Hello. My partner was diagnosed with heart failure just over a year ago and is doing well now that he is taking medication. Fortunately, he is the type of person who takes one day at a time, but I am finding this more difficult. I realise that I should be focusing on the here and now but I find myself thinking way into the future and imagining the worse. I was wondering if any one else has felt the same and if you have any advice or tips on what helped you, I would be very grateful to hear from you? Thanks.
Worried. : Hello. My partner was... - British Heart Fou...
Worried.
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Jaylark
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Hi I have heart failure, it’s an unfortunate way to describe what is up with the heart, it doesn’t mean the heart is failing but that it isn’t working as efficiently as it should. I was diagnosed in 2019 I live a normal life thanks to the medication and the care from the doctors that look after me .
Thank you for your reply and explaining that it doesn't meaning that the heart is failing. I am so pleased to hear that you are living a normal life with the proper care. Your reply is reassuring.
I’m so pleased that Hanibil has reassured you. It might be that you are now regarded as a “carer” and this means that your local authority (in my case this is a county council but this varies around the country) could be supplying you with guidance and support.
Can I suggest you go to your local authority website and have a dig around?
Also, your doctors group of surgeries probably employs one or more “social prescribers”. Details should be on your doc’s practice leaflet online. Again in my case we access the social prescribers through the receptionist, but each doc’s practice will have different rules.
Hello. I will take your advice and look into those things you suggest. Thank you so much. I'm new to this site and this is my first posting and all ready the two replies that I've received have already made me feel less anxious. It makes me realise that I'm not alone in this.
Hi
I find dealing with the thoughts is the hardest part. I try and change my thought pattern when I start to think and start to worry.
Hopefully in time you will relax more, like I am told live life to the full and enjoy it!
Hope all works out for you
Hello. Thank you for your reply. Yes, I'm the same when I start thinking to far ahead into the future, but hopefully, like you say, I will start to relax and take each day as it comes. Also need to stay away from looking at heart conditions online as some of the information is enough to scare anyone, so it's so nice to come on this site and hear positive stories. 😊 Take care.
Yes. I'm the fittest healthiest person and the last person to develop heart failure. But I did. I went by ambulance to hospital. Probable myocarditis. I've been taking the tablets and they make a massive difference. I'm recovering from an ejection fraction of to 25% to 49% and increasing further. Do not give up hope. I might need another year to fully recover but I promised myself, whatever it takes. I'm now doing rehab, cycle and do fitness in the hospital 3 times per week. The progress is incredible since at one point I was in intensive care. The body can heal. The heart can recover. It takes time. Take the tablets. Give it time. Don't lose hope. I've been there. I know what it's like but he can recover. It is not repeat not a death sentence.
Thank you so much for your positive words and encouragement. Your words have really helped me put things into perspective. I am pleased to hear how well you are doing and the positive steps you are taking in your recovery. Take care.
I've been there myself. I'll be honest with you. I thought when I was in intensive care, that I was dying. I began to ring my friends just to update them of what was happening. I never had swollen legs which was probably a sign of my fitness level, but when the nurse told me 25% EF I thought the worst.The doctors and care team have been amazing. Part of my own therapy was to return to the hospital and personally thank the nurses who cared for me. I'd promised one nurse I'd return to thank her and I did 
. I had a tear in my eye that day. While ill, at hospital I'd had nurses running into my room panicking about a strange beat I'd had. That was unnerving. "He's awake...conscious " they said to the monitoring station. I hated falling asleep worried if I would wake up.
Check with your doctor first but lately, magnesium is working well for me, on top of my prescription medication.
I've come a long way. Still further to go. But my life is returning to normal. Dare I say, I'm even doing sport again. I'm overcome with emotion when I think of the care team and doctors and what they've done for me.
I'm so happy to know that you had a very good care team it must make all the difference in your recovery. The nurses must have been thrilled when you came in personally to thank them as they often get very little thanks for the work they do. Good that you are getting involved in sport again as that's always a good sign of your health improving. All the best and take care.
Hello there. I suffer with HF and now I seem to have just about reached the extent of treatments,Mahe a biventricular pacemaker fitted 6 weeks ago not made much effect yet. But I have been seriously thinking of where to from here. If we are to move such a heap of selling stuff required and energy to shift. Husband not up to it. No fun at all. Obtaining advice seems impossible. I am in NZ. Looks like your councils offer assistance. Hope is the thing, and having info on all options.
