Scared

[AS90]

I’m 42, with two young kids, a wife and a idiotic border collie to support. I have just been diagnosed with heart failure. My echocardiogram shows I have 35% function. I have not seen the heart specialist yet. I’m terrified! Feel like the world is ending. Is it as bad as I fear?

[10gingercats]

Welcome to the group. You will get a lot of support from people here based on their own wide experiences. When are you due to see the cardiologist? Quite quickly I hope for your peace of mind. You need to know more about what may have caused your heart failure and what can be done about it. At such a young age there are questions to be answered.

[AS90 in reply to 10gingercats]

My appointment is in 10 days. Dreading it.

[10gingercats in reply to AS90]

Good to know you will be seen soon. Make a list of questions to ask your cardiologist.If possible take you wife with you. It is often difficult to concentrate on all that is said and especially when the medical jargon may be unfamiliar to you so it is useful if theres an extra pair of ears around to pick up what may excape you.Also, I would ask how the cardiologist can be contacted if only through a secretary.

[Surreychica_1 in reply to AS90]

Dont dread it. Look forward to it and then you will know what treatment you will need. Really the should not use the term "heart failure" you heart is not going to fail. I hope that you get peace of mind after you have seen the cardiologist.

Try to alleviate your anxiety with breathing exercises and mediation. There loads on YouTube.

I wish you the best of luck. Come back and let us know how you get on.

[Hanibil in reply to 10gingercats]

I was diagnosed with heart failure in 2019 with a function of 28% I now have a much improved function of over 40% due I believe to the medication and the fact I have had a CRT-D implant. Easy to say I know but try not to worry. Heart failure isn’t the death sentence it sounds like.

[AS90 in reply to Hanibil]

Thanks.

[AS90]

That makes me feel a bit better thanks.

[uzininemm in reply to AS90]

Yes the word failure sounds terrible, you will not find anyone who would disagree with that.

That wasunexpected is bob on with his explanation.

Mine was diagnosed at 20% just a year ago, and like you it came out of the blue (the cardiologist said I had had a problem for sometime, but i wasn't aware of it)

I am still awaiting the results of my recent heart scan in Feb, but what I can say is that the meds, exercise, diet, ensuring i don't exceed the fluids per day (1.5 litres) I actually feel pretty good considering where I was and can do most of the things what I want to, just listen to your body.

Take a look also at the pumping marvellous website (dedicated charity for heart failure) there is some really good guidance on there, I would ask you to read the 'living well with heart failure 2022 report' in the news section, I could relate this and found it very helpful.

The one thing I would ask about is (if it is not automatically offered) a referral to your local heart rehabilitation team.

[Puffin1963]

AS90 I think we all go through the scary times when we first hear a diagnosis , it's good to come on here and find others who have walked the path you are on and can encourage and reassure - waiting 10 days might seem a long time, so in the meantime write down all those questions, maybe ring the BHF cardiac nurses. Whatever treatment you need you are young and should cope well with it - I'm young for my CHBG but I've tried to think of it as well I'm young and can cope with it better than maybe in 10 years time. Try to focus on enjoying time with your family, rather than worrying, easier said than done! Best wishes to you.

[HumanZoomieMachine]

Hi AS90, I completely understand your fear.

I thought I was getting in Family asmha when i went to the doctors one fateful Monday morning only to be found out in AFib at around 140!

fast forward 3 days after a cardioversion and resulting multi organ failure due to my heart being so weak I was being rushed down to Royal Brompton before any further decline could have well been my demise.

HF is liveable. with my DCM which has been blamed on my Sleep apnea and the oxygen deprivation it was causing each night, however from hovering at single figure ejection fraction/function to now being at 65% at least (last data i had a year ago)

you like me (39 at the time) are still young and there medicines that were not available 10 years ago that i have been on that have made such a difference. theirs all the chance that your body can adapt like mine to be to tolerate any target dose

your life is not over yet, i am so thankful to the NHS for intervening in my life that i never had to regret being stuck in hospital forever or my autistic son seeing me like I was in my local DoCC or having to say goodbye. Im glad to hear you were not in as much danger as I was

as above thing of questions you may want to ask but this condition is getting more and more understood each year.

[AS90 in reply to HumanZoomieMachine]

Thanks. This page has been a big help today.

[Hidden]

Hello

You have had some really positive replies all making sense and encouraging which I could not add to or be as knowledgeable as these lovely members that have replied to you

I do relate to that feeling of been scared though and I hope your replies have helped that fear realising it is not as bad as it sounds

I also wanted to say Hello and hope now you have somewhere to come and talk it will help you like it has helped me and to know you are not alone helps to x

[RufusScamp]

Welcome. Three years ago I was found to have an EF of 20%. I panicked. I felt slightly better when told that 50% or so was ok. With medication, exercise, diet and a pacemaker, it has improved to 60%. It is a problem, but not as bad as you fear. It's worth having a look at the information on the BHF website, or having a chat with the nurses, who have up to date information.Gingercats advice is good.

