British Heart Foundation
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My husband has heart failure at 49 and was otherwise fit and healthy ! So worried about the future with severe LVSD

Apologies for the long post first of all and thanks for reading. So my husband became aware of a problem after I forced to him to go to the GP with breathlessness. He assumed it was because he had a cold that it had affected his very mild asthma, so at best he was going to the gp for a new inhaler. His vitals were taken and he was found to have a heart rate of 150-170 bpm and was referred immediately to hospital. Initially he was diagnosed woth atrial flutter however after three weeks, and 5th line pathway drugs it still hadn’t altered. He was admitted for 24 hour hour monitoring where they detected two problems one with his pump and one with his rhythm. Amiodarone was given which brought down the heart rate however following an echo discovered he had a very enlarged heart and severe LVSD as a consequence . He had an mri last week and his due date for review is the 30th April with his cardiologist. He was told that he has 23% output. He was told this was all brought on by a virus. He has no other underlying health problems at all literally had a cold that lead to this ! My question is, can he come back to “normal” from this? Is it likely that the severe LVSD and the 23% output can improve over time? He has his head in a place where he thinks I’m time everything will revert back to the way it was and he will be off all of the drugs however my outlook through research isn’t as cheery?

He feels and looks so well in himself that you would never know , until you attend the heart failure clinic, then of course you know different!

Any advice where people are in the same situation would be greatly appreciated as I’m worried sick right now. Thanks in advance x

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First of all, stop worrying! It doesn't do any good.

I had a virus at Christmas 1995 which set me off with heart disease which lead to bypass surgery. I was very fit before that. The good news is that I am still here! So, your hubby stands a chance, especially since treatments seem to have improved a lot since then, e.g. they didn't have stents back then.

What is LVSD?

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Hi Jimmy

Thanks for your swift reply! Oh my word, you have been through it??? I hope you are feeling ok now! You are right I shouldn’t worry but it’s only natural when it’s unknown to you? LVSD is left ventricular systolic dysfunction, essentially it’s the amount of blood the heart is able to pump out . It’s measured as a percentage hence my husbands figure of 23%. Apparently “normal” isn’t 100% as you would think but around 55% so therefore he’s not operating at 25% nit at 50% is that makes sense?

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Hi Lynn. Sorry to hear about your husband. I think it’s important for you and your husband to discuss with your cardiologist. The problem with looking at stuff yourself is that there’s so much information out there which needs sifting and assessing it can be quite overwhelming. The BHF have some excellent resources so if you are going to look at anything I would start there but try and do a list of questions for your cardiologist so you get the best out of the consultation. Try and look after yourself as well because it’s a stressful time waiting for appointments/tests/consultations. The BHF have a helpline that can offer help and advice also you may want to have a chat with your GP she/he cannot discuss your husband with you but may help with discussing general principles. It may help to give you information so you can then discuss with your husband. Sometimes not knowing and understanding is more difficult than knowing and dealing with the information head on. As Jimmy said research and developments have come on leaps and bounds. This forum is a good source of support as is the BHF. But in all of this you will also need to think about your health and well-being so take care of you. I know it’s easy to say try not to worry but make sure you get support so that you can help your husband. Stay strong and take care. Best wishes Zena

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Hi Zena

Thank you so much for your detailed reply and you offer some very good advice and pointers . You are absolutely right about Dr Google I try not to but you can’t help yourself sometimes ! The problem o have of asking some of the frank questions in front of my husband as for him ignorance is bliss . At the end of the day if he copes with this then that’s great for him however I need to know all of the detail. I don’t want to upset my husband by informing of things he’d rather not know but I need a realistic picture. His cardiologist has tried unsuccessfully to call me while I’ve been at work as I’d expressed this worry to him and fair play he has tried.

I do hope you are well yourself Zena, and I’m so grateful that you took the time to get in touch. It’s lovely to know that complete strangers will take time to write and act as a sounding board even though you yourself are having similar problems.

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I understand why you don’t want to discuss in front of your husband at the moment. In the future it will be important that he has as much information so he can have the best possible treatment and care. Good that the cardiologist has tried phoning. Maybe speak to his secretary to actually book a convenient time. Everyone on this site is really helpful because we understand the process that others are going through. There’s a saying something like we’re not strangers just friends that haven’t met! Keep us posted and do take care of yourself. Zena

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Thank you that’s so kind , it’s true isn’t it and the cliches are around for a reason I suppose !

