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 [Nowadays I know Dr Google is an unqualified quack who knows nothing and likes to present worst case scenarios and outdated research.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.
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laura_dropstitch
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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.
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
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.
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
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.
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
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 😊
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
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.
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.
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!
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
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.
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
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.
I wish you well with your determination to overcome this problem.I was actually diagnosed with heart failure and then after a sort of numb acceptance of this was told that my heart had returned to normal.
Trying to evaluate all that has happened over the year but it isn’t easy.
Hi. I ended up receiving my heart transplant just a couple of days after writing this post. It’s been a much tougher process than I was expecting, to be honest, and I’m still far from recovered, but my new heart looks to be functioning well so I’m still hopeful for good long-term outcomes. It’s actually my kidneys that are the main issue (possibly as a result of transplant meds, possibly a separate issue) so I’m in hospital at the moment and will likely be starting dialysis and joining the kidney transplant list in the next couple of months. Hopeful that if/when they sort my kidneys I’ll begin to feel the benefits of going through heart transplant. It’s a long road, for sure - definitely not where I thought I’d be after nearly 10 months with my new heart!
I am so sorry you are still facing such challenges.
Hopefully you'll be well again soon.
I think you are amazing what you are going through.When I read posts on here of people moaning about little niggles or the weather even,and you are going through all this.I have total respect for you.Wishing you all the luck and love in the world.x
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