29 y/o with heart failure

[Georgeygoose94]

Hi, I’m new here and looking for anyone in a similar boat to connect with.

I’m 29 years old and generally have a very busy lifestyle. I’m used to working full time and travel all over the country to visit friends and family as I’ve moved a lot as an adult.

After months of, honestly, hell, in breathlessness, nausea, dizzy spells and chronic insomnia, that my GP dismissed as anxiety countless times, I finally listened to my body tell me it wasn’t ok and I took myself to A&E one Sunday in July. I never could fully explain it and I felt so dramatic but I just had this feeling that I was dying.

This is the best move I’ve ever made and I honestly don’t know if I’d be here now if I hadn’t. 24 hours in A&E, followed by 8 days on a cardio ward later, and I’m diagnosed with heart failure. My EF was at 10%. I had so much fluid built up around my enlarged heart, I lost 1.5 stone of water weight in one week whilst in the hospital. I’m on a cocktail of meds now and I feel physically so much better, I cried when I came home from hospital and could climb the stairs without needing 5 minutes sat on my bed to recover.

The whole experience, however, has left me feeling more alone than I’ve ever felt. I’m so fortunate to have a very supportive partner who has been with me every step of the way, but I spent months where I would go up to 5 days with no sleep, I’d force myself into work, running around a care home praying that I wouldn’t pass out or be sick, struggling to breathe and crying in my office whenever I had five minutes to myself. I’ve experienced some really dark times in my life but I’ve always found it somewhere in me to keep going and this time I couldn’t, and honestly it’s shaken me. I don’t really know what my next steps look like, all the information for HF is generally aimed at people 60 plus, which I’m glad is out there but just doesn’t apply to me. Not sure entirely what I’m looking for here, I’m just scared and struggling to process how traumatic this whole experience has been, and now I feel like everyone around me is moving forwards and I’m being left behind.

Any advice for coping with all this?

[uzininemm]

Hello there, despite the age difference I can relate very much to your symptoms, the stay in hospital and the water removal.

Been told was horrendous and I thought that is it, after speaking to one of the nurses I could see a way forward.

We are all different and I can only tell you what worked for me,

For me I saw it as a second chance as I believe the NHS actually saved my life, unlike you I can't do everything I did before but I do appreciate what I can do (for example when I came out of hospital I could barely walk 50 yards - not the case now). In regards to the walking etc I set myself challenges and found this helped (but it does sound you have gone pass that stage).

In addition, have you had any events in your life previously where you struggled at the time and came through it the otherside. If you did think back as how you dealt with that, I found that really helped me.

I used to be a half empty person but this horrible event changed the way I felt and I now take every day as a bonus and try to be as positive as I can (particularly as there are other potential life threatening health issues I am facing at this moment).

I would ask have you had a look at the pumping marvellous website (the heart failure charity) there is some great stuff on there which may help. Link follows -

pumpingmarvellous.org/

As you said you have seen the difference going to hospital made, when you have a down moment just think of the all the good things in your life now and that decision in going to A and E was the right one.

Good luck.

[Georgeygoose94 in reply to uzininemm]

Hey, thanks so much for your response. I completely agree that, after a situation like this, every day is a bonus. My stamina needs building back after everything and I think setting goals is probably the best thing to do, so thank you for the advice!

[Anon2023]

hi. I am so sorry that you are going through this and I can completely relate to what you are saying. I was diagnosed with HF last year aged 51. It came completely out of the blue, I thought my palpitations were due to the menopause. The doc thought I had a chest infection, nobody suspected heart problems. I’m older than you and can only imagine what a shock it has been for you. There are people on this forum around your age and I hope they reply soon although the majority of us can relate to what you are going through, irrespective of age. The most important thing is that you are not alone. Lots of people live long and full lives with HF and there are medications that can help. Heart failure is an awful term and most on here would agree that heart inefficiency is more appropriate. Put simply, your heart isn’t functioning as well as it should but it’s not a death sentence. Pumping marvellous is a brilliant website and explains things clearly and quite positively. Most of the research on the internet is years out of date and doesn’t take into account individual circumstances. It can be terrifying reading some of the stuff there so try and stick to reliable sources. This forum is a brilliant resource so don’t be afraid to post if you need help or want to ask questions. As I said before, you’re not on your own. Xxx