We will see him together on the 30th so maybe I can book a slot with him then? Good idea ! I knew it was a good idea to join a forum!!

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Hi Lynn. Some heart failure patients respond really well to medication, others don't, but even if medication doesn't help, there are other avenues of treatment to explore too, for example a device like a CRT-D, which a few of us on this forum have.

Heart failure is not a diagnosis anyone would want to receive, certainly, but in all likelihood the situation is not nearly as bad as Google would lead you to believe and is certainly not hopeless. As others have said, the information you get from doctors and the BHF will be more relevant and probably less doom-and-gloom too.

When I was diagnosed and admitted to hospital, I could see the doctors having serious conversations with my husband in the corridor and that made me furious. I might not have wanted to know everything at that point but I also didn't want my husband knowing things that I didn't. So I'd be careful how you handle talking to the cardiologist, though I do agree it's the best idea if you do want a clearer picture. Do be prepared for the fact you might not get clear answers, however. It's very early days and it can be hard to predict how any individual will respond to treatment, so you may need to be patient and see how things go over the next 6-12 months.

Hope you get some answers (and some good news) soon.

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Thank you so much Laura . You talk a lot of sense ! You’ve been there and in the hardest of times during pregnancy. I hope you are feeling well and making inroads to recovery . I just feel like I need answers now in case we are working against the clock . I’m probably being fearful of worst case scenario and he’s not as bad as I think and I guess coming on a forum like this will give me reassurance . You are proof of getting on with it and living with this so I’ll use you as an example xx

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Hi Lynn. It’s a late reply because as usual I am sitting up as can’t sleep with the 148bpm I have now been doing non stop since last November. I was diagnosed with narrow complex tachycardia years ago which was controlled by medication for many years. I have undergone five ablations with no success. I constantly asked my cardiologists and subsequently my EP to reassure me that I wasn’t going into heart failure and was always told no it’s fine, your heart is holding up well and is robust. Then in February after the last ablation I was sent for yet another Echocardiogram which confirmed LVSD ejection fraction was noted to be 32%. By this time breathless and coughing. Finally told that after such a long time of fast heart rates for too long my heart was turning. My only option now is a dual chamber CRT device and, some weeks following this an AV node ablation, where they disconnect your natural pacemaker and you become pacemaker dependent. I have been told that this will improve my quality of life and improve my ejection fraction possibly to near normal. In other words they are saying that the future is not bleak but the HF May be reversible. Whilst I don’t relish the idea of being pacemaker dependent and, it won’t cure the fast rate, it will allow the ventricles to beat normally and pump oxygen more efficiently and I won’t be as aware of the fast rate any longer. It’s a ventricle saving procedure which helps halt the progression of any heart failure there may be. It’s worth speaking to a Cardiologist/Electrophysiologist and asking about whether a ‘pace and ablate’ procedure might significantly improve your husband’s quality of life and prognosis. Hope this helps a little and so hope there is a solution ASAP.

Take care

Lee

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Oh Lee I’m sorry to hear that you are going through this. I hope you are bearing up given you are having to go through this. As like the other lovely people who have also responded I’m very grateful that you’ve kindly taken the time to reply especially in your situation . It must’ve been really disheartening to have repeated unsuccessful ablations and all that time your HR is running so high . We don’t actually know how long my husbands had been running at high for, I’d picked up on it about 6 months prior to the hospitalisation with a home blood pressure check but he passed it off as the cuff not fitting his arm properly so there’s that frustration in the back of my mind thinking what if we could’ve caught it earlier ? Anyway like you the damage of it long term is now real. Are you well in yourself ? Did they pinpoint why it started for you in the first place ?

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I developed Atrial fibrillation about 30 years ago had first ablation finally 12 years ago. That got rid of a/fib but gave me atrial flutter. I managed with pill in the pocket propanalol for some years then it didn’t work so well so I started sotalol 80mg daily which worked well for many years. Five years ago I followed advice of EP to have another ablation so I could stop all drugs. I went ahead and they couldn’t map the arrhythmia but went ahead and ablated the top of my left atrium. As a result I was Cardioverted twice and went from 80mg to 250mg sotalol over he next two years. Saw another EP he did another ablation got me back to sinus but only lasted 36 hours cardioverted again but it came back again at 148bpm. Two months later another ablation and this time my aorta was punctured whilst placing the wires in my heart. Had a cardiovascular collapse was resuscitated transferred to theatre and had emergency open heart surgery to save my life and put on life support. That was 11 months ago. Three weeks ago had a last attempt at ablation under TOE to make it safer. Performing well at 148 but when needle was pushed through the shock to the heart put it into sinus rhythm which lasted three days then back to the usual 148. Then echo nd the rest you know.

