Three years ago, aged 55, I was diagnosed with severe heart failure and cardiomyopathy. My ejection fraction was in the low to mid 30s. This was a shocking and totally devastating diagnosis. It came about from a routine check up for Rheumatoid Arthritis where the nurse checking my ‘vitals’ suggested I should get an abnormal pulse checked out. I saw my GP who referred me for an echocardiogram, which resulted in my diagnosis. No clear cause has been found, despite all the usual tests. There is no family history, I’ve never smoked, I have been vegetarian and eaten healthily for most of my adult life. I was, physically active, walking, cycling and yoga. In the absence of all else the conclusion drawn by my cardiologist was that it was probably, but not certainly, caused by complications arising from rheumatoid arthritis or the drugs I was on to control it.
Did I have symptoms? In hindsight yes, I just never realised they where symptoms of a very serious condition. I was tired often, I had a minor but persistent and irritating cough, at night and first thing in the morning I felt a little wheezy, but put it down to not vacuuming the bedroom often enough. I was still very active, walked my dogs for miles largely around the Pembrokeshire coastal path, which is far from flat. I practiced yoga and cycled (albeit an E-bike). I had no idea how unwell I was. In fact I actually felt fit and well at the time, my arthritis was well controlled.
My experience does make me question how many other people are walking around with heart disfunction without knowing it? And what difference would this make to life expectancy statistics if everyone who had impaired heart function was identified? Just a random thought.
My diagnosis shook me to my core. The psychological impact was far greater than any physical symptoms I experienced. I became over sensitive to every little twinge, ache or pain. Things that I’d completely ignored, or never noticed before, had me in a whirl. I was overly anxious, depressed and felt totally alone. I was scared to go out walking, especially on my own, something I loved and had always done. I had very long waits for a cardiac MRI (12 month wait) and other tests to try and establish cause and inform treatment (and this was pre covid). This just added to my anxiety.
My biggest mistake was to google my diagnosis during my wait for tests, primarily to see if there was anything I could do to improve my situation. Subsequently, I thought I was going to die, I wasn’t going to see my son graduate university or fulfil any of the retirement plans my husband and I where already discussing. I worried about my daughter, who is autistic and was experiencing her own difficulties, what impact was my demise going to have on her?
I found it really hard to tell family and friends my diagnosis and I didn’t handle it very well in hindsight. I skipped over it very briefly, pretended I was fine with it when the opposite was true. I never actually told my elderly parents the full story. My inability to talk about it to anyone contributed to my sense of isolation.
What I got right was to eventually see a counsellor to help me come to terms with what was happening to me. I discovered and joined this forum. It was here I heard from other people who where living well with heart failure and had been for some years. This forum helped me understand that what I had was a heart that wasn’t pumping as efficiently as it ideally should, it did not mean my heart had or would ‘fail’ anytime soon. I discovered the term heart failure is an unnecessarily cruel one. This forum inspired me and helped to restore my mental health. I’m so grateful to those people who responded to my initial posts, you really helped me. I’ve tried to do the same for others since and I hope this one story might help some.
So, after a shaky start, long delays for diagnostic tests, changes to rheumatoid arthritis medication and tweaks to cardiac medication to get it right for me, the drugs alongside some basic lifestyle changes are working. My ejection fraction improved, first to mid 40s and after two year to 56, and this year’s echocardiogram put it at 54 (normal range is 55 to 70 as I understand it). I have been discharged from Cardiology services with an annual check ups. I’m physical active, walking, cycling and yoga. Earlier this year I completed a virtual walking challenge, the coastal path of Wales, all 870 miles of it, predominately along the hilly Pembrokeshire coastline. I did it in nine and a half months, averaging over 20 miles a week. In yoga I can do full squats (bum on heels and back up, unaided),something I haven’t been able to do for years, my flexibility and balance have improved immensely.
Walking wise, I can’t do what I used to, I do get out of breath quicker when walking uphill. I struggle with steep climbs in a way I never used to. I can no longer keep up with my husband, we were always pretty equal on the fitness front. I worry sometimes that this indicates my heart failure is progressing. However, my husband is exceptionally fit and healthy for 60, so isn’t a good benchmark for me. And my last two echocardiograms tell a different story. I have to pace myself, take regular breaks and sometimes limit what I do, but, I’m living a full and active life 3 years on from my diagnosis. My worst fears have not been realised, far from it.