Thank you very much for taking the time to reply to me. I agree that we all need hope as well as support. It's such a shame that you are not getting the help you need in your country. We have the NHS to fall back on but it's not perfect by any means, but I am grateful that we have this health service. I'm finding that you can get more advice more easily from charitable organisations like this one and the Cardiomyopathy organisation if it is available in your country. Best wishes and take care.
I had a heart attack in May 23. The most difficult thing I’ve found to get to terms with is being classed as having heart failure.
I have two stents, a bypass and a replacement aortic valve. Since my open heart surgery in June 23 I’ve started running and I do a 5k most weekends and a gym class weekly. I’m more active than I was before my HA.
I’m on medication for life, I have an annual Long Term Condition review with my GP (about the only time I can get to see a doctor there), and my local hospital cardiac unit have said they only want to see me biannually.
Life is actually good, I’ve got a second chance to appreciate things and people around me. The only restrictions on my lifestyle are on alcohol consumption (I’m not fussed by that) and the horrid cost of travel insurance. I do have plans for the future but mainly live for the day …
Hello survivor. Thank you for taking the time to reply to my post and for sharing your story. Sounds like you have been through a tough time but you are on the road to recovery and getting back to normal life. It's interesting that you say that you are doing more activity now then before your heart attack. That's reassuring. Thanks again and take care.
Hi Jaylark
My husband also has heart failure and I too struggle with worrying about him. It’s now been over 2 years post his diagnosis and I worry a lot less than I did at the start but it’s still in the back of my mind. My husband is similar to yours in his attitude towards it all and it was difficult for both of us at the beginning as we were in completely a different headspace. Therapy helped me massively, I went to see a therapist for about 12 weeks or so. I paid privately as CBT was the only thing available to me on the NHS. I had already tried CBT for anxiety and it is very effective at changing thought patterns but I needed to process the trauma first before I could even think about changing my thoughts around it.
The other thing that has helped has been the passing of time! The longer I see him okay living a normal life, the better I feel about the diagnosis and the less I worry. I know it won’t last forever and there will be a day when we’ve got to face reality but for now I’m just enjoying our life together while we can. Life is very unpredictable and in theory we’re all living not knowing what’s around the corner. Having an actual diagnosis of something serious does make it all very real/give a sense of something hanging over you but you can also use it as a reminder that life is short, precious and we only have now.
I would recommend you try therapy if you can and be patient with yourself. A year isn’t that long and you’ve been through something traumatic. I wish you the best and hope you start to feel better about it soon! Xx
Hello Irish Wife. Thank you for your reply and very good advice. I can identify with everything you are saying around having something hanging over you after the diagnosis. I did try a couple of sessions of counselling but it wasn't the right sort of counselling for me, so I decided to join this group as I feel it's more helpful for me to hear some positive stories as there doesn't seem to be anything positive out there on the Internet. I hadn't thought about going through a traumatic event, but you are right so no wonder I am worried. Thanks again for your advice. It is much appreciated. 🤗
Hi Jaylark
My husband Dave and I sound so similar to you and your partner. Dave had a heart attack two years ago and after the initial shock and lifestyle changes (diet, stopping smoking etc) he now lives his day to day life with hardly a thought for his diagnosis.
I, on the other hand, am a natural born worrier and it still crosses my mind most days. I totally agree with irishwife93 that the passing of time helps. In the early weeks I had an absolute meltdown in the supermarket because I was so terrified that if I bought one item of food that wasn't heart healthy he would have another heart attack and it would be all my fault. Kind comments on here brought me down from that heightened level of fear - partly with their common sense (which had completely abandoned me) and partly because it's not sustainable to live with that level of fear.
Dave is currently playing golf in Spain and although I'm still nervous that something could happen again, I've tried hard to accept that I'm not responsible for him. Although he doesn't talk about it all the time, I know he is sensible and will avoid any potentially dangerous food, too much time in direct sun etc. And I just have to trust him. He wants to be around for a long time as much as I want him to be.
It will get easier. As others have said, one year is not long at all. There's a lot of kindness, strength and support in this group - use it. I know I found it an enormous help. Nobody here is judging you.
Take care.