[GracieOS]

No, it’s not as bad as you fear.

Hi. I was diagnosed with heart failure nearly 4 years ago now, aged 55. My EF was low to mid 30’s. For the last two years my EF has been hovering around 55, which is the bottom of the normal range. I live a pretty much normal life. I do get tired more easily and have to pace myself but otherwise I’m fine. This improvement was achieved via drug treatment and a a few minor lifestyle changes. Lifestyle things where things like limiting caffine and alcohol intake. I already was pretty active as I have three boarder collies to walk 😬. Last year I took an opportunity to retire early and have spent the last 8 months travelling around Europe in a camper van with my husband.

There is definitely life and hope after diagnosis. It may take time to get the drugs right for you. My had to be tinkered with and changed several times. Mainly I’d say, stay hopeful and pace yourself. Learn to rest occasionally, this is something I’m still working on 🙂

Good luck. X

[Classicfan49]

“Heart failure” is a horrible term isn’t it? When I was told I had it it felt like a death sentence. I did panic somewhat and then I did some research and now hang on to two thoughts:1. In other languages it’s expressed differently. Eg in French and Spanish it’s “heart insufficiency” because that’s what it means. Your heart is working less well than it needs to. So, it’s failing to perform correctly - not failing as in about to give up!

2. It’s really a symptom, an indication that something isn’t right and needs attention. Once they know what that is then they should be able to treat it.

Mine is due to a severely leaking valve. I’m told I might have to wait a year to see a cardiologist, which I’m taking to mean it’s not all that urgent.

[Saflower08]

Some sound advice from above. I would also recommend having a look at the “pumping marvellous” heart failure charity. They have a great positive community too. Good luck

[Fullofheart]

Hi,I'm 46. I've had atrial fibrillation since late 20s. I was shocked then to hear that and still keep being told how unusual it is that I was so young. Not always helpful, can make you feel a bit "odd". Or that you somehow brought this on yourself. I've had lots of those thoughts over the years.

I've had 4 procedures that haven't worked and now heading into the territory of being treated for heart failure....as an early (ish) intervention stage...the AF has caused heart inefficiency over the years. I don't have full on heart failure symptoms but some early signs and have reduced EF function, like you. I'm also still shocked and scared even though I've had time to get used to heart stuff. I think that's a natural response.

You've had some really good advice and support in this thread (as have I by reading it, thanks all) and I think talking about it really helps. If it stays in your head it gets bigger in my experience.

The BHF helpline is really good. I have found them really helpful at points in my journey, one of which was translating the results that you have had.

Don't try and deal with this by yourself.

Hope that offers something on top of others contributions.

[Doodlegurl]

Hi. I’ve lived with an EF of 33% for the last 15years (I’m now 58) which never improved but hasn’t stopped me doing anything I’ve wanted to. We’ve had exotic holidays, gone skiing etc but my passion is walking. I’ve done all the highest peaks in the Lake District, Ben Nevis, Snowdon and do a lot of walking in Nortb Yorkshire.

I really understand your feeling of fear as I can still remember the moment I was told that I had HF and thought it was an automatic death sentence and there wasn’t the support available then such as now with groups such as this which I haven’t been a member of for long but looks really informative and good at supporting people.

I’m sure that once you’ve seen your Cardiac Consultant you will feel more optimistic and with the correct treatment will be able to enjoy your family and your dog for a long time to come.

[uzininemm in reply to Doodlegurl]

A big thankyou doodlegurl it was a question that was on my mind walking again in the wilds (one of my past pleasures was walking old railway lines or anything with a bit of history), was one of the things I was looking to hopefully again.

So thank you again for showing it can be done.

[GracieOS in reply to uzininemm]

Hiya, I should of added to my reply I’m a keen hiker too. And heart failure hasn’t stopped me. I’m a bit slower and I need more rest days in between. I’ve just returned from 8 months touring around Europe mainly from one hiking destination to another across Spain, Portugal, Scilly, Italy, France and Switzerland I walked over 800 miles in the 8 months, up mountains, across valleys down ravines. I have good days and not so good days and have had to learn to pace myself but I still do what I want to do. Hopefully you’ll be the same, good luck x.

[uzininemm in reply to GracieOS]

Thanks Gracie, for the additional information and the inspiration. I think it is now in the my head, what if something happens when I am in the back of beyond.