What drugs is hubby on now?

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Oh my !!! you really have been through the mill. It must be a constant worry? We thought they were never going to get his HR down but the amiodarone seemed to be the toxic one to do it ?!

It’s a case of what isn’t he on? Lol! The worst one is amiodarone, preondopril, ace inhibitors , bisoprolol, apixaban and was on digoxin bit that has been stopped recently .

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Would definitely ask about pace and ablate, or the three lead biventricular pacemaker. Keeps both ventricles pumping nicely and he may need less drugs. Amiodarone is ok short term, it’s the most powerful one there is, but long term lung fibrosis is a real problem. Go well armed with questions if you are seeing a specialist and good luck. By the way was hubby doing a fast rate at the time Echo was performed? If so, ejection fraction is difficult to assess as the ventricles are working overtime, so the measurement isn’t reliable. It may be a bit higher than the actual result. Another question for the Doc maybe. Keep in touch would like to know how you get on. Hugs!!

Good luck

Lee

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Sending you hugs..hope the lovely replies you've received have helped reduce your worrying..write a list of questions you may have for your cardiologist when you and hubby see him on the 30th..thinking of you both x

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Thank you so much Sandra. Yes things are seeming a little brighter now, I appreciate your good wishes x

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Hi Lynn,

I was diagnosed with HF 8 weeks ago , I’m 48 and similar to your husband they were treating me for asthma, my asthma nurse couldn’t understand why non of the inhalers she was prescribing weren’t working ( surprise surprise!) they thought my increased heart rate was due to my reliever inhaler , I knew it wasn’t, I didn’t feel right, you know your own body! Anyway to cut a long story short , I went to A&E and was admitted, I was told that I had HF with an EF of 27% ! They put me on meds straight away, the difference was amazing! I feel great! I’ve had my MRI and CT and have my first appointment with the cardiologist team next week! I feel really positive, now I know what’s wrong I feel I can meet it head on ! This group on here are amazing! Good advice and a friendly ear ! Don’t look at Google and certainly don’t joint any support groups on Facebook, all doom and gloom! This site is a godsend! And things will return to some sort of normality, it just takes time! Xx

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Oh wow?! Very similar story indeed. Firstly I hope you are feeling better, obviously now my hubby knows the difference he feels great! I hope you are too! Anything heart related is very scary, and the unknown is terrifying ! I had read the first few posts on google and as you say it was doom doom nd more gloom! I’m pleased I’ve found this site as people are so helpful, including your good self . Thank you so much for your reply , you are literally a mirror image of my husbands condition . I should say he is called Andy as opposed to keeping him as “husband”! I hope you have good support around you and look forward to following your progress. Please do let me know how you are getting on x

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Please don’t get down heartened, I do have my ‘off days’ but my husband Barry is very supportive and encouraging and that makes a huge difference! Last week was a bit emotional as I had both my scans , that made it seem very real if that makes sense! But I keep telling myself, it is what it is, it’s how you cope with it that counts! You can’t change it, I’ve done some research and startled taking Coenzyme Q10, supposed to be really good for the heart. Initially I felt a bit cheated as I watch watch I eat, I’m not over weight ( well not by much 😂) I have a fairly active job and I limit my alcohol to weekends! My GP had been great, regular blood tests to keep an eye on my kidney function! So all’s good! I feel better than I have in a long time! You should get Andy on here , make a big difference to your state of mind to see what everyone else is going though and more importantly the positive comments xx

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I know he wouldn’t join ! Lol that’s why I’ve done it by proxy! He wouldn’t go to the GP for months for goodness sake, ha ha so I’ll never get him on here . He doesn’t appear to be worried about the future but I’m sure he just hides it well. I ask him if he’s ok but he’s a typical proud man. He was very dedicated to his work and I’m sure he misses his colleagues but he’s busying himself with his motorbike hobby! X

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Hi I have had heart Failure for a few years I got really fed up with doctors giving medication. And keep changing it having a lot of time on my hands I did a google Search if your husband is on statins which I am on a large dose any way I found that taking co q10 has changed my life so much my heart failure has got very stronger but they do cost a fair bit you can get them through your go but most doctors don’t like giving them they will not harm you in any way it took about a month to kick in but now I feel a new man please try them all the best tweety.

