I am 38 and was diagnosed with heart failure last year, I have young kids and although I feel generally well, I am really struggling with it and find it really hard not to dwell on it. They have told me it is severe as function is at 30% even though I feel well and they are now considering ablation as I also have significant bigeminy and as my function hasn't improved at my last appointment, they are unsure whther it is the bigeminy causing the problem or the heart failure itself.
Anyway, I just wanted to know if anyone had any tips on feeling happy and any positive stories. Thank you
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mezy
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Hi Mezy, at 56 I feel robbed. I can't imagine how it feels at your age.I too can't stop dwelling on my situation, I am seeking and waiting on counselling and would recomnend you get you name down somewhere asap as the waits are horrendous. I'm also seeking out peer support groups and will be zooming my first one in a few hours.
Beyond that it is often said to count our blessing and attempt to focus on anything positive we can find in our daily lives. Watch more comedy and less news, make the most of a sunny day etc.
I'm still working on all of the above but for a pessimist I'm doing okay, I think?
Hello with regard to bigeminy when I was introduced to Entresto, Bi and Trigeminy almost disappeared !! I still get them but they are very lite i.e. I can't feel them the same as I used to and I now have to feel for them !!! Heart Failure is I am afraid something you/we/others just have to live with. I don't think there is anything on the horizon to cure Heart Failure, but Meds are getting better all the time and you are young enough to benefit from these new meds and interventions.
So try to relax and look forward to the future you do have a future, don't let fretting over it cause you heartache.
I am almost 75 and I see a future for myself so stick in there.
Look into CBT Cognitive Brain Therapy , so you can train your brain to make a habit of when you get anxious or the negative thoughts start , you automatically switch to thinking or doing something else . It works if you allow it to. Plus take 10 deep breaths , count slowly to 10 . Empty your brain with the breaths , say to yourself ‘I WILL NOT THINK ABOUT THIS NOW’ ‘I have control ‘ you will automatically relax your anxious stomach feeling . As per previous reply . No one’s body is perfect . Make a time slot every day , for 20 minute lay down full mind body relaxation meditation of your choice . Empty your brain . Get your kids to respect this and work around it . Put a sign on the door . Drink de caff coffee . Calming teas . Try to ‘ float ‘ let heart muscle relax . Become the new you . Don’t ‘do stress’ refuse reject it . Tell people . Don’t bring stress to you. Hearts ♥️ LOVE 💕 a low stress existence . Promise you will feel 99.9% better . Use this to go to sleep also .
Just wanted to say thanks for recommending CBT. It actually means Cognitive Behavioural Therapy. I would suggest to the OP to refer themselves to their local NHS IAPT team for CBT and ask to see a Long Term Conditions therapist. As it's the NHS there is a waiting list so probably best to refer asap.
Hey. I'm 35 with heart failure, well severe dilated cardiomyopathy. I have an EF of 10-15% and no change in a year. I also have an ICD. I see the transplant team for them to monitor my heart. I too have two young children. I have good and really bad days. I'm constantly worrying about stuff, I've never struggled with mental health issues until my diagnosis last April. I do however have an amazing community heart nurse, who is great to talk to about everything and anything. I find talking to someone who isn't family or friend helps me. It's normal to worry and fret but you have a lot to live for. Take it easy xx
I feel for you. Really, I do. This cardio world was all new to me when I first came to the forum after a heart attack, stent and ( 18 months later) a triple bypass. But I am 65 with family history, so you kind of expect it to bite you on the bum at some point. I can be philosophical about it. But I am dumbstruck by the number of people on here who are so, so young. I cannot begin to imagine how it is if you are a young woman coping with a family and working too. I struggle to understand too. Is it inherited? Was there an illness that damaged your heart so much, or did you just wake up one morning not feeling right and sought out a diagnosis?
I note that you say you are in touch with the transplant team, so I hope this holds out the prospect of better days in the future and gives you a goal to look forward to beyond what you are feeling at the moment. I wish you the very best of good fortune.
Yes it is correct. I take medication to stop swelling and I have my kidney and liver function checked every month. Before my diagnosis I swelled up a lot. My condition is managed well with medication and tests done with the transplant team every 6 months.
My letter from my transplant assessment in march. Stating EF at 15%
hi ss3k my ejection fraction (EF) was 15% for years. This year it’s climb to 23% and I feel hopeful. So yes you can live with very low ejection fraction some people are under 15%. The meds these days can help a lot to keep you alive. My kidney function is 45 and as been for years. We take a lot of water tablets to reduce fluid and therefore reduce swelling. But fluid retention can be a problem. Usually at that low level we’re referred to Papworth to go on transplant register.
