It is my 60th birthday on the 5th April. It’s a birthday I thought I might never see. I was diagnosed with heart failure five years ago with an Ejection Fraction (EF) in the low to mid 30s. I was told it was severe. The diagnose was a complete shock. I made the Google mistake that I’m sure many of you made too. The next two years were a real struggle, my mental health took a battering with that diagnosis. Slowly, over those two years, my EF improved, to mid 40s then low 50s and I learned to live with heart failure. My last couple of echocardiograms had my EF at 54 and 55, stable at the bottom of the normal range.
I’ve made big decisions as a result of my diagnosis, the biggest taking the opportunity to opt for early retirement 18 months ago. It’s a decision that has proven to be one of the best decisions I’ve ever made, despite the financial implications. My life is good, I still do all the things I like doing, I am a hiker and still hike up mountains, across fields, along costal paths etc. I practice yoga and have grown to love it. During retirement I’ve been travelling around Europe (a number of different trips) with my husband in our very old campervan. We signed up to a website as house/pet-sitters and have house/pet sat in France, Spain, Italy and Switzerland.
I have to pace myself, I get tired more easily than my husband. I can’t hike up mountains at his pace, I’m much slower. I need rest days. I have to listen to my body and not push too hard. I still get anxious at times, I had an A&E visit about 9 months ago after calling 111 and being advised to go, it wasn’t necessary on that occasion. I aim to carry on living well for many years yet. I do everything within my power to manage my condition but have accepted not all of it is within my control. Fate, luck, physiology, medical advancement, access to medical support is all going to play its part.
I’m writing this because I want it to give others, recently diagnosed with heart failure, hope. I know when I was first diagnosed I really appreciated hearing from people who’d been living with heart failure for sometime. I, and others, are proof that a heart failure diagnosis is not the end of your world.
What did I do to get here? I followed medical advice, took the drugs (they took a while and a lot of tweaking to get them right for me) engaged in regular moderate exercise, cut down on caffeine, alcohol and generally tried to follow a good diet. (I’ve never smoked). I also saw someone to help with the mental health side of things (talking therapy) that was money well spent as it helped me come to terms with my diagnosis, put it in perspective and helped me focus on what really matters (dumping lots of things that didn’t).
I’m in Greece to celebrate my birthday, I probably won’t be online for a few days or so but I’m happy to respond to people in time if it’s helpful.
Good luck to all you newly diagnosed, I sincerely wish you all the best.
Gracie.
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GracieOS
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Thank you so much for your encouraging and positive post. It is good to hear from those who are further along in their heart failure journey. It sounds as if you have a really good life. I am almost 1 year from my diagnosis (with similar EF figures as yours have been) and I have days when I really struggle, both physically and mentally so it is a comfort to know that there is light at the end of the tunnel. Your post came on a day where I feel down so I feel uplifted to read it. I wish you well for the future.
Wow and many happy returns for your birthday at the end of the tax year (sorry it's in the blood).
Very inspirational as I come up to my 2nd anniversary, even though I am doing well (in my book) I do miss walking in the wilds. I may yet be able to start to do some proper walking again.
You are spot on about dumping those things that don't matter and concentrating on those that do.
Bless you Gracie for sharing that inspiring post and helping others. Wishing you a wonderful birthday and hope you get the love back that you have given to others.
What a lovely, honest and empowering post, thank you GracieOS !
I too have been diagnosed with heart failure (along with dilated cardiomyopathy), I’m still going through the tweaking of my meds to try and find my groove.
Thank you for giving me hope of living a “normal” life again.
Long may your adventuring with your husband continue - I particularly love the house sitting abroad, sounds divine!! 😍😁
Wow what a wonderful post. And a very very happy birthday! I too have heart failure after aortic valve surgery that went very badly wrong - but four years later I am still here! Still tweaking the drugs and doing ok. I live by the coast and never tire of looking at the changing landscape of the sea - and enjoying the huge skies and endless horizons. I'm much slower than I was, tire easily and need rest days - but with a good diet and exercise (whats not to like about coastal walks) I'm ok. And BBC iplayer back catalogue is wonderful for those rest days, and catching up on the reading. I still work a bit - thankfully in an area where age and experience are valued and respected, and like you hoping for many more happy years to come. Good to hear from you Gracie and send us a message from whichever part of Europe you travel to next.
Thank you so much Gracie, for sharing your wonderful, inspirational, positive and so encouraging story with us all. Wishing you a very Happy Birthday for tomorrow with many, many more years of health and happiness to follow. Carol x
Thanks for sharing this Gracie, and a very happy birthday to you! You have been an inspiration since I started my own journey 4 years ago and were one of my ‘first responders’ in the forums. Enjoy Greece and here’s to getting many more miles on the clock!
Thank you for sharing this. My partner was recently diagnosed with HF, and we're still coming to terms with it. I find it so reassuring to hear actual, real life stories from people living with it and what it actually means as a diagnosis.
the term Heart Failure is a horrible one. One that can’t help but make you anxious. Try to think of it as the heart simply not pumping as efficiently as it could, something the drugs, exercise etc will help put right, and forget the word ‘failure’. I do wish the medical profession would drop the label heart failure and call it something else.
Dear You
Fantastic uplifting post that will inspire and help many on here a they come to terms with their own diagnosis .
Thank you so much for taking the effort to write this as it seems you are very active with your time.
