Hi! I was diagnosed with severe heart failure only a month ago, 2 days before I gave birth to my first baby.
They found 50% of my beats were ectopic so I had ablation to remove these, which was successful. I also have an EF of 30%. They're hoping now that the ectopics have gone and I'm on medication, and also not under the strain of pregnancy, that my heart will start to strengthen and improve. I am desperate for this to be the case.
I am 30 years old and have been told they're reluctant to give me the implantable defib as they're not sure how it will cope being used for so long as it would be implanted in someone younger than usual... in the meantime I have to wear the Life Vest which I absolutely hate- I'll save that for another post!
Does anyone have any tips on how to help strengthen the heart alongside all the medications?? Or even words of encouragement where your heart has improved over time? It all feels so hopeless at the moment 😔
I have always eaten well, exercised regularly and rarely drink alcohol. It feels like such a scary diagnosis and a lot to digest on top of becoming a new mum.
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Healthaddict30
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Yes, they hoped this was the case, but sadly it's not for me.
It was underlying for many years. It was first found that I had bigeminy 10 years ago but they also found other issues that they said they couldn't explain, but as I felt well they think it was 'normal for me' and didn't investigate further!
They're now saying they think it's just been progressively getting worse over the 10 years and having a baby pushed my heart to its limits and caused it to become 'severe'.
I feel so angry at the consultant 10 years ago for just letting me go and not organising any check ups over the years. This could possibly have all been avoided!! 😩
I am sorry to hear that your heart condition wasn't taken seriously. Sadly, a recognised problem that women can face. I was misdiagnosed over 11 years ago and not given the appropriate treatment.
I acknowledge your anger and disappointment of the missed opportunity to recognise your heart condition earlier.
Hopefully now that your heart condition has been identified, you'll be offered better treatment which will improve the quality and length of your life.
Are you aware of Pumping Marvellous?
There are several forum members who live with heart function problems, hopefully they will be along to share their positive experiences with you.
I hope you have a lovely Christmas with your new baby and family.
I am not an expert on this at all but first Congratulations on the birth of your baby
I can understand that this is such a lot to take in been a new Mum is overwhelming this on top must feel over powering and I can understand why you feel it might have been avoided adding to how you feel
The medications and things they can do now is so much more advanced and so as much as you can try and stay positive there is so much they can do
I just wanted to let you know we are listening and others hopefully will see your post and be able to give you better advice than I can on this but I am glad you have found the Community and hope as so many do you do not feel so alone and have somewhere to come and talk which hopefully will help even if just a little bit x
This is so kind thank you for your message. I'm already feeling better that there's so many others dealing with similar diagnoses. It was so sudden and unexpected, it's really knocked me sideways.
Thank you again and hope you have a lovely Christmas x
Hi just wanted to warmly welcome you to this group. Congratulations on your baby 🥰. So sorry to hear about your recent diagnosis must of been an awful shock especially since it could of been avoided if you had regular check ups 😔🙁😰. I don't have any experience with heart failure but I just wanted to welcome you and wish you all the best x
I’m so sorry to hear what you’re going through as a young Mum, it must have been a huge shock. My husband was only 39 when diagnosed with heart failure and he had an ICD fitted approximately 9 months later. His heart failure had gotten significantly worse (EF dropped from 35% to 14%) so his cardiologist decided it was essential. He had it implanted subcutaneously which is apparently better for younger patients as it is less invasive and can be kept under the skin for longer periods of time with lower risks of infection, but the subcutaneous implant isn’t always suitable and some people need to get it implanted intravenously. Over time it can be harder to remove an ICD which has been implanted this way, as it becomes almost embedded in the heart vasculature. Also, I believe an ICD is only considered if the EF is below 35%. As your diagnosis is new and it’s hoped your heart will improve quickly now that you’re no longer pregnant, you may soon get to a point where you’re no longer eligible for an ICD and you don’t need the life vest. So holding off on the surgery for a few months is probably sensible for now! If your symptoms worsen and your EF gets any lower or doesn’t improve, I would put pressure on your team to consider the implant. Is there a plan to recalculate your EF any time soon?
Your cardiologist doesn’t sound great from what you’ve said about him leaving you for 10 years with no follow up, would you be in a position to get a second opinion? If seeing someone else on the NHS isn’t possible I’d strongly recommend finding a cardiologist who works at a private practice but also at your local NHS hospital, and booking to see them privately. We did this and the cardiologist saw us for two private appointments and then just saw us in NHS clinics after. He knew we couldn’t afford to keep paying and we were a bit lost in the NHS system. If we hadn’t have done this I dread to think where we’d be now!
I hope you get the support you need and can enjoy these precious first few months with your baby!