Dear mezy
“Having young kids and feeling generally well” is a massive plus to help get over the dread that you have hanging over you understanding your illness.
I really think first you have to know and then explain to others what this dread is all about.
I would imagine that it has a lot to do with your young children and the thoughts of you not being there in their later lives, it may also be a fear that you have regarding your illness and how it could progress with time, maybe you are basing these thoughts on other members of the family or close friends that you have seen suffer.
That is a problem that can make you confused and over think your situation, for there is nothing wrong about thinking about yourself regardless who is dependent on you.
The better you feel the more you can give {if you choose to}
On your medical side I am sorry that I cannot comment, on your mental side I can, you have such life gifts all around you that the thoughts you have on your illness makes you blind to.
So I personally think that you need more answers to help balance your life, please remember you are not alone, that dark place grabs now and again at us all, this site is full of uplifting and inspiring stories and so are your children eyes.
Take care you are in my thoughts and prayers.
Hello
I saw your post this Morning and ever since I have been sat thinking what can I say to this lovely young lady in hope it will make her feel better and I have struggled as I suffer with Mental Health , had a triple Bypass still cannot stop feeling full of fear and I am 59 and here are you bless you having to try and deal with all you have to deal with and I so want to say the right things to you to help
The first thing which is a positive you feel well that is good try and look for all the positives the negatives will have a party in your mind you need to try and get them to leave not easy but try and let them now they are not welcome and fill your mind with any little positive thoughts you can come up with
They have found what the problem is regarding your heart and now things have moved on so much that when we would hear the words heart failure and think O no that is it but not now with all the meds they have , procedures they can do so many live longer than those without heart failure !
You are in the best hands possible who will make sure you are about for many years to come to be with your Children keep telling yourself that over and over again
I would get some Counselling you could really benefit from it and I think this will help you so much , ask your Doctor to refer you and make sure you let them know how bad mentally this has affected you and you need support
Keep talking how you feel don't hold it all in thinking you have to put a brave face on and cope on your own
Everyday get up look through that mirror and tell yourself for today you will be happy and you will deal with tomorrow when it comes but for today you won't let this get in the way of you enjoying all the wonderful things you have in your life
During the day if you feel yourself worrying then just say ok I have had a worry perfectly normal I shall now start my day again and be happy
Maybe start a dairy and everyday start of with today I have every reason and will be happy because .......and list the things within that day that you have to be happy for
You have got this , you can do it and we will be here to listen and try and pick you up when you feel down the best we can x
A lovely write up to help this young woman with the problem of heart failure. I do agree that now with so many medications and knowledge about heart failure things will be OK and yes I agree that people with HF often live longer than those who do not have it. It is not a death sentence at all. I wish they would change the name of heart failure to something else. Thanks for taking the time to write this up for this young woman to help put her mind at rest.
I agree with you that the word Heart Failure should be changed and yes with all the medications and interventions they can do now people go on to live a full and happy life
Thank you for your kind words to me and I hope you are keeping well x
Hi Mezy, I was in a very similar situation to you last February diagnosed with heart failure at 48 (not as young as you) but I also had open heart surgery at 33. I also I have a young child. My ejection fraction was 27% and I was also terrified. It’s a horrible place to be in, however I gave up alcohol immediately and caffeine. I have recently had a review and over 12 months on my ejection fraction is starting to improve. (Now around 40/42%) I never thought this would happen. I think the main reason for that is Dapagliflozin. Which I started in January this year it’s a new drug out there diagnosed for diabetes (which I don’t have) but was found to help with heart failure. I also had an ablation when I was 33 after my heart surgery but that had amazing results and recovery is very quick. I found from my mental health point of view and walk (low level) helped, listening to calming music, talking with positive people whether that’s professional or not. But trying to allow yourself to enjoy the little things in life, but mostly still enjoying your children they are such a tonic. I never talk about my health in front of my daughter as I need to separate that. I feel like I am not helping much, but want you to know you will get there. Eat healthy, walk as much as possible and try not to overthink as there is so much new medication out there. But most of all keep talking and sharing stories. ❤️
your not alone in your situation, i was rushed in to hospital in 2019 at 39 with Afib and Heart failure in the same week my autistic son started school.
