Wednesday, 5 October 2016

Heart Blog, Sternal Wires, and a Practically Impossible Situation! Text Heavy - ladies and gents, you have been warned!

Okay, so I've mulled blogging over this topic several times, and I wasn't sure if I'd ever blog about it.
But, in light of recent events, I've decided to go ahead and write about it, in the hope that it will one day help somebody else in a similar situation.

I was born with Tetralogy of Fallots (ToF) and an absent pulmonary valve. I'm not going to get into detail about it, but basically what it means is that my heart didn't form properly.
I've since had surgery to correct it, and as far as most of my life goes, it's not a big deal.
I consider myself extremely fortunate to be as healthy as I am, because I know of several instances where people have been born with similar issues and were sadly not as lucky.

Relatively speaking, it doesn't affect me too much. I get regular palpitations ( which are horrific), and I'm tired more than my friends.
However, I've 2 kids and 4 dogs, so, you know. I'm going to be tired, no matter what.

Recently however, or actually, NOT recently, as the case may be, I've been having, difficulties.

During my last open heart surgery, way, WAY back in 2009, I had a pulmonary valve transplanted into my heart. I've come across this surgery several times online described as a pulmonary valve replacement, but technically I never had one to begin with, so I didn't actually have it replaced.
Anyway, getting off track.
Basically, despite a few small issues, I left the hospital to recover at home.

I did not follow my surgeon's instructions, because I was an 18 year old idiot who was desperate to live a life that had up until that point been impossible, so I pretty much instantly threw myself into everything I hadn't been able to do before.
Clubbing, drinking, dancing, exercise. I found after the initial recovery period my exercise tolerance had massively increased, which of course meant I attempted everything.
I'm sure there are some people reading this completely flabbergasted that exercise would inspire so much excitement, but honestly, I was so happy.
Which led to me being silly, and trying to do too much. A few weeks after my surgery (I think it was 2 weeks) I decided I'd move the furniture around in my bedroom. I have no idea why. I seriously look back and genuinely wonder what I was thinking, but there you go.

Obviously, moving large, heavy oak furniture two weeks after open heart surgery isn't recommended, and I 'popped' my sternum. I literally felt it pop, and yes, it hurt.
A lot.

At my 6 week review I asked what would happen if my sternum began to move and I was promptly informed that I would have to have surgery to reset it>
 So I just as promptly shut up.
And things were fine. For a while.

I very quickly learnt what physical exertion my sternum could withstand without causing me pain, and I was determined not to have more surgery.
Looking back that was stupid, but I knew better.
To be fair, I managed extremely well, until 2012,when after working for a few years as a care assistant, I noticed my sternum shifting a lot more frequently.
 During one shift, I was maneuvering the hoist with a patient in it, and as I pulled the hoist towards me, I felt immediate pain in my chest. Within minutes my chest was swollen, so after my shift I went to A and E as I knew something wasn't right.
There I had an X-Ray and was then very bluntly informed by possibly the rudest man I've ever had the misfortune to come across, that I couldn't possibly have broken my wires. 
That is what I had assumed had happened. My chest now had a sizable lump directly over where one of the wires was located - not to mention the bruise that had blossomed across my sternum.
In fact, he was so convinced that all I had was 'localised soft tissue swelling'  - apparently for no reason - that he very confidently informed me (in a very patronizing tone, I hasten to add)  that it "would be practically impossible for you to break one".
And that, ladies and gentlemen, is a direct quote.

He sent me home embarrassed and in pain, and I swore I'd never go back.
For the next few years I was very careful of everything physical that I did. I took note of anything that put pressure on the painful area (certain underwired bras, lifting things a certain way etc) and did my best to avoid them.
Which admittedly worked out fine, until a few weeks ago. I lifted my two year old up to put her into her car seat, and what I can only describe as an explosion of agony went off in my chest. The pain - and bruising was so severe that for all my swearing off doctors in A and E, I eventually rang out of hours. I went down to be seen and the doctor there told me it looked like if been punched in the chest. 
Her horrified reaction gave me enough confidence to realize that something really had gone wrong. I was referred then to my wonderful surgeon, who coincidentally had been at my last open heart surgery. I had an X-Ray, which showed up nothing abnormal, but despite this, he LISTENED TO ME. He listened to what I had to say, answered any questions I had, examined my chest, and the now permanent swelling, and decided that we'd go ahead and remove it.
For about eight weeks, while I was waiting on the surgery, I couldn't wear any bras that put pressure on the swelling (So that was pretty much all my bras), I couldn't lift my kids without pain and I was constantly hunched forward to protect my chest. Anything touching it resulted in serious pain, it got so bad I could only get up out of bed a certain way or roll over into a few positions. I was also still feeding Harli myself - so ladies, you can imagine the pain.

A few weeks ago, my wonderful, lovely, genius surgeon called me in for my surgery. And low and behold, when they opened me up, what did they find?
A broken wire.
A broken wire which had been REPEATEDLY STABBING ME since 2012.

It was surrounded by a fair amount of scar tissue, which they did their best to remove, along with the closest two wires to the one causing me pain,
I insisted on a local anesthetic, instead of a general - which meant I didn't have to have another breathing tube, I didn't have to suffer ICU again, and I was home THE SAME DAY that I had my surgery. I was home and tucked up in bed within a few hours, with three gross little souvenirs,

Below are photos I had kept as a record to show the surgeon, but after a while I began to keep them for myself, and I am so glad I did as the difference in the photos is amazing.
Frankly, I don't give a toss about the scar, I'm just happy I'm no longer in pain!
However, for those of you offended by 'nudity' or anything slightly graphic, this is your warning not to look any further.

The top three photos showed the progression of the swelling from the day I lifted Rayne until a few days later. That swelling eventually subsided slightly, however I was left with a significant lump. The middle photo on the bottom row shows where the wires that were removed were located.
 The centre wire you can see quite clearly. The left photo on the bottom row was the day after the surgery, and the photo to the far right was a few days later.
I never thought I'd say this, but I was absolutely ecstatic to have a flat chest again, ahaha!

Okay, yeah my humor is weird.
Moving swiftly on.
These were the three culprits. Yes that is scar tissue on that wire. Funny story, I uploaded this photo onto instagram, and someone thought I'd uploaded a photo of my coil...
No. No thankyou.

Last photo of this evening, and this is what it looks like now,  three weeks and two days after my surgery. There is a small amount of scar tissue still under the skin, however it is extremely minimal, and it causes me absolutely no issues. Having the wires removed is possibly one of the best things I have ever done. I can even wear bras again, which is something I never thought I'd be excited about, but there you go...

The point of this post is this. I searched high and low for information regarding getting my wires removed. The A and E doctor I saw was so dismissive that I lost confidence in voicing how I felt about them. And when I did search for information, I came up with pretty much nothing.
So my hope is that this blog post might one day help someone who might be in the same situation that I was in.
Trust your instincts. If something doesn't feel right, PURSUE IT. As my surgeon said, I knew something wasn't right. I knew my own body, and had I pushed for a second opinion in 2012, maybe I could have escaped weeks of agony!
Know Better, Do Better, right?

So that's that dealt with.
Thanks for reading!

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