[Georgeygoose94 in reply to Anon2023]

Thank you for your reassurance 💜 it’s nice to know I’m not alone in these feelings. I’ve been trying really hard to manage the panic my family/friends have been feeling and putting off the processing part, which is all catching up now my body is a bit better. I just wish there was a bit more information/support when you leave hospital!!

[Cherrelleford]

Hey I'm 36, I was in exactly the same position as you. My doctor told me I had a stomach bug. My body swelled up loads so call 111 and they sent a ambulance. I spent 10 day on cardiac care ward. No end of being poked and prodded. I was diagnosed with dilated cardiomyopathy with an EF of 10%. I now have an ICD fitted and a cocktail of medication. I have good and bad days, my kids keep me going and I too have a supportive partner. I am having an ablation on Wednesday to try and help too. Best advice I can give is take it easy, on the bad days just rest and on good days do what your body allows. If you have a community heart nurse, contact them as they are super supportive. I've been living with this for 2.5years now, I've not worked since as advised not to buy my consultant. It can be hard to keep positive but you are not alone and everyone in this group are super helpful and friendly. Hope this helps a little x

[Pouchielou1972]

Hi Georgeygoose94 . Reading your message is like I'm writing about my life...it literally mirrors it. I've just turned 50, I've always Weight trained 4 days a week and keep fit and healthy til I started experiencing breathlessness with the slightest movement...even showering I had to take a break halfway through and no sleep for weeks on end. Doing the school run totally wiped me out. I was running on absolute empty. Goodness knows how I still managed to work on top of all this. The doctor said it was silent reflux and put me on meds for that which I went months on, yet my symptoms got worse. I ended up in A&E after a particularly bad episode of struggling to breathe. They did an ecg and a chest x-ray, said my heart was slightly enlarged, but nothing to worry about and said it was anxiety and sent me home. I had also noticed that I seemed to have put on a hell of a lot of weight mysteriously on my lower body in a couple of days which didn't make sense, little did I know at the time was excess fluid because my lungs were full of it. Tupicsl symptoms of heart failure that the hospital missed I would later find out. I carried on at home struggling on with the symptoms for a few more weeks until one night I experienced another particularly bad episode of gasping for breath. .y husband forced me to go to A&E again as I was reluctant to go for fear of being told it was anxiety again.This time though they spotted the symptoms and moved very quickly with treatment. I also lost over a stone in a week being on firstly a Furosemide drip, then the tablet form. Being told I had severe heart failure and an EF of 10% was a lot to get my head around having always been fit and healthy. I had to have a defibrillator/pacemaker fitted and am probably on the same cocktail of drugs as yourself. This all happened in Oct 2022 and I'm pleased to say, my EF is now 53% and I'm back feeling like my old self, back Weight training and doing everything I used to. It took me a while to get my head around this all and why it happened to me, which they initially thought was hereditary, but it now seems it was something else. Yes, it's annoying that I have this piece of metal in me and on meds for the rest of my life, but as the doctor told me, you are one of the lucky ones who actually had symptoms to warn that something wasn't right, so they could help me. Lots of others unfortunately weren't so lucky. I'm so grateful that my little girl still has her mummy 💕

I know it feels like your world is ending right now, believe me, I felt that too, but just stick with it taking your meds etc and you will come out the other side.