half way though that week after a cardioverison left me with multiple organ failure, my wife and i was told that in other words that i was the sickest person in the Critial ward and if my organs started shutting down that would be it for me. at that point i was just hoping to fight with what little i had left and hope that i could pull through to see my son again. I suspect my EF would have been in high single figures
it took 3 weeks in royal brompton of slow and steady improvements before i was released home to embark of my golden year of recovery with a bag full of meds including Entresto.
three years later, i am now operating in 65% at least as im waiting for my next results now and looking forward to being able to help my son grow up. my andiogram had cleared me of any potential blocking and i was feeling more confident but even after this in my last week in Brompton, i was given a nice dose of reality again as the patent who was a long termer next to me coded and died at 2am in the morning. unsurprisingly i didn't get much sleep after that, even so when i came back the nephew reached out to check on me which was kind of me but i did say to him that none of us are well in this ward and that i hope they have found some comfort that he is now out of his pain and struggles.
I am one of the 'unicorns' that the imperial college keep on inviting back for sudies which of course i keep on attending as much to say thank you some how to the NHS for saving my fat a$$ and helping me get back to my family proper. i hope they can find something in the study that can help patents who haven't been so lucky to improve.
I sometimes feel that its easer to recover mentally from what i went through was you slide so far to the edge of your life any way back from there is up and having a young child really helps motivate. at an early stage as i was so bad i was able to forgive myself for ending up in this state and now that the doctors would try their best with what they had available to help. the best thing i could think of is to have a really positive mindset within myself as being negative in that state wasn't going to help my body.
it still took me a few months to feel normal, an improvement in my EF 2 months after obs helped charge me up further knowing that i had a chance, i hope the same happens for you after this, sometimes I read back my texts of during hospital or friends after telling them what my diagnosis was, this helped when i got a bit down or frustrated at things and helped me gain back my keel. its so natural to have down periods, often i was helping my partner recover from the shocks even after a year of me getting better, of course covid didnt help her stress but shes a natural pessimist so it took her a while to get over things or at least to a point that is not worrying her from a day to day basis.
medical research in the heart is always moving, the drugs that helped me were only in use 3-4 years a go and before that many never recovered EF, it was just a case of managing a decline as best as they can. things can advance quickly if a beak through with a known drug happens.
finding a good friend or family member to talk to outside of your immediate family is really good to feel that you can unload to in batches can be a really good outlet. and if not, we are always here to support in auxiliary fashion. if you do have ablation do let us know how it goes. we are always here to talk when we can. love and hugs x
Hi. I can empathise completely with how you feel.. I m 51 and diagnosed with heart failure. I’m gutted that you are in this position, I really felt for you reading your post as I know what the uncertainty feels like. I was referred by the hospital to the psychology team, I’ve been assessed and I’m on the waiting list for treatment. The anxiety and depression we face following diagnosis is normal but what I’ve found helps is reading the positive and supportive comments here. I also walk my dog a couple of miles a day and take anti anxiety meds. I try to remember that there are people who are walking around who have had heart failure for a very long time and that it isn’t a death sentence. There are people on this forum who are testament to that. Knowing that you are not alone gives me comfort, I hope it will do the same for you. Pumping marvellous is a good website that gives plenty of common sense advice and is positive. If you get the chance, have a look. Take care. Xx
I'm just blown away by how young some people are on here coping with stuff we only expect much later on in life. As others have said, there is a huge amount that can be done nowadays with medication and surgical intervention that was science fiction not so long ago. Please keep your chin up and be assertive in making known how you feel to your medics. Good luck.
Hello mezy. Yep mental health is one he'll of a problem. Having been diagnosed with a congenital heart disease which I had from birth but it has only just been found. It has become one hell of a shock. Unfortunately I have suffered with anxiety for many years and iam on meds and talking therapy. But it comes in and out of my mind on a regular basis. The only thing that's keeps me going is to find the positives in your life and the positives that where found in the diagnosis. For me I look back on my diagnoses and there are many positives. Because my body has lived with it for all of my life. However it is hard. But I did talk to a chap at work who had heart failure and he is on medication and can do hill walking. He kept telling me stay positive.