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Oh thanks for this advice I will certainly ask about these ? Are they given on prescription ?

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Hi you can get them from your gp but they don’t like giving them its all to do with the pharmaceuticals it not supplied by them it a herbal they don’t like that as you might know if your gp won’t supply them please buy them they will do no harm only good good luck tweety

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Don't you think that the suppliers of CoQ10 would be equally anxious to promote its use despite limited scientific evidence? We should also take in to account the level of testing for supplements is way lower than that for approved drugs i.e. need to establish 'no harm' and less emphasis on theraputic values

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Hi I do get what you are saying I don’t really want to get into this to much I know we’re this is going,herbal supplements is fighting a losing battle big time all I know there is no cure for heart failure my search on google took me to co q10 but there is good sites and bad I went to a good site and bought some I was really low and could not walk 5 yards one month later I am a new man there is only good in that all the best tweety

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Didn’t mean to be overly challenging but I see it at a potential Supplement - not a replacement for medication. Really happy that it has worked so well for you. I have considered it although I do do not suffer any recognisable side effects from the usual raft of medicines most of us have!

All the best

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Which ones did you go for? Want give these a try but the capsules are so big, cant swallow big tablets.

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I too have recently started taking co q10 and hope I get the same results.

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Have they made any difference? I'm looking for some easy to swallow one. So many are too big.

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Not sure if they’ve made any difference because I’ve been put on Entresto now and haven’t had any tests to see if there is a difference. I take co q10 in small capsules which are easy to swallow.

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Hi Lynn just to reiterate what some others have said.. . For those of us with low EF Scores and LV heart failure a device called a CRT may be offered which through electric pulses allows both chambers to pump in sync and gives your heart a much better pump output. This device does help you feel much better and helps stop deteriorisation too.

I think it's important for you to be aware of such devices that you may be offered... as any kind of surgery often panicked us.... but lots of us on here have had a CRT device fitted and felt much better for it... so if you are aware of these types of potential suggestions beforehand and how this can help your husbands quality of life .... long term ... it will be something you are more likely to embrace rather than run from . Now in case you do read my posts... I have had some recent issues with mine ( I am in that 1% bracket lol) however I know how good it is and how well it makes me feel that I am electing to have another op to get my CRT working.

They may not offer this route... they may go down medication route... but just wanted to reassure you that if they do.... it' a good thing. If course you are going to be massively worried but take heart ( forgive the pun) there are a lot of us wonky hearts out there living life. And the good news is they have discovered and so can treat it. Do let s know how things go at the end of the month. And you are not alone Karen xx

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Oh Karen , what a difficult time for you . Nothing seems to have gone right for you however you are still really positive which is great. Do you still have to take lots of meds too? How long was it before they offered you a device and how long have you had it? I suppose we won’t know of there has been a response to the meds until the end of the month when he gets his MRI nd Echo results? I don’t really know how long they give you as an average “recovery” time ? I hope everything goes well for you , keep me posted x

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Well Lynn my situation is a bit different as I have had HF for 23 years! But when my number went down to 32% last Feb... they did the same as tour husband is having...

Mri scan

Echo

They also checked my arteries... however your husband may have had that check when in hospital.

Everyone'medication is diffetent... for me they upped my ramipril... but the main thing was going through the tests... as they want to ensure they have covered everything before they make a next steps decision. And I took that as a positive as they want to ensure they can have a really good view of the heart and performance and cause... and this will help them give you the RIGHT treatment for your husband.

For me once the tests had been done and they got me back in they then told me ( in May) that they wanted me to go down the CRT route. They assured me I would be ok in the interim... and the waiting time was about 3 months. ( however I got a cold just before! Only me... so they postponed but I was then brought in a month later... you don't go to the back of the queue if for any reason there is a postponement. So I had my op last September.. .. and literally felt better the same day!! It's that instant. The recovery is quite quick too... I went back to work... part time... after 2 weeks. Although if it takes a while longer that's fine too.