Hello Nervous Wife. Yes, I think we are very similar. I have to keep reminding myself that I am not totally responsible for making sure that my partner is okay and often I don't give him enough credit for keeping himself well, which I know that he trys to do. We can only do our best, at the end of the day. I know what you mean about buying heart healthy food. I worry that things I give him to eat will bring on a worsening of his heart condition, but he is more relaxed about it and tells me not to worry. I, also, get anxious if he hasn't replied back to my texts within half an hour and my mind plays tricks imagining the worst, but thankfully he is always okay and he might have just not heard the text or has been sleeping. You can drive yourself crazy with worry. I can imagine how worried you are about Dave being in Spain, but it sounds like he is sensible and I'll bet he is having a great time in the sun. I'm overwhelmed by the support that I've received on this online community. Thank you so much and take care. 🌻
As others say, Heart failure is a very emotive term. The heart does not work at 100% efficiency and so almost anyone can be said to have heart failure.
Someone reasonably fit and healthy and relatively young but not an athlete might reasonably expect Heart efficiency of 66% or so. Those who are older and unfit and even without a heart condition will be substantially below that.
The key figure is Ejection Fraction (EF) It is likely that in the battery of tests your husband has had, that this figure would have been produced. The lower the figure the lower the hearts efficiency. There are plenty of people with an EF of 20% or so on this board who manage to function perfectly well although obviously that figure is not ideal.
A figure produced a year ago soon after any heart problem was diagnosed is likely to be much better after medication and perhaps lifestyle changes such as more exercise, losing weight and caution over diet. I don't know your husbands original condition and whether or not the EF was taken 6/10 weeks after the original problem or whether a year after the event there has been a new test.
Are you able to say what the EF was as that might give an indication as to the sorts of things he could or should be doing to live a fulfilled life and help to reduce your own concerns.
Your interpretation of EF is very misguided and not everyone can be said to be on heart fail ire. Just because the normal EF range is between 55-70% does NOT mean the heart doesn’t work at maximum efficiency.
This is why - firstly: The heart is physiologically designed to keep blood in the ventricles to ensure maximum efficiency of its purpose. The heart is designed to pump efficiently under normal conditions and conserve energy, so pumping 100% wouldn’t necessarily improve overall circulation—it would just expend more energy and stress the heart unnecessarily.
Second: There is also a relationship between the pressure in the ventricles and the arteries. I’m not a mechanic nor an engineer so I can’t explain it fully but I know that this pressure works best between 55-70%.
And lastly: the heart needs to hold a preload capacity for maximum pump. If it pumped it completely, the ventricle has no buffering for that contraction. This buffering strength also relies on strength of the ventricles to pump, which os why someone who regularly exercises and has a strong heart muscle easily meets the higher end of the normal range of 66% and why older people, who differ naturally with declining muscle strength of not just the heart but other muscles, have a lower EF.
I said nothing of the sort. Please reread it.
Thank you so much for your reply and explaining the EF to me. Best wishes and take care.
I was diagnosed with HF in 2002 and meds sorted it out and I was active until 2015 when I developed atrial fibrilation. New meds and an ICD saw me back to taking cycling holidays until 2023 when, I suspect, Covid restarted AFib and also caused another arrythmia, LBBB. As I would have been due a device change in 2025, they took out the old ICD and put in an CRT-D a couple of months ago. I am now feeling better again and becoming much more active again.
The main thing is to stay active. Nothing difficult, a 20 mins walk per day, just enough to make you slightly out of breath. Excercising your heart is vital but just nurse it along. Don't strive for your personal best. You've all the time in the world to make very slow progress, 5 mins becomes 10 mins becomes 15 mins etc. It doesn't matter how long the improvement takes.
Thank you so much for your reply and sharing your story. I will pass on your advice to my partner, about taking things at your own pace and not striving for too much to soon. He has a tenancy to overdo things, so your advice will be very helpful to him. Best wishes and take care.
I was Diagnosed with Severe Heart Failure and yes the term itself is devastating. But in my experience a very poor choice of term. I was 20% in September 2023 but by January 2024. It had increased to 32% within 4 months I have not had a recent check. They are offering me Difib device. But also talked about my age as having one fitted now would me I have several batteries changes throughout the rest of my life. These batteries are changed every 6 to 10 years. So that shows they expect me to live a long time.
