A decade on from heart failure diagnosis - British Heart Fou...

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A decade on from heart failure diagnosis

laura_dropstitch profile image

Today marks ten years since I was unexpectedly diagnosed with heart failure at the tender age of 31. I remember back then being told by Dr "Death Knell" Google that I'd be dead within five years. [Nowadays I know Dr Google is an unqualified quack who knows nothing and likes to present worst case scenarios and outdated research. Do not consult Dr Google!] Well, I've survived twice that long thanks to my tablets and my CRT-D device and am still feeling good and hopeful.

I always find this time of year a bit tricky (less so as the years pass) but I had been looking forward to the big 10th anniversary, feeling very relaxed and confident and stable in my heart failure. Unfortunately the rug was pulled out from under me a couple of weeks ago when it was confirmed that my heart function was beginning to decline (it wasn't just me getting older and lazier!) and I have spent the last ten days on the heart transplant list. I was even offered a heart already, via the dreaded 2am phone call, but the donor heart was eventually rejected by the surgeon and I was sent home again, thankfully before anaesthetic was administered.

This new development is obviously a lot to adjust to and I am finding it challenging and have had to take a step back from my PhD for the time being. But I'm still feeling good and positive overall, and fully expecting to be posting about my 20th anniversary of heart failure diagnosis in another decade's time.

Those of you who visit my research project's blog heartytales.co.uk (and/or write haiku for the zine) will probably find things rather quiet over there for the next wee while, but I WILL be back as soon as I'm able and I might do the odd informal post in the meantime, so do check in from time to time if you can.

I hope this news doesn't put too much of a downer on anyone who is coming to terms with a heart failure diagnosis of their own. It's not quite where I had imagined or hoped to be on my tenth heartiversary, but I'm still in "good health" and confident that this challenging next step will have good long-term outcomes. It's just another bump in the road of living a long and good life with heart failure, I think.

45 Replies

Sending you best wishes for a positive outcome Laura

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to jeanjeannie50

Thank you 😊

Congratulations Laura on reaching 10 years. Here's to another 10. (Just raised a cup of tea to you).

Sorry to hear you currently have 'The Chalice'. That is the term used in our house when anyone is receiving attention from the medical world.

May your time with the chalice be brief and you can get back to your studies.

Here's a Haiku for you....

Hey, Dr Google.

You on the GMC list?

You fraud and scoundrel.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to DaveTR

Thanks so much for the tea-toast, Dave, and the haiku - there’s just no stopping you! 😂 I had a pretty good run with only a very tiny chalice to carry these last few years, so only fair I do my stint again, I suppose. Hoping I’ll be able to get back to books and haiku before too long.

Milkfairy profile image
MilkfairyHeart Star

Laura, I am sorry you need to take an unexpected sabbatical.

Time to say adieu,

May the next hello be soon,

You've lots still to do.

Take care of yourself 🤗

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Milkfairy

Thank you! Yes, I'll definitely be back before long to finish the Animal themed zine xx

I will be praying for you, that you get what you need to make it another 10 and then another 10💛

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Niki_

Thanks Niki :)

Hi Laura

Very sorry to hear you have gone a little downhill, but as well you know there is at the bottom of every downhill an uphill stretch to come. You are a mentally strong young woman to whom I will be ever grateful for the help and support you gave me when I started on this journey. So stay strong we are all on your side. You do have a future with good medical support and your outlook, we will still be swopping posts in 2031

Very Best Wishes

Frank

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laura_dropstitchHeart Star in reply to Prada47

Thank you, Frank. You're my favourite 😉

Hi Laura, first congratulations on your 10 year anniversary. I’ve just had my third year anniversary. I’m sorry for your latest development and wish you all the best for this next stage of your journey.

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laura_dropstitchHeart Star in reply to GracieOS

Thank you, Gracie 🤗

Well done Laura, please stay positive you will be here in twenty years with medical help. Stay focused on you and no one else get through this and plan a celebration break with your family when its over. Thank you for the support you gave me in the last few years. message me anytime at all. A week ago l had a head ct scan for a injury when i fell over my puppy that was fine but they discovered at the front of my head a brain tumour by accident. l have no symptons but they cannot operate as it has spread a bit so l am having treatment soon to halt it in its tracks and give me time . My puppy saved my life. Take care, Love Sue x

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laura_dropstitchHeart Star in reply to kefalonia1

Oh Sue! That’s… Honestly lost for words. I hope all your treatment goes well. Hooray for your puppy - what a hero! 🏅

Onwards and upwards mate, there is a fight ahead but both of us WILL SURVIVE.xxx

just sending you a bucket load of Love. x

Congratulations on your 10 years laura sending you good thoughts.I have been recently diagnosed on October 3rd. I am sure we will all be here reading your 20th anniversary post and congratulating you on the milestone.