Hi there!Thank you so much for your reply. That's really interesting about the ICD and eligibility for one, I hadn't been told this by my cardiologist. I think the one I would have would also be just under the skin but they're still reluctant to do this. I'm grateful for this in a way that I believe they're hopeful it will improve, but I'm just anxious that it won't and I'll need the ICD 😕
I'm so pleased the private specialist was so kind and reasonable to get your husband through with them on the NHS.
I hope your husband is experiencing improvements and never needs to use his ICD.
Does heart failure run in your family? Or any other heart conditions?
I had an ICD implanted age 37, so I would push back on the decision not to give you one if it’s based on age alone! Advocate for yourself - you deserve the best treatment available because you are young.
My ICD has 8 years battery life left on it, and once it has run out, I will get a new ICD implanted in the same position, using the same wires. Please challenge the doctors if you think an ICD is the best treatment for you.
Thanks so much for your reply! This is reassuring to hear and I'm glad the ICD seems to have worked well for you. Has it ever been needed so far? Or have you had any complications with it? I'm not sure how similar it is to this life vest that I'm having to wear, but the life vest seems so glitchy with the possibility of it going off accidentally, that it scares me to think of having an implanted one that I can't 'take off' like I can with the vest!
I haven’t had any complications with the ICD. It paces me around 60% of the time as my natural heart rate is very low.
I have a check up with my cardiologist every 6 months. The ICD monitors my heart which can inform the cardiologist on what medications could help me or change the settings of the ICD to make my heart beat more efficiently.
The ICD machines are very smart, they have something called anti tachycardia pacing which means that it can reset your heart’s abnormal/life threatening rhythm without needing a shock. Your cardiologist can also prescribe anti arrythmia medications if you’re suffering arrythmia which should also reduce your likelihood of receiving a shock.
Do you have a formal diagnosis? I have LMNA cardiomyopathy. It’s a genetic disorder which I inherited from my mother who had heart issues. An ICD could have saved her life, as she died of cardiac arrest aged 50.
Sorry to hear you have heart failure. Congratulations on the birth of your first baby. Maybe now you’ve had the baby your heart might begin to function better. It seems like you lead a healthy lifestyle already which is good. I’ve known some people to go from 10% heart function to over 50%, so hopefully that will be you. When I had my first ablation to get rid of atrial tachycardia they discovered after the ablation my heart began to pump better. Let us know how you’re getting on and All the best.
This is so reassuring to hear, thank you so much for your reply! I wish my cardiologist would give me success stories like this... they are very skilled and knowledgeable but never seem to have any positive information like this for me.
I'm so glad the ablation has worked for you, that's great news! I think they are hoping this will be the case for me too and my heart will get stronger.
Thanks again for your reply, and hope you're having a lovely Christmas time 🎄
I think they don’t say much because everyone is different so they don’t want to give false hope. That’s my story but there will be some whose story will be very different. Just think positive and you will be fine. All the best
Hello there and massive congratulations on your new baby. I'm so sorry to hear you're going through this. I was also shocked to discover a year ago at age 48 that I was suffering from severe heart failure despite being fit and healthy. Apparently this has been underlying for years until now with no family history of heart issues .My EF was 10% a year ago and 9 months after my diagnosis was 44-50%, so thankfully a great improvement thanks to the medication. I also have an ICD fitted, but as the meds have stabilised my condition, my ICD hasn't had to do any of the work thus far and is just sitting there awaiting instruction if ever needed.
I really hope you start feeling much better really soon, so you can get back to living life to the full with your new bundle of joy 🤗
Thank you so much for your reply. This is such a wonderful success story, I'm so happy the medications worked this well for you. It gives me hope that my heart will also start improving soon.
Are you aware of the ICD at all? Does it cause any issues day to day or is it just nice to have the safety net there if needed?
Thanks again! Wishing you a lovely Christmas time 😊
Hi Healthaddict30 . The majority of the time I actually forgot the ICD is there ti be honest. It's reassuring knowing that it's just there ready and waiting should I ever need it. Like having my own personal paramedic with me 24/7. The scar us very small too. It's the same size as my c-section scar, so I still feel confident wearing bikinis. I'm still able to do most things I did before like weight training. But you do have to always check that things don't have magnets, as it can affect tge device working whilst close to larger magnets. Just gutted I can't go on roller coasters anymore, as my family loves them! But it’s a small sacrifice to make. It's more important being here for my little girl and being fit and healthy again.
Wishing you and your family a wonderful healthy Christmas xx
I am 45 and fit and healthy with a decent diet etc so it was quite a surprise that my 'asthma worsening' was indeed heart faliure.
I was diagnosed with severe heart faliure with ef of 24 %, severe mitral valve regurgitation and left bundle branch block in Feb this year. After 2 months my ef was the same.
I was referred to Papworth for transplant assessment in June this year yo make sure I was a suitable candidate if things worsened.
Since then have carried out lots of research and taken advice from others on here also re what to do to best enable recovery.
After a further 2months of recovery and lots of studying and questions i decided that along side my heart meds prescribed by my cardiac team I would take:-
Ubiquinol
L carnitine
Tuarine
I also take many other supplements for general health.