A Happy Birthday to you { and many many more }
Enjoy that sunshine as it helps you form lasting memories.
happy birthday for tomorrow we might be twins from different things I am 60 tomorrow as well👍🏻 I stopped working in December 2016 due to stress, I was a manager and would be at work and my chest would start pumping and I would feel horrible, had an ECG and was told it was stress related, I got no support from the company I had been with since leaving school if anything they were more the opposite of supporting me, in November 2020 I ended up in A&E with suspected heart attack, but they said it was chest infection. Four weeks later I spoke to my GP again as we were in the middle of lockdown and they said they would refer me to cardiology just in case, cardiology phoned me a week later, they thought it was gastric related, I said I had had IBS for many years and this was different so they sent me for a CT scan with contrast, they could not do the first CT scan as my heart was beating to fast even tho I had taken the meds they sent me so I was booked in for another scan 4 weeks later, I had the second scan after being sent a lot more pills to take for this one, three weeks later I got a phone call from cardiologist asking if I was on my own and I should not gout out in the cold as my LAD artery was over 70% blocked and I needed to go into hospital at Basildon but the problem was basildon hospital at the time was going through a bad time of it with covid and the cardiologist said there was a good chance I would catch covid if I went in right away, so it was agreed that it would be postponed for 12 weeks and I was sent lots of medication the next day by the hospital. So in March 2021 I went to Basildon had the angiogram and was told the artery was not as blocked as first though and they could not fit stent and I was to carry on with the meds I had been on and carry angina spray with me at all times and if I feel any worse present myself to A&E. I went into A&E last September with a kidney stone blocking my tube from kidney to bladder and after seeing how the staff were over run, and how the general public treat them I hope I never need to go in again. So tomorrow is a big day we did not think we would see HAPPY BIRTHDAY to you Gracie I hope you have a wonderful day, but not to much cake tho you know it’s not good for you, oh and tell your friends no bumps as that would not be fun, 60 bumps just imagine it 😂
Thank you Gracie. Very very similar to me. Diagnosed December. Same ejection factor same story. I’m also doing well. Your post has given me so much confidence. Much appreciated xx have a wonderful birthday. X
Thank you for sharing and trust you have a memorable birthday. It is genuinely uplifting to hear that there is life after a major health event involving the heart.
Happy birthday Gracie & thank you so much for taking the time, especially while on holiday to give such an interesting & helpful post to those like me with HF (just starting my 3rd year). When you first hear the dreaded words heart failure you do fear the worst & think the end is nigh but it just means the heart is failing to pump as efficiently as it used to & posts like yours give a lot of hope to others. Like you I continue to go on my holidays, mostly cruises, & hope to do so for a long time. Enjoy your holiday.
Great to hear you are keeping well, have a fab holiday, char
Happy birthday. Wonderful post. Your right in everything you say. The worst bit is the mental side. Learning to live with it. Strange thing for me is I have lived with my condition all my life. But finding out really has knocked me. Still does, even though my cardiologist is happy and does not want to see me for a year. You sound an inspiration.
yeah. I was told I’d probably been living with heart failure for a couple of years before diagnosis. But I only started worrying about everything once I was given that diagnosis.
Happy Birthday and well done. Doctors should read that kjnd of story to everyone when they diagnose heart failure. It's a nightmare term. I'll reach my 3/4 century next week; something I never thought I 'd see as my mum died at 67 and dad at 71. One heart attack but plodding on doing almost everything I'm told.
happy birthday for the 5th, I’m going to be 59 on that day and glad to have reached it so far. We have had two family members pass away the day after their birthdays so while I’m looking forward to clocking up another year, I’ll be glad when 7th of April arrives!!
Take care and many more happy healthy years to you. 🦊xx
Happy Birthday (one day early), Gracie! I am so happy that you are doing well! It sounds like you have managed to turn your life into an adventure of sorts. The pet sitting in all of those countries sounds interesting and exciting all at once!
I am sure that your comments/experiences will help and inspire many others. Keep living your best life!
Hiya lovely to hear your positive story, I was diagnosed with HF about a year ago and really struggling, I think I heard the FAILURE and it freaked me out. But you're right it is good to hear a positive spin on things.
I’m in my 2nd year since being diagnosed with heart failure and at times, if I’m being really honest, I’m still struggling to live with it.
You’re right, there’s a feeling of such weight and uncertainty that sits behind that diagnosis and certainly being alone when I received that information was very overwhelming for me.
Unfortunately, I seem to be going backwards a bit at the moment but Gracie’s post and many of these comments has really lifted my spirits and I’m feeling more positive 😁
Hiya I have periods of going backwards and then I get positive days it's such a rollercoaster I had a awful time around Feb march but not so bad at the moment
That is part of the course I think. The first two years were the worst for me. But even now I have good days were I honestly feel really great and I have not so good days were I struggle. The difference, I think, is that I’m learning to accept that some days are bad days but in my experience good days will follow if I listen and take it easy when I need to. Learning to listen and rest when I need too is still a work in progress 🤣
Happy birthday Gracie. You are an inspiration and have been since I first joined almost 3 years ago with a diagnosis of heart failure. Yours was one of the first posts I read and found reassurance that aged 61 my life wasnt over. I too have improved with the drugs and a better lifesyle and have gone from severe to borderline mild. Wishing you all the best on your travels.
Happy Birthday Great you are posting so that people know their is a life still be enjoyed to the full even if at a slightly gentler pace Keep those wheels rolling Enjoy
It is amazing to me how much anything related to my heart condition (afib) works a number on my mind. Any slight episode of afib brings much anxiety, which I know is not smart. Congrats on doing so well with your health!
🎊 Many Happy Returns on your special day! Hope you have enjoyed celebrating in Greece 😃 Thank you so much for your totally inspiring post, you have given me much hope and made me smile... xx😍
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