blood around the body efficiently.

This can lead to fluid building up in the lungs, ankles, abdomen and other organs of the body. This collection of symptoms is known as heart failure.

Sounds fun huh? With this new discovery found and my heart rate finally under 100bpm I was sent home with a plethora of fun drugs and no clue what was going to happen to me.

For the first week I couldn't get up out of bed with any help and I made the stupid mistake of researching my condition on the internet, since the hospital hadn't told me anything.

The internet told me I was going to die. So that was comforting.

The second week I managed to shuffle down stairs! And got out to see my Doctor, who explained to me that I wasn't going to die. If it got worse they'd just give me a new heart. Win-Win!

The third week after leaving hospital I was invited to see the Heart Failure Nurse. I wish they'd given her a slightly less terrifying name, like Heart Care Nurse, something more Care Bear like rather than giving me a sense of impending doom whenever she sends me a letter.

If you have a heart condition you'll have regular visits with a cardiac nurse. Mine is a lovely lady, she explained the damage to my heart and went through my condition in more detail. They still don't know what caused the damage but we think it's a virus. A case of the cocking sniffles probably did this to me.

She also told me that because I was far along with my heart failure, the doctors threw a whole load of drugs at me at once, to get my poor heart to 'calm the fuck down.'

My blood pressure was so low (80/40 normal is 120/80) that she was surprised I could even stand up. She changed some of my medication round and I can now stand up and walk around a little bit without falling over.

I've also got to have regular scans now to see if my heart is improving at all. I've had my first Echo yesterday and will be having a 24hr ECG next week.

An Echo (Echocardiogram) is an ultrasound of the heart. They can see how my heart is pumping, assess any damage and see if I'm improving. The ECG (Electrocardiogram) will measure the electric rythum of my heart to check that it's beating normally.

I'll get my results in a few weeks and update you all.

Right, now that shit is out of the way I'll explain why I'm starting up this blog. While being sat at home worrying my heart was going to explode out of my chest like a xenomorph, I realised something. Everything I was reading related to people much older than me. 60 years +

I am 27 years of age dear readers. I wanted to read about someone like me. I wanted to know how it felt and what was going to happen to me. I wanted someone to sympathise with.

I did not want to read about how my life could be much shorter, or about palliative care, or how I can't bloody garden as well as I used to. I am a young person. I wanted to know how this would affect someone like me.

So this is why I'm starting this blog. To educate people on what it's like living with this kind of condition, plus it's still very early days for me with all this so I'm still learning.

I hope you get something out of reading these ramblings. I'll tell you all about the drugs I'm taking next. 

Please enjoy this picture of me as a fat Psylocke drawn by one of my best friends JL Straw, it is my motivational poster at the moment.