Take care

Donna

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laura_dropstitchHeart Star in reply to Braveoldsoul

Thank you, Donna. Good luck with everything. I know how overwhelming it feels when first diagnosed. It can take a while to find the right balance of treatment but hopefully once you do find that, you'll be feeling much better for a long time to come x

Best wishes lovely you will smash this ❤

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laura_dropstitchHeart Star in reply to ocnnll

Thank you! :)

Aww they will soon find you the perfect brand new heart to give you many decades to celebrate. Stay strong 🥰

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laura_dropstitchHeart Star in reply to Brixcos

Fingers crossed! It's nice to have so much confidence in my medical team, built up over the last decade of their care. I'm terrified about the road ahead but I know there's every reason to expect good outcomes. Thanks for your comment 😊

All the best, Jerry.

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laura_dropstitchHeart Star in reply to jerry12953

Thanks, Jerry :)

Sending you lots of positive thoughts Laura.

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laura_dropstitchHeart Star in reply to dunestar

Thank you so much, that means a lot :)

Hi Laura, you sound like a real positive person - good on you. Life is full of ups and downs, so keep the positive energy for positive outcomes. And agreed with you on the many "non factual" information online. Everyone should be careful what they read online. Monty

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laura_dropstitchHeart Star in reply to MontyReynolds

Thanks, Monty. Finding it is possible to be positive...alongside being sad and angry and scared 😅

Well done brave heart. Here's to the next 10 years! You will be in prayers and thoughts. Go forwards with your positive attitude and let us know how it's going. Lots of love to you.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Cavalierrubie

Thank you so much :) Really glad to be part of the hearty community - the well wishes of those who KNOW have been making such a difference to me over the last couple of weeks.

Best wishes to you Laura. I have only been on this heart failure journey about 20 months. I found your posts particularly reassuring when I first found this site. Your lovely positive attitude shines through.Wishing you all the very best.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Prestwick

Thanks Prestwick and good luck on your own journey. I do think there is a lot to be positive about when it comes to heart failure...though that's not to say it isn't tough sometimes!

Bless you my darling. All the best xxxx

Had a wee giggle at your comments on dr google. It really is the worst think to do looking on there. I had a stemi in April aged 43 and it says im very likey to have another one in the next year! This really put me in a flap but ive since decided that if i take my tablets like the real dr says then i'll be ok🤞 Wishing you all the best with your future journey x

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laura_dropstitchHeart Star in reply to Jules2021

Agreed - if in doubt, ask a human! Google is all about worst-case scenarios and out-of-date nonsense. Thanks for your good wishes :)

Why not a heart machine? There’s an artificial heart that you put into your body, who not fit in this case?

💐

Wishing you all the very best. Sounds like you've had quite the journey already and remain positive, well done you.

Hope you get a new heart for Christmas.

Take care

Sue

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laura_dropstitchHeart Star in reply to Nannysue1

Thanks Sue. Would rather get one for St Andrew's Day really 😂 My sister and family are visiting for a couple of weeks over Christmas (they live in France and I've not seen them since before Covid) and I'm convinced I'm going to end up in hospital for the entirety of their stay, with only minimal visitors allowed 🙈 Trying to console myself with the fact my daughter will at least have a fun Christmas with all her cousins... but I want to see my siiiiiisssterrrr!

You never know. It may all fall in to place, you certainly deserve ot to after all you've been through. We've just arrived down at our french house today, weather is beautiful.

Now it has come to this Laura, I hope that the transplant happens quickly and without any complications. You are so brave and kind to share such personal news. I feel so sad you’ve got to go through trauma and fear to recover better health but so thankful you have that opportunity. Your sister will come see you as soon as it’s possible don’t you worry about that x

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laura_dropstitchHeart Star in reply to HappyJo

I hear you, Jo - wish I didn't have to go through this next bit but so glad the next bit exists as an option! Thank you for your support and friendship, always x

So sad to hear this,

I wish I could share your load,

My thoughts are with you.

Henry xx

Oh Laura, I've just seen this. Me & my 93yo mum have been having our own health problems over the last month and I've been skimming over the HealthUnlocked emails. I suddenly realised that I must have missed a Haiku topic, so not only did I find the animals, but also this post. I want to be writing monthly haikus for your zine for at least the next 10 years, so you hurry up and get your heart sorted! xx

Hearts, eh? Who'd have 'em?/They're more trouble than they're worth./But how we need them.

Congratulations on your 10 years hearty anniversary. Sending you good thoughts and vibes. Looking forward to and eager to read the 20th anniversary post and congratulating you on your next milestone.

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