Psychologically it’s been hard and that journey continues, but the first 18 months were definitely the worst. My challenge now is learning to live with uncertainty, maybe not plan so much and relinquish control where I have little control. I’ve always been a bit of a planner and liked to feel in control. On the positive side it has forced me to consider what is and isn’t important to me and make life decisions accordingly. Ive chosen to take early retirement and do now the things we’d (my husband and I) planned in retirement. I’m currently travelling around Europe in our camper van and intend to spend much of the winter here in the warm sunshine. My son has graduated university and is working in a good job. My daughter is now in her second year at university, studying a subject she is passionate about. Life goes on, it has changed, I’ve changed, but it’s still good. I have real hope that I’ll be here to claim my state pension in 9 years time, when I’ll be 67, and 12 years on from the diagnosis that changed my life.
I wish all of you newly diagnosed all the best 🙂
Written by
GracieOS
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Love your post and your positivity from being through so much.
Cut to the chase - why don’t we have regular heart checks as part of an NHS routine health check?
It would save lives and save the NHS millions in taking care of us when it’s found early and not too late. A simple stethoscope check could do it.
I’m glad you are well now and working out how to look after yourself to enjoy life. It’s true that the fittest ones are the most shocked by their diagnosis. I wasn’t super fit but I was jogging when I had my wake up call!
Pre Covid my GP was starting to include ECGs in a patients annual reviews. Of course this as soon as Covid measures were in place. Wonder if it will ever start up again.
It’s great to hear your inspirational story, which is similar to mine.
BHF were fantastic when I was diagnosed (DCM and AF in 2018), as were cardiomyopathy.org. They both helped me come to terms with the diagnosis and set my mind at ease.
Very well written. I only wish I could write. Similar to me too. 3 years ago also. Now I enjoy life more and don't worry at every little twinge. I have osteoarthritis and a hernia (again) and to be honest the pain(s) from those affect me more than my heart failure.
What an inspirational post and thank you so much for telling us your story. There was a lot in there that I identify with. Diagnosis just over 2 years ago and now quite stable on cocktail of drugs. EF not improved hugely improved ☹️- at last echo it was 43% but cardiologist hopeful that given time it will get back up to 50. Am I symptomatic - yes. Breathless when I overdo it, fatigued and slightly anaemic and some fluid retention. Pacing is a horror story in my life! You learn so much about yourself when challenged - I would never have put me down as an 'all or nothing' person, but it appears I am so I'm learning to set smaller targets, I still walk daily and do pilates and I've recently moved house - which is testing in the best of health. Your story touched me - and I am sure many others on this forum. Thank your for your wisdom and encouraging words.
What a wonderful post Gracie, thank you for sharing your story. I am sure your experiences will help a lot of others. As newly diagnosed I totally agree about Googling before waiting for tests and treatment! Focusing on the really important things in life you mentioned - so true. All best wishes for the future. Mike
Thank you for your post. I was diagnosed with cardiomyopathy April 2020 age 57 and have had my ups and down over last 18 months, not helped by little family support and having a 19 year old daughter ( now 21) and having lost my husband to cancer 2010.There is no family history and cardiologist believe it's covid related.
I also loved walking and have found the extra effort and time and feeling breathless on any incline frustrating, so thankyou for your post.
Overall I'm now 18 months on feeling more positive and enjoying life. Just want to add my care throughout by cardiology team in Edinburgh has been excellent despite the pandemic.
Thank you for sharing your story. I've found it 'heart warming' & really encouraging. Wishing you all the very best x
An interesting post, and one well worth the read.
In truth, I think most people are walking around with some potential medical issue that is waiting to rear its ugly head. It was an interesting experience for me when I was diagnosed with heart failure - in that I just said OK, what’s the process. I didn’t get anxious, worried or anything - and the only place I visited on the web was this forum.
However, it should be noted that only 10 years prior I had been declared free from Lympoma, which I had experienced and received Radiotherapy to help resolve - and during THAT medical issue I done all the panicking, anxiety etc. and then made the re-assessment of what mattered in life.
Thank you for voicing your experiences for the benefits of others to follow, and hope things get resolved for you soon.