I daily walk approx 5 miles, which I built up to slowly once I was stabilised. I have a low salt diet which I think is very important, as do several of the cardiac consultants I have seen.
I have added organic foods, and nuts, berries and keffir yoghurt to my diet daily.
After this second 2 months I had a scan and my ef was back up to 38% on two scans.. (I paid for one to double check). So a 50% increase in ef. My mitral valve has all but closed up, and my bundle branch block has gone.
I am now waiting for another scan in February which I hope to have made further recovery.
I combined my findings with thst of advice of a good nutritionist. And always check with my cardiac team that they are happy with everything I do, before I do it.
They are very happy with my efforts and said I was a breath if fresh air as I took it all so seriously and was doing all I could to help myself.
I qualify for transplant, but I do not want to sit back until I need one. I am a fighter and it sound like you are two.
My two young children were my main motivation for doing as much as I possibly could to get better. And I am at the moment.
I would encourage you to do the same. You are young and otherwise healthy.
We are all different and have different recovery tines etc, but if you just take your time, do your homework and listen to your team you will have the best chance you can get.
I wish you and your young family the best of luck. It'd a scary time. But things to get easier with time. Rest is also very Important. Easier said than done with little ones I know. But it's so important to rest when you can. Muscle(heart recovery is mostly done in deep sleep. REM.
Have good Christmas, and enjoy your baby, they are so precious. xx
Wow this is such a success story! Thank you so much for sharing it with me, this has given me a lot of hope.
I'm so pleased you were able to see such great improvements from everything you did. I will definitely be doing my own research and I'm very keen to start building up to more exercise. I was a keen runner before I got pregnant so being this inactive is killing me right now.
Can I ask what your blood pressure was like before you changed your diet and what it is like now? I have a very low blood pressure, so I'm struggling with all the heart meds that lower BP. It's also tricky for me to lower my salt intake as again I seem to need it to raise my BP to a normal level... although I'm very conscious that salt isn't very good for the heart.
I’m in the same boat as you in relation to BP and was told when I was in CCU to up my salt intake to help it.
I also struggled to tolerate beta blockers and ACE inhibitors so I now take ivabradine twice a day. Originally I was prescribed them with dapagliflozin but they think I had a reaction to them and so I no longer take them.
Ooh yes this is very helpful. My BP dropped so low when I was on higher doses of the meds that I was so unwell and sick. They lowered my doses and they all seem quite bothered by that and are keen to increase them again but I'm not sure, after feeling so unwell from them.
I'll look into ivabradine as they haven't tried me with this just yet.
So my bp was always 120/80. I was also a keen half marathon runner.
Since being in hospital and being put on my meds my bp has been ranging from 87-100/56-70.
Typically it is about 95/60.
I have never heard about salt increasing Bp, but we are all different I guess. When I was In hospital for a few weeks on restricted fluid, I was encouraged to drink amd eat more when my bp was low. Its was down to 80/50 some days. Dehydration causes low bp. So as salt causes dehydration its odd that for you they suggest more salt. ??
If it were me I'd check this maybe?? , as the salt increases the retention of fluid in the body, (although dehydrated??) and the fluid in the body puts more strain on the heart. So not good for myopathy or any heart faliure.
I shall ask my cardiac team about this, and my nutritionist. I find it all quote interesting.
I shall let you know what they say. I'd be interested to hear what your guys say. It's all a learning curve hey. Something new everyday.
The excersise should help also. I went from being tired/out of breath after a shower to 5 miles pretty quick once the meds were introduced.
Dapa, entresto, Bisoprolol, ferusemide, and epleronone. Now on tip doses of all. But that took 6 months.
Welcome to the forum and congratulations on the birth of your little one!
I was diagnosed with dilated cardiomyopathy and borderline severe heart failure in January 2021. It’s believed that it was triggered during my first pregnancy back in 2018 but it was missed on multiple occasions by my GP and during my second pregnancy.
My EF at diagnosis was 37 and now is around 45 (with medication). I’m proof that it can get better so I hope it helps you feel better.
It’s definitely a big event to get your head around and I empathise with your frustrations around your diagnosis.
Speak to your heart failure nurse/GP about the sorts of exercise that might be beneficial for you.
I have 3 children and have been told that I’m not to have any more children by professionals. I feel very fortunate to have my babies.
Don’t lose hope, things can get better! Sending you well wishes for a speedy recovery and the hope that you can find a way to enjoy your new normal with your beautiful family.
Hi there! Thank you for this, that does give me hope! I'm so pleased your EF has increased and you managed to still grow your family safely. I hope my heart improves in a similar way. It is such a scary diagnosis on its on, let alone when it starts affecting your babies/ability to have more children.
Thank you for your reply ❤️ I hope you have a lovely Christmas and your health continues to improve 🙏
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