Having just had my second op I am again back to work after 2 weeks. And yes I will go for a third attempt as I felt great for the 7 months it was in.... and it helps your heart to feel like normal again. And the recovery is quite quick too.

This may not be an option for your husband... but I just think it's helpful to be aware in case it is offered. I assume... now they have done the tests on your husband... they should give you a diagnosis and treatment plan ( whatever that is) at your next appt.

Good luck and all the very best... and trust me there is life after these horrible scares. Sometimes I feel lucky... as I appreciate life more and I go out and see friends and enjoy meals out and theatre... and laughing even more. And I don't get down about the little things. But I have had a lot longer to absorb everything. But PMA goes a long way to getting you through ... and you will both get through this. Xxx

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Oh wow! 23 years???? That’s very reassuring indeed . In my head it was hugely life reducing and I was thinking the worst bir many people on here have been living with HF for. Long time and with positive results: I’m really happy that you have had a good experience and you aren’t dwelling on the tough stuff . I’m so pleased you’ve taken the time to message me in detail as I now feel good about further options on the future . Thank you . You don’t know what good you’ve done today 😘xx

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Oh you are most welcome.... and hey I plan on living another 20 years plus ... no reason why I can't 😁.

I do have a healthy lifestyle now

I don't drink alcohol ( no hangovers and still as much fun)

Mainly fish and chicken.. . Lots of fruit and veg . ( I bought a smoothie as it's a nicer way to eat lots of fruit)

And exercise which is also important. Once you have had your husbands treatment sorted out ... do ask the heart specialist for rehab .... it can be daunting knowing how much we should push ourselves and worrying if we are doing damage.... so we can resort to doing nothing ( and this is bad for the heart) so your husband should be able to get on a rehab course.... but they rarely offer it. But if you ask for it they put you forward. It's a 6 week course... and for me it was about giving me the confidence to push myself... and it so helps you feel better and gets the heart working. ( of course this is after your husbands treatment is in place) but is well worth it. Even if he doesn't want to go to all the sessions... they will set a programme and give great guidance... and call every two weeks to check progress and answer any questions he has. And it will get him feeling like he is back on track ( and it will help you too... and you can go walking together 😎 )

I am glad you have seen it's not doom and gloom and he is young which all helps him. I was just 33... and now 56.... but look younger I am told 😂😂.

There may be lifestyle changes like above... but they are all positive too. Do keep us in the loop xxx

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Has he stopped work all together? I’ve been on sick leave for 8 weeks, weird as I don’t feel ill! I’m holding to go back after my cardiologist appointment next week 🤞, hopefully he’ll give me the go ahead to return, I hope so as it’s doing my bank balance no good at all! I can’t wait to return to work, I’m missing the craic and my job itself, I’ll be on phased return to a few weeks which will help . Xx

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Hi yes he’s been signed off . He’s a police officer so can’t be in confrontational environments due to the anti coags , they won’t take that risk with him . I really feel for you having to worry about that decision of returning to work due to financial reasons , it’s an added pressure that you really don’t need . Andy is the same he misses it And as you say feels fraudulent almost as he feels well . I hope your appointment goes well , don’t rush back if you’re not well enough , you’ll only set yourself back x

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I too have a recent diagnosis of severe LVSD.I have recently had an angiogram which showed no blocked arteries but came away with yet another diagnosis of CCF. The consultant thinks it’s possible a virus is the cause. On all the usual meds and do not get breathless as before. Now I have to have a 24hour ECG in a few weeks time. I have been off work now for 3 months. I work in a care home and workload can be quite heavy at times. I just feel I want my life back, everything is about medication, hospital and doctor appointments. Your husband must feel the same, I expect like us all he has inner feelings of fear for the future. I hope everything settles down very soon and your family can get back to some normality. x

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Oh I’m so sorry to hear this. When it’s unexpected it’s a shock as it’s never the news you are waiting to hear . You’re sounding like you’re still in that shock phase and having to adjust to what has just happened. It’s not easy at all. I was filled with dread to be honest however reading people’s experiences on here has made me realise that it’s not all bad . Keep in touch won’t you and let me know how youre getting on. We’re all on this together x

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Thanks for the words of encouragement. It has been a shock as I have always been healthy all my life. It’s true that reading others experiences is encouraging. Take and I hope your husbands condition improves x

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And you too. I’ve no doubt you’ll be stabilised and feeling positive soon. You’ll get through this x

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