It’s been two weeks & three days now since my last appointment with the Cardiologist, one of those “news you are not expecting” appointments. I have to see him regularly because I have Marfan Syndrome, a rare connective tissue disorder. I had no reason to believe this appointment would be any different.

I usually leave the cardio clinic feeling relieved; relieved that my heart is still unaffected.

 

But this time it was different and I came out of the doctor’s room with his words still twirling around my head. He gave me the results of my last echo, he told me it looked reassuring overall but my aorta had stretched very, very slightly.

 

He said it wasn’t anything to worry about at this moment as the stretch was so minimal, but it needed to be kept an eye on as usual.

 

I tried to compose myself whilst I took everything in but the panic had already risen inside me because I was not expecting this. I thought he would tell me my heart was just the same as it is every other time, but no, I was wrong. He was telling me there was a problem, a very small one that wasn’t worth worrying about, but it was too late for that now because I was already scared.

 

What if my Aorta carries on stretching now that it’s begun?

 

What will this mean for me in the future?

 

More medication?

 

An operation?

 

What if it worsens quickly?

 

I can’t even discuss my fears with anyone because it will seem like I’m over-reacting. The Doctor told me not to worry right now so why make a big deal out of it?

 

I know that’s what people will think, but I’m not a rational person, at times like these. I will get carried away with my thoughts because I can’t help it.

 

If you want to read more about how Lucy’s feels about life with Marfan Syndrome – click here.

 

How do you cope when you get “bad news” followed up with a “but don’t worry about it for now” from a health professional? How does it make you feel? Share with us, so we all feel less alone.

 

 

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I’m Lucy & I was diagnosed with Marfan syndrome as a teenager. I’m an occasional blogger who often discusses life with chronic illness/health conditions. I also like coloured eyeliner and piercings. I’m from North West England. U.K.

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