Hi Mezy, a bit of a long post but hopefully give you some hope of how things can change for you. I was diagnosed with Dilated Cardiomyopathy, severe left ventricle systolic dysfunction with an EF of 10-17% and AF. Heart failure. I was reasonably fit at the time, gym 4 days per week and golf 3 times per week. Unfortunately on Boxing Day in 2021 I started in the morning with a bit of a cough and by 18:30 I was blue lighted into the Leeds general infirmary. I had never been I’ll in my life!. It took them a while to get me stable, I was in hospital for a week. What had happened was I had a virus which made me retain fluid around my heart and on my lungs. This caused My issue with my heart. Like you my brain went into overdrive, I went on Dr Google and frightened my self which nearly finished me off. Went into depression. I decided to get help and saw a Phycologist for 13 weeks as well as took up mindfulness. Never thought I would ever take this up but after a month or so it did help me. Luckily I was assigned a HF nurse straight away and over the next 12 months got my medication sorted out so I could get back to doing most things.
I’ve had lots of reasonable days and a number of bad days or as I call them rest days.
Thought my life was finished, however I decided it was also up to me to help myself. The physiologist certainly helped me get my head in a reasonable place.
Luckily I could still exercise, so started walking every day and a bit of golf( now with buggy) and some rehab. Plus help from HF nurse and took my medication as directed, changed my diet.
After 12 months there was minimal improvement in my heart function EF moved up slightly to 25-30%. This set my depression off again as I had not made much progress.
Had a cardioversion in March 2022 to try and get my heart Back into sinus rhythm.
Which so far has worked.
I do always push myself as far as I can,I also accept I need rest days.
Tried to be kind to myself.
I now walk 5k nearly everyday plus rehab twice per week and golf 3 times per week.
Yesterday I had a letter from my Cardiologist to advise on my latest scan.
He informed me that it showed my heart pumping strength of my left ventricle was now back into the normal range and there were no other significant concerns. Didn’t mention my EF%.
As he said in his letter this is excellent news. I was due to have a defibrillator fitted shortly which now is not needed.
He has reduced my bisoprolol but wants me to continue with my other meds for life. Not a problem,I’ll take that if it keeps me reasonably healthy.
I will still have a catch up with him later but he just wanted to give me the good news.
Sorry for the long post but thought you may find it helpful knowing others have been in a similar place. Don’t give up as new meds always come along, stay the hell away from DrGoogle( should be struck off!!!)get help with the head, always listen to your specialist and try and help yourself hard as it is, I know.
Hopefully things will improve for you and your family you Can improve, I never thought I would.
Once again sorry for the long post.
They have your best interests at heart-sorry for the pun- but at least you are on their radar, so can expect treatment to help alleviate symptoms, or surgery to help with the issues you are experiencing. Try not to worry too much-that can't help, and take comfort that your problem is now known to the medics. Make a list of symptoms, fears etc, so you go armed when you have an appointment, and make the most of the advice and suggestions given. Also, take this as a signal, so you can start to take charge of your own health. Good luck.
The thing is that what Heart Failure means is that the heart is not pumping and doesnt actually mean the heart has failed — it means it’s not pumping blood as efficiently as it should and there are tablets now to help the heart pump efficiently so you have no need to worry. I do wish they would change the term heart failure it is frightening and doesnt mean your heart is about to fail. Hope it all turns out well and you can stop worrying.
Hiya I just wanted to say thank you so so much for all of your lovely, kind & helpful comments, they have honestly really helped me & I am starting to feel more positive, and maybe I will improve more in time. One of my greatest blows is that I wanted to have another child and that at the moment is heavily inadvisable, which makes me feel so sad, but maybe in time that could change ❤️Truly thank you for all your support, I am so glad I came on here xxx
I’ve been living with heart failure since I was in my early 40s I’m now 62. 6 years ago I was told Im going to need heart transplant. I was put on Entresto and as time as gone on dapagliflozin I’m still here. By the way my function was 15% for years last year I had echocardiogram it is now 23%. Speak to your heart failure nurse about how you’re feeling. That’s what I did. It’s only natural especially as you’re so young and have children. Many people have given you some good advice. Try and stay away from negative doom and gloom stories. You have life still and it’s for living. The medical field as come very far and I believe it’s improving all the time where the heart is concerned. I’ve lived far longer than I expected. I don’t want a transplant. I want to just enjoy the years I have left. Speak to your GP also.
Hello there. I am also 38 and had a suspected heart attack at 35 and was left with severe heart failure with 12% ef rate. I was extremely fit and had a active lifestyle with 3 kids. My world was turned upside down.
I fully understand and it is still a battle each day. Its tough to stay positive but youll find it helps with everything, the symptoms and aniexity. Staying active and eating better is probably the best thing you can do. My ef rate is now above 40%. Good luck
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