A decade on from diagnosis

Selfie of Laura (white woman in her 40s with dark hair and dark rimmed glasses) lying in bed, slightly smiling. She holds her hand up in the foreground with her fingers crossed, forming an X shape.

Today marks ten years since I was diagnosed with heart failure. Although the anniversary (and this time of year in general) can be a bit tricky, it’s become more and more of a positive occasion for me over the years.

I had been looking forward to this date for many months. Dr Google*, back in 2011, told me I’d be dead within five years and instead I find myself 2×5 years on, being far from death and (until recently) the epitome of stability, managing my condition with medication and my CRT-D, feeling pretty relaxed and OK with it all.

Well, of course the rug has been pulled out from under me these last few weeks and I’m marking ten days on the heart transplant list as well as ten years with a heart failure diagnosis. Soon I’ll have all different medication and a different device, or maybe no device at all. Heck, I won’t even have the same heart.

What’s the moral of this story? I don’t think there is one really. I guess all chronic illnesses carry an element of the unknown, ups and downs – sometimes when you least expect them. I still feel like I’m in a really good place on this 10th heartiversary, still feel like I’m journeying positively through the challenges of living with a heart that is gubbed, still being taken good care of.

The average survival following heart transplant is 14 years and there’s every reason to think I’ll survive much longer than that. Ten years from now I’ll probably be crossing two sets of fingers, celebrating twenty (XX) years post heart failure diagnosis and maybe ten (X) years with my second heart.

Kind of feels appropriate to mark this decade with a new challenge. Nobody said it was going to be easy. That’s life! C’est la vie! D’accord. OK. Ten. 10. X.

*Dr Google is a QUACK and should NEVER be consulted (or believed) on matters of health.

2 comments

  1. I am approaching the 5 year mark of my transplant and often wonder if at some point I should start counting overtime. Here is for 5 x 2 x 2 x… whatever. What I really want is to make the best of it. (Not in the “toxic positivity” perspective, just in the hopefully-good-life perspective).

    Liked by 1 person

    • I’m super aware of my diagnosis anniversary because it coincided with giving birth…and no way I can get away with ignoring my daughter’s birthday! 😂 I initially posted this on my Instagram and people have been getting in touch saying how positive I am…and that’s not really how I intended this to come across. I would say I’m starting to feel…realistic and accepting and that feels better than terror and looking for ways out of the situation. But really I’m pretty sad and ANNOYED that my tenth anniversary, that I had placed quite a lot of significance on, is suddenly all out of my control and scary and uncertain and up in the air again. But there’s not much I can do about it other than try to stop myself from becoming unduly negative. I feel so much better than I did a couple of weeks ago…but it almost feels like I’m coping by surrendering. And maybe surrender is necessary but it’s uncomfortably close to giving up. Meh, I don’t know! 😅

      Like

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