Well done, life still goes on and you've proved it! I've put my post up before and needs a little updating but if you're interested having a look it's more proof you can keep going, also done the London Marathon this month amongst other runs! roytruett.co.uk is my story
As soon as I spotted your post,could not wait to read it!My experience is virtually identical to yours! I remember wondering how many others may have it and not been detected.
I am a nurse and read everything and every study - it almost destroyed me. My son was doing his A levels at the time and we kept everything quiet so he was not distracted, but knowing we had to get him tested as soon as he finished... ( just writing this brings it all back!) He is in his last year at Uni and he is fine. I have just taken early retirement at 55 and moved to country village...lot of hills!
Just like you, I thought, compared to partner I am more out of breath walking up hill...then walked with some friends and they were struggling far more than me , so that was reassuring!
Thank you for posting your wonderful message, so wish I could have communicated with you at the time...but crying was all I could do back then, but not now.
Great post, GracieOS! We are the same age and I got diagnosed 18 months ago with a heart valve condition that is going to worsen. (Apparently it was due to a childhood illness - rheumatic fever - so could/should have been picked up years ago...) Thus, I too can identify with the thoughts that you have expressed. Currently trying to get fitter so I am better equipped for the future - can't do a full squat yet though - just tried!! So will keep practising!
Great post and living proof that a positive mind set is the best medicine you could ever have. Googling anything heart related can be quite traumatic and is best avoided, just deal with your own doctors as they will know you best, everyone is different and all you can ever read about are worst case scenarios, when reality is there are infinite other outcomes.
You and many other here's are living proof live goes on and can be normal given the huge technical advances in modern heart medicine.
I've been listening recently to a guy called Dr Joe Dispenza, this video is a great intro to him.
All about how our thought process can affect your body, the mind/body connection is so important, most don't realise it.
Your point about the many others walking around with heart issues is also very salient, most don't know, heart screening should be mandatory for all, the cost of an ECG and an Echo is tiny compared to the disease management it could prevent if caught early enough, same for nutritional and lifestyle choices. However we are doomed to never learn from our mistakes.
Hi Gracie, thank you for sharing your amazing story. I have heart failure too, my medication isn’t working for me and my ejection fraction is still between 29-31% please can you share what medication worked for you? I know everyone is different medication wise but just interested. Many thanks Andrea
Hiya. I’m just on pretty standard stuff, bisoprolol 10mg, Eplerenone 25mg and candesartan 16mg. These where all tinkered with to get the dose right for me. I’m also on other drugs for rheumatoid arthritis.
Thank you. Yes I have given up alcohol and caffeine. I have very low blood pressure so it’s been tricky with medication as most lower blood pressure. I walk my dog everyday usually about 3k. I am on Candesartan only 4mg in the evening plus Carvedilol 12..5mg morning and 12.5mg evening all spaced out to help with low blood pressure.
Thank you for your story, I am pleased you are progressing well. I hope someone might take notice of your story. We could do with a lot more lobbying to get testing done so people have a chance to address heart issues.
Hi Gracie, thank you for posting, it's always good to read something positive. You seem to have taken it in your stride, which is essential in my experience. Whilst the diagnosis of Heart Failure is relatively new for me, I'm an old hand with Heart matters, but, it's still useful to read how others are doing. It may even inspire me to write a bit more on my own circumstances which had led to HF.
Thank you for sharing this Gracie, I was also diagnosed at 55 with heart failure but this had not been picked up earlier and my EF was 10 %. But a year later it was 40 %and I was discharged back to GP. that was in 2017. But being told my heart was working at 10% I thought my time was up! It would have really helped to know that the drugs would work and what that would mean ! A couple of years ago I found a patient group, pumping Marvellous, and they have helped educate me about new medication and advances so I feel more secure that if my health deteriorates there might be options too. I'm on the same drugs as you, just the candesartan doubled. And just up the road in Carmarthenshire! X
Hi Pommel. I agree more positive stories when first diagnosed would really help. I used to work in Carmarthen. Commuted everyday pre covid. But, I was largely working from home for the last 18 months before I retired.
I work from home now but had been commuting to Cardiff 3 days a week! I just go in now and again now, bearing in mind covid too. It's always long journeys when you're rural! I was lucky enough to have some counselling too that first year of diagnosis. This from Glangwili hospital.
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