Think i am going to sort a trip to one of my old walks (Monsail trail) which is within an hour. Will see if a mate will go with me just for a bit reassurance (but I won't tell him that

😀)

[GracieOS in reply to uzininemm]

I was too scared to go out walking when I first got my diagnosis. I didn’t go for a while. Then thought this is probably doing me physical and mental harm, not going. I started back by going with someone on shorter walks and in time got back to going out for longer and/or alone. I used to walk my dogs alone often before my diagnosis, I do so again now. Long treks I still do with company, but always did so. I think going out with a mate to get back into it is a good idea. Good luck xx.

[Raffles77]

Good morning, saddened to hear your news. I had a HA last August and so far seem to be recovering okay as back to playing tennis, I am 67. I would suggest you stop being terrified, easy to say I know, and have everything checked out. You have children, a wife and a Collie who would like you to be around for as long as possible so please, summon up your courage and have everything checked. Fear of the unknown is sometimes far worse than reality. It might not be as bad as you think. To finish, my friends father had heart failure and lived to be 96.

[Anon2023]

Hi. Its natural to feel scared when faced with the news of a health problem. I was terrified. I thought my ef of 45% meant I was dying and I didn’t realise that “normal” was only about 50% anyway. Ef can improve and that’s what I focus upon now. There are some lovely people on this forum who will give you good advice and I would encourage you to post if you need help. Make sure that you take someone to your appointment as there will be lots of information to take in. Don’t Google your condition as most of the stuff on the internet won’t apply to you, particularly given your age. It’s natural to feel the way you do at the moment but many people with heart problems live to a ripe old age. Please let us know how you get on.

[bikerider2022]

HI, as people have said, try not to worry (easier said than done). You've been 'picked' up and are now getting to see a professional who will put you back on a good course. I've been in the same situation. You can't see the light at the end of tunnel, but it is there. Also as others have said, jot down some questions and if possible take our wife with you as another pair of ears is invaluable. Just to add, I was 27 when I had my first HA and 35 when I had my 2nd. Now 45.

[irishwife93]

Hi @AS90, I’m so sorry to hear about your diagnosis, but l am glad so many members have been able to offer you a positive perspective on HF! My husband was recently diagnosed with HF after suffering a HA while on our honeymoon, he is just 39. We are only a few weeks into our journey and I can empathise with your situation, my husband and I were both terrified when we received his diagnosis. His EJ was 35% and is now 45% with medication, but @Doodlegurl has proved you can live an active and exciting life without changing that number!

I completely agree with @Anon2023 about googling the condition, it can make you feel 1000 times worse. Although there are many helpful resources that can inform you how to manage HF, the statistics and prognosis are useless as they are based on a different patient demographic and it’s all very individual. I find it much more useful reading about the experiences of real patients, as you find here, who have lived a fulfilling life with their condition. You will be okay, especially with the support of your family.

I wish you the best of luck with your appointment!

[Qualipop]

A very bad pregnancy and eclampsia caused my mum to develop heart failure in her early 20s. Back inthe 1940s/50s there was no treatment at all for it. She lived without treatment to 67. Her only symptoms were breathlessness on gentle hills and being told she must never have a general anaesthetic as her heart wasn't strong enough. In her 60s she had a hip replacement by epidural. I'm at a loss to know why, in later years she still got no treatment but it was something she never mentioned. She had a further pregnancy, again with eclampsia and lost the baby but she lived a normal life, walking and showing her dogs and smoked woodbines!!! The term heart failure shoudl be banned. IT isn't going to s top suddenly, it's just not working at optimum level.

[AS90 in reply to Qualipop]

That is certainly a more positive story. Thanks for sharing. 🙂

[Qualipop in reply to AS90]

YOu have to remember this was years back and there was no treatment when she was diagnosed when pregnant with me ( See it's all my fault LOL). Her sister fared worse and died in childbirth from eclampsia which caused multiple organ failure. I also had it but I was put in a coma for a week to let my heart recover so it did no damage. Nothing will totally cure heart failure but modern treatments can improve it. It's a ridiculous term that terrifies so many people. It should be changed.

[HeartaFlutter]

Hunny I'm sorry you're going through such a hard time. Just wait to see the heart specialists and see what they say, "yes please see at least two", write down your fears, your ?s n ask please don't feel you are "taking" the doctors time! Oh well, its your life, ask all questions, all fears, please do research on ur own, what are options etc. Go in there with knowledge n ask,ask,ask. You have your age as advantage, I just had triple bypass also a shocker. I heard that 95% of the things we worry about not happen. I'm a nurse, I'll b praying for you!