Today marks seven years since I was unexpectedly diagnosed with heart failure. I didn't think I'd even live to see Christmas 2011, but heart failure wasn't the automatic death sentence I'd presumed it to be. My life is different and in many ways harder, but it is also GOOD (better?) and FULL (fuller?) and BUSY (busier?) and HAPPY (happier? yes, happier!) because of my experience. And life is showing no signs of stopping any time soon.
Every year this anniversary, which I remember all the more because the diagnosis led to my daughter's early arrival, gets easier and easier, but this is the first year I think I've felt all good about it. (I'm owning heart failure! Ha!) Just wanted to share my perspective in case there are any heart failure newbies out there fearing the worst - there's a very real chance that things could turn out better than you are able to imagine.
And because I can never say this too many times... Stay away from Google! Bring your questions here (or to your doctor) instead xx
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laura_dropstitch
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Love it. Happy anniversary of 'bad news that perhaps wasn't so bad in the end'. Good to hear you're doing well, especially from someone only 2 years into the journey.
Thanks for this post laura_dropstitch I have only had my HF since diagnosed in May this year. It has been a shock to me and my family and still coming to terms with it and the meds. Sometimes I feel positive and then I'm right down in the dumps and can't see what the future holds.I am 60 yrs old and hoping to get early retirement through ill health. Reading your post has really helped as I do think sometimes how long will I be here. It's great to hear you are doing well and very happy. I will try and strive to achieve this outcome once again thank-you xx
It's a really scary time and takes a lot of adjustment. I was quite seriously depressed for a while (I mean years) and it took a lot of hard work and a lot of support from various corners to fight my way out of that. I'm very proud of myself for getting to this stage. I know it seemed an impossible dream in those early days, but here I am - still ill, but stable and hopeful and happy. Make sure you are talking to somebody (anybody and everybody) and feel free to message me any time you like. Good luck! x
I don't have HF and don't really understand what it means. I thought "death sentence" like you. Do you think a WFPB diet would help HF sufferers? It has helped me with my blocked arteries. I suggest it to people on here that I think may benefit from it, e.g. angina sufferers. What do you think?
Thanks Jimmy I can't see how a WFPB diet would help with heart failure specifically, but then there are so many different root causes for it. Mine is caused by a large and mysterious scar on my heart, so that's not going anywhere, no matter how many lentils I eat! (I do actually eat A LOT of lentils, so feel I can bandy that terrible stereotype about, as I've been vegetarian for...28 years?) My arteries are clear, but that's not necessarily the case for all heart failure patients. A healthy lifestyle is certainly recommended (as well as a healthy weight) but diet wouldn't reverse the damage as it might for some other conditions. I don't think so anyway. Glad to hear it's been beneficial to you though!
Happy anniversary Laura, I was feeling a wee bit down this morning...out of breath, aches and pains etc and just generally feeling a bit sorry for myself but you have really cheered me up with your comments. You've heard the saying 'happy as Larry' well I don't know who Larry is but today I aim to as happy as Laura x
Thank you, Clare Weekend is set to be...interesting! I'm hosting an "animal arty rainbow party" (no, I have no idea either) for my daughter and her friends. Wish me luck!
Glad to have given you a bit of hope! Feel free to message me any time, I remember how scary the early days (weeks, months, years!) were. Lots of love x
Fantastic! What a great example of positivity you are! I think the old saying "when life throws you lemons, make lemonade" is best held on to here. Your daughter must bring you immense joy and your positive nature will pass on to her. My journey started out of the blue just over a year ago and I'm going for my annual check up soon; hoping I find good news like yours.
Hope all is well at your annual check-up. My first few years were quite rocky, but I have been stable for a good few years now and I think I had to go through all the rocky bits to get my treatment plan working as well as it does. I'm not always positive about my situation (and that's fine too!) but I'm happier than I ever thought I could be and much healthier than Dr Google would have had me believe. I wish I could have seen into the future when I was first diagnosed as I spent a long time feeling very unhappy and fearing the worst. So often I see that same terror in the posts of new heart failure patients and, while I don't want to underestimate the condition, which is awful in many ways, I think it's important to show that it's far from hopeless. The doom-laden viewpoint gets plenty of coverage elsewhere!