I too struggled at the beginning of the Diagnoses but your in the right place I have found so much encouragement and support here
Hello Shabana. Thank you so much for your reply and sharing your story and I am so pleased to hear that your EF has increased, so presumably it will have increased even more by now. Good luck with having the defib device fitted and all best wishes.
Presumably it's increasing over time. I just wish they used a different term to describe the illness
Hi I was diagnosed 21 yrs ago with an Ejection Fraction of 43% and continued working and living my life.
The main problem for me is Dilated Cardiomyopathy and Atrial tachycardia which became persistent. I ended up with a pace and ablate and a CRT-P fitted.
6 yrs ago my EF went to 10%. I began a cocktail of meds and my device was changed to a CRT-D. My EF went to 23%.
I’m still doing stuff and trying to live the life I’ve been given, I don’t have any other choice.
All the best.
Hello I was diagnosed with HF in June 2018 with a EF(ejection fraction) of 22.Now six and a bit more years on I'm on optimum meds and not seen a medical professional for over 4 years. I don't know what my current EF is but get around fine without any symptoms. It's also important to accept EF is a good marker but not the only measument used. Most cardiologists will tell you it's how you feel within yourself that's important. For reference I'm a 67 yo male no longer under heart failure team and go abroad as often as my finances( and wife haha) allow. Best wishes to you both from Newcastle.
Hello. Thank you very much for your reply and I am pleased to hear that you are doing so well and that you haven't needed help from the cardiology team for some time now. Keep up taking those holidays as the weather in Newcastle can be dreadful. Take care.
My cardiologist said they really need to call it something other than heart failure as people always think it means they are going to die. When in fact it just means your heart isn't working to its full capacity..
I was diagnosed with heart failure in 2020 and also found out I was born with a small hole in the side of my heart. I had to laugh as I have had 3 major ops and 2 minor ones all with a dicky heart.
2021 had MRI on my heart which showed the connections between the chambers of my heart are intact and have strong heart function. Been on Ramipril for over 10 for blood pressure . Was prescribed Flecainide and Apixaban in 2021 as I have Paroxysmal atrial fibrillation. Just means my heart goes crackers at times and get heart flutters neither I get very often the Flecainide helps keeps my heart in rhythm and the Apixaban is a blood thinner to lesson the chance of me having a stroke.
I am 66. And live my life to the full.
It's only natural to worry about about your partner. I was born disabled but it was my fit healthy husband who got cancer and died aged 47 when I was 45.
Live your life to the full and don't worry about the what ifs or you will miss the now. Do all the things you want to do as a couple as being loved and loved in return is precious. 😊
Thank you so much for sharing your story with me. You sound like a very positive person with a great sense of humour, which I guess helps a lot. I will definitely follow your advice and will try and not let my partners diagnosis rule my life and will get on with doing all the nice things in life. I agree that they should change the name, heart failure. Hopefully it will be one of these terms that changes over time to a much more accurate term. Take care.
Glad I could help . 🌹
Hi Jaylark, Totally empathise with you, my husband after major OHS surgery in April last year and 82 at the time has been through the mill with plenty of ups and downs. Here in Spain heart failure is always referred to as 'cardiac insufficiency' a less stressful description but like you the diagnosis feels life changing. When I look for the positives I think of all the amazing medical advances available now, and the difference they are making. Yes, side effects can be a nuisance and it can take time to adjust. I guess my role is staying upbeat in the downtimes, not always easy and on really trying days I silently award myself an Oscar..
My husband is 84 tomorrow and is still loving life. Photo taken last year 3 months post surgery
First lunch with friends
Hello Tony Ben. What a handsome, young looking husband you have. It's lovely to hear this positive story from you and to learn that having a heart condition doesn't have to mean the end of having fun and living your life to the full. I will try and be more like you in being more upbeat in trying times and just live for the moment. We missed out on having a holiday this year but will definitely be doing something next year. Somewhere sunny, I think, like in your photo. Wishing you and your husband all best wishes. 🌸
hi I was diagnosed almost 2 years ago . Am doing ok with heart failure . All you need to do is slowly take day by day with slight excerse and look on the bright side . It’s something people with heartfailure need to take to others as each person has different heart failure symptoms and ejection rate . My heart failure was with 13000 bnp , it hit me very hard as I now have copd ontop of heart failure
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