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A Wake Up Call – The Ugly Truth (Life Update)

By  28th October 2018

The ugly truth is that my heart won’t last forever and in a way, these are the first signs that prove so.

Hello everyone,

I write today lying on a uncomfortable hospital bed, waiting for tests to be done and doctors to come and see me as I was admitted this afternoon after suffering left-sided chest pain and feeling generally poorly for a few days now.

This isn’t the first time I’ve been in hospital lately. After a very good couple of years, needing only to undergo one surgery at the end of 2017 to remove an infected rib (don’t ask), 2018 hasn’t been quite as successful. Earlier this year, I was given quite the shock when a routine scan found that a few of the arteries in my heart have begun to narrow.

Of course, compared to all of the other problems I’ve had, this doesn’t seem like something that would worry me too much, but it’s been years since my heart had caused me any problems. Since I recovered from my transplant, my heart has been going steady and strong so it was like being punched in the stomach to learn that it was struggling a bit now.

An angiogram found that one of arteries was narrowed by 90%. I was fitted with a stent and the problem was solved in a matter of minutes – nothing to worry about, for now. It was only later in the year, this September that one evening at a drinks party, my heart began beating super fast – I mean double what it should have been fast.

After two days and no signs of slowing down, I went in for scans and test and it was revealed that my heart had gone into atrial flutter – when the top chambers of the heart beat faster than the bottom.

Picture of heart scan for blog

The source of all my problems in it’s, black and white, blurry, really-looks-nothing-like-a-heart, glory! And yes, all the ECHO machines are named after movie characters.

Again, thanks to the quick thinking of the doctors at The Freeman, my problem was solved promptly with an ablation. However, it was while under anaesthetic for the procedure that it was found that my heart is lagging a bit. My internal pacemaker, the same one everyone is born with, is in the words of my doctor: “lazy”.

I mean I know I leave all my assignments to the last minute and sometimes I lie in until 12:30, but to learn that my heart is barely capable of beating on its own was a huge blow. He ramped my pacemaker up to 80 so now I’m completely pacemaker dependant. The only thing is, my pacemaker is 8 years old….. and is only supposed to last for 4 years!

So this brings us back to now – tomorrow (Monday) I am getting my pacemaker changed, or should I say upgraded. My simple, outdated, one lead device will be switched to a high tech, Fitbit style, two lead device that will track my movements and slow and increase my heart rate accordingly. So the reason that I’m in hospital is to check that this chest pain isn’t anything serious before my procedure [was given the all clear and went home the same evening].

It’s been a tough few months – especially coming to terms with the fact that my new heart isn’t quite as strong as it once was. The ugly truth is that it won’t last forever and in a way, these are the first signs that prove so. This is something all transplant patients have to come to terms with. Although this is by no means the beginning of a short and steady decline, it’s certainly a wake up call for me. Things won’t necessarily get worse but they aren’t likely to get better.

In years gone by, I’ve sort of taken my heart for granted – I haven’t had any problems: no rejection, no reduced function – so now that its needed some help, it has just reminded me again how precious life really is. It’s time for me to start being healthy and looking after myself more – as a student I admit I don’t always do this.

Me with my heart scan for blog

Despite the trouble it causes me, I’m proud of my little ticker! Photo credits to Stavros,one of my cardiologists. (I know I look horrendous – this wasn’t my finest hour).

Anyway, as of now, I’m well and getting on with it – still as positive as ever. Hopefully after my new pacemaker is fitted, I’ll notice some positive changes. My chest pain is likely to be a virus of some sort so at least that’s not another thing to worry about!

For now, I want to urge you to never take anything for granted. Enjoy your life and make the most of every second.

(Sorry for the bloody depressing post – this is so unlike me. Sometimes we have to face the truth though).

See you next week with a very exciting post!

Cecilia-Joy Xx

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8 Comments

  • Oh Cissy, I’m so sorry to hear this! Your determination to look at the positives in life I hope makes people to start doing the same. Good luck with the procedure, please do let me know how it goes! I’m cheering you on and have everything crossed that everything goes to plan xxx

    • Cecilia-Joy Adamou 28th October 2018 at 8:58 pm

      Charlie, thank you much for your kind words! You’re so lovely and I really appreciate your thoughts! Loads of love to you – I’ll deffo keep you updated x

  • Oh Cissy, I can’t believe the beautiful, just post transplant, little girl I met 8 years ago has blossomed into such a courageous and talented woman. I find it hard sometimes to put into words how I feel when it comes to describing everything Iolan has been through on his transplant, and although he had a hugely rocky journey to transplant, our ride since has been relatively (and surprisingly) smooth. I hope that this really is simply a ‘brief’ period of time that in years to come you’ll look back on as just another blip to endure. Good luck with the new pacemaker Cissy. Sending all our love and best wishes, Laura & Iolan x

    • Cecilia-Joy Adamou 29th October 2018 at 2:21 pm

      Hi Laura, Thank you so much for your kind words. I remember being in at the same time as little Iolan – who I bet isn’t so little anymore! Is transplant kids are really put through a lot so it lovely to hear that Iolan has been doing well since his. Wishing you both all the best. Xx

  • Student life is always a test for anyone with a heart condition, balancing the joys of student life against the ‘be sensible for your heart’ is a pain but a necessary evil. So glad that you and the Freeman team are so on top of things. Keep safe Cissy and keep working to find the balance, I know you will always find the joy in life.

  • Thank you for your blogs – I really hope that the Drs and your heart allow as full and enjoyable time as ever. My son is a CHD child – currently 7 and hyperactive but will probably need further intervention. You have reminded me to enjoy life and help him to look after himself. Enjoy your studies.

    • Cecilia-Joy Adamou 29th October 2018 at 9:46 pm

      Thank you so much. I’m so glad you enjoy reading about my experiences and that they encourage you and give you positivity. Sending all my love to you and your son x

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