Dear Laura, it's very comforting and inspiring to read your message. I was diagnosed 2 years ago (but realise I'd had it for longer of course!) and find that though I'm generally positive, the clouds creep up on you every so often so it's so helpful to read your messages. I hope things continue well for you too! X
I don't think it's possible to avoid the clouds all the time, it is a difficult and scary condition, but I do feel more and more positive (and less scared) the more time passes. Hope it all works out well for you, glad my post helps
I was only diagnosed with heart failure in April and didn’t even want to tell my family the dreadful diagnosis. Now I have more energy than they do and cannot believe how ill I felt at the time.
I read a letter in Heart Matters magazine a few years ago, written by a woman whose mother had been diagnosed with some form of heart disease (can't remember what) years back and made big changes to her lifestyle as a result. She was now in her 80s and fitter and healthier than a lot of her "healthy" friends, and probably fitter than she would have been if she hadn't had heart problems in the first place. That letter was the beginning of my more positive thinking about illness. Hope you continue to feel well for a long time to come, Ann
I'm the same - cause remains a mystery and certainly not lifestyle. But I know it's my heart failure that motivates me to go to the gym, so maybe it will be better for my health in a roundabout way
Living with any long term heart condition can be a tough challenging journey but your positivity is a wonderful inspiration and you are helping so many people...Thank you!
You are so right about the unreliability of Dr Google's consulting room.
Great to hear you are doing well, I like many others thought that HF was a 'dearh sentence'. I remember readind your post when you where not in a good place so I am thrilled you are in a current state mentally wellbeing. Living with a heart condition is never easy, I think initially you struggled a lot more as you were diagnosed at the same time as your daughter's birth and a daunting thouht of not seeing her grow up and here you are 7 years on. Be so proud of yourself especially today at how far you have come. Such a loely postive post has put a smile on face.
Thank you, Fran! I still have my down periods where I struggle with it all, but less and less so. Definitely agree the diagnosis coinciding with my daughter's arrival and the news I couldn't have more children made it a particularly difficult experience, but it's great to prove my negative expectations wrong year by year. I spent my daughter's first birthday crying because I thought I'd be dead before she was old enough to remember me. Now her birthday is all about her, as it should be Hope you are well these days? Lots of love x
I expect you do have days when you meet an overwhelming darkness.
I think more so when you have children as that fear says what if I die before they grow up. For you though this increases tenfold because of your health. How amazing it is theat you watch her grow the joy and enthusiam keeps you smiling. I hope she has faboulous birthday and party adding more positive memories.
I'm not great, but plodding along. Keep myself busy doingrafts for various charities.
I am just past my third anniversary. As you say at first it is frightening when I came out of hospital I organised my funeral thinking I didn’t have long for this world. Three years on and my condition is improving good days and bad days but more good days now. As you say don’t believe all you read on google.
That's it exactly, isn't it? More good days, less bad days. It's never going to be easy, but it does get easier. Hope you continue to get more good days for many years to come x
Hi Laura.. happy anniversary hun.. and to many more too. And although none of us hearties want that diagnoses it does also so change our perspectives that I sometimes think that we are happier than the "normal" folk. As we grab life by the scruff of the neck to enjoy every moment. Happy anniversary again xxx
Thanks for making me laugh out loud when l read about your lion pic and saw it, or should say l roared with laughter at 4.52 in the morning. ls your star sign Leo? Take care, Sue x
Can you give me some hope please. Diagnosed with heart failure 4 months ago ef gone from 20 to 30 last eco couple of weeks ago. Not coping don't think I can go on. Thanks for reading.
What a lovely post. As a newbie to sudden and unexplained heart failure this year, it’s so important to connect with the good experiences and outcomes. Your honesty about the psychological battles is so important - my heart may be fairly knackered but it’s the emotional journey in my head that causes me the greatest heartache, and it can be difficult to imagine getting to a better, more comfortable state of mind. This roller coaster may be a rough and scary ride at times but you’ve helped me cope with it better today, thank you Laura.
Welcome to our lovely forum. Just read your post and wanted to reply that we wonky hearties know exactly the emotional roller coaster you are going through emotionally. But honestly there is a full and fun and wonderful life after HF. Yes we need to make changes and may not b able to do all of the things we could before.. but the secret is to adapt and change with your body. I was diagnosed with HF 23 years ago!! I may be at what they classify as severe HF but although I am sensible eat healthy and exercise... and for me no alcohol ...all important to keeping the old ticker going.... I also ensure I have a social life...hobbies.... and listen to my body and stop when I need to. I am genuinely having more fun than ever... and no hangovers!! It is very hard to deal with at first but do take heart ( excuse the pun ) that there are many if us living a good and happy life...there is a happy life to be had following this diagnosis....xx
I've read all the posts, you are ALL AMAZING AND INSPIRATIONAL. I will be passing your details on to patients I work with. Thank you for sharing your experiences and lives with others
Really sorry to hear that. There's so much information to process when you are diagnosed and often there are often no answers to be had until the doctors see how the heart responds to treatment etc over the coming months. Have you tried phoning the BHF Helpline? It's manned by qualified nursing staff, so they can help to answer most of your medical queries, as well as offer emotional support. Number is 0300 330 3311 and it's open office hours.
No point in telling you not to worry, but I hope my story lets you see that things are not always as awful as they first seem. My only advice at the moment is to seek information from real people and not by googling - that will only make you more worried, usually unnecessarily. Sending all best wishes to you and your husband. Lots of love x
Whatever you do DO NOT GOOGLE. there is lots of support out there, including this forum. Hopefully your husband will have an echo cardiogram and someone can discuss the results so that you know the next steps. There is also a good charity purely for patients with heart failure called 'pumping marvellous'. Look this up as it, like this forum, is very positive in it's approach. Hope everything goes well and you find enough support
Well done Laura look how far you have come and what you have achieved!!! You will live to be an old biddy and with your creative skills you can decorate your zimmer frame with colourful flowers. Take care and thanks for inspiring. l am feeling happy like you l've just been discharged from outpatients as my heart operations were so successful and my pacemaker has hardly been used last year due to my body taking over its role, now l only have to take warfarin forever and have a pacemaker check once a year. Onwards and upwards mate, keep shining bright. Sue x
Well said Laura. I was diagnosed in October and thought I would just about make it to Christmas. BUT meds are working well and I am OK. As you say stay away from Google! Keep smiling x
Hi Laura. Came across your post and can relate to what your saying, I'm 14 months on after HF diagnosis and now changing my lifestyle with help from doctors, diet, exercise and positive thinking. It's great to hear you are now in your 7th year it gives all of us living with the condition the inspiration to carry on and enjoy life to the full. Thank you x
I'm really glad you found this post and its replies, Ken. Our experiences of living with heart failure are so different from Google's portrayal. The early days can be tough - a lot to get your head around and it takes a while to get the best treatment in place and to get used to it - but this forum shows you that there's a lot to be hopeful about. Keep in touch and be sure to post any questions or concerns you have on the forum. So many lovely people with heart failure around here who will be delighted to share their experiences and advice. Good luck! X
I have heart failure scared the living daylights out of me. I have a bundle block. Went the doctors she reassured me. She explained that is not a death sentence. So I'm going to enjoy life the best way I can.
Yes, still doing well - now 8.5 years on from diagnosis! Hope you are doing OK and getting all the support you need. Can't be easy to deal with a diagnosis like that with everything else that's going on now.
Thank you for replying 😊no just diagnosed then a virus that means you are even more at risk I am normally positive but is hard at moment please keep in touch X
Yes, that is tough - talk about having the rug pulled out from under you! Though better to have the diagnosis beforehand and know you need to be taking extra care, I suppose. Small mercies?! Take care x
I am so pleased you have done so well. May you continue for ages more. I think you have the right attitude. I was diagnosed with heart failure 18 months ago (a greater age that you) and unfortunately have mobility problems, breast cancer and a hiatus hernia which has moved into my stomach. Having said that I will not give up looking for ways to make my health easier. Miracles can happen. I wish you and all your family the very very best. Lots of luck and especially good health.
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