Wishing you all the best x

[Larneybuds]

Good morning....try to get the two words 'heart failure ' out of your mind for a start. Most people on the forum will agree that the words need to be changed. It will have been a real shock for you being diagnosed and I am sure that younger people on here will be very supportive, as will everyone else . Have you had your rehab program discussed as if you haven't already been on it, you will find it an immense help, so if that hasn't happened yet, ask your GP or cardio team about getting it sorted for you. Things have changed a lot this last few years with regard to heart matters and I agree with another members comment about outdated information. With new medications, diet and positive lifestyle changes, along with direction and support, life can be pretty much normal.....it will be a new normal for you but you need to try to put all the scary stuff behind you. Daily exercise is a real benefit and the rehab team will tell you what you are able to do and the experience I think, will make you feel more positive. Some of the medications you take, along with exercise can drastically change your EF for the better as i am sure many people on here will tell you.

I hope you find the support from people on the forum helpful. Though I know hearing from younger people will be very beneficial for you, recovery, coping and dealing with things after a heart diagnosis is much the same for all of us.

Pumping marvellous and British heart Foundation are great resources for any age group. BHF nurses are always available as a listening ear or for help and advice . Sounds like your partner is very supportive so I am sure that together you can face your new normal in a positive and productive way. All the best to you both and let us know how you get on. X

[DaveTR]

Hi,

I was 30 when I was taken into hospital and diagnosed with “Heart Failure” due to inherited Cardio Myopathy (Enlarged Heart). I am now 53.

Like you I led a busy life-style and worked full time. I travelled with my job, put in long days and nights.

Looking back, in the run up to my first visit to A&E I knew something was wrong but just ignored it.

Work were great and gave me time off to adjust while I started medication. I saw some recovery and I was able to return to work full time.

Like you the experience left me feeling lonely. I felt no one really understood and it took time to come to terms with it. My partner was very supportive too. Sometimes to the point of being annoying. I do have a couple of friends that I talk freely to about it but most I find the conversations awkward so just talk about it on a superficial level.

It is a life changing moment and you will need time to reflect on your lifestyle and see if changes can be made. Make those changes if you can.

Have they given you a cause / name for your type of heart failure?

It’s not the end of the road but you may need to take a different route.

I wish you well!

[Georgeygoose94]

thanks everyone for your kind messages.

My diagnosis was CHF secondary to idiopathic dilated cardiomyopathy, so enlarged and surrounded by fluid. I’ve been given pretty much no advice on diet/exercise, other than to be as active as I possibly can. The fluid shifting made a very quick difference to my abilities and I found myself able to climb the stairs again, but when I left hospital I kept becoming light-headed very quickly when walking around, to the point where I felt like I could pass out. Making sure I stay hydrated and maybe time is making this less frequent and now is just on a bad day now, so there’s definitely some progress. I’m assuming that my EF is better just based on my ability and how I’m feeling but honestly that’s a guess.

I was supposed to have an appointment with the HF nurses 2 weeks after discharge, to increase my meds, but due to such a backlog in the team, I won’t see them till mid-September, over 6 weeks after I should have seen them. This is the first opportunity I’ll have to talk to someone about this since I left hospital at the end of July. I find it so confusing that I had to almost fight to get out of hospital because they wanted me so monitored, but now I’m out there’s pretty much nothing. My GP is negligent and honestly dismissive, so I’m trying to change but it’s hard with the catchment I’m in.

It’s good to know I’m not alone and I completely relate to this inability to talk to people about it on any more than a superficial level without it getting awkward. I feel like I can see people’s panic and I have to de-escalate and downplay how I feel, but that invalidates my own feelings! But I’m glad I signed up to this forum and I’m looking to see if there’s an in-person support group in my area. I really appreciate all of your kindness and sharing your own experiences with me xx

[Elsabounre]

What a shock at so young an age..stress and other factors can lead to HF..an EF of 10..will not necessarily need to scare you so much..although there may be interventions and medicines that may be in your future..I have personally seen a family member come back from EF 12..she did have to have a ICD implanted but her heart is mow at normal size and EF perfect at 65..so you may have some severe life changes..but you should be well once you get the right treatment in a timely manner..I do not want to put names to your condition as I am not a medical professional..keep strong..think positively and insist on the best care for you soonest

[Hidden]

I do sympathise with you. I have to admit the mental side to any heart diagnosis is incredibly hard. i for one is finding it hard. Iam a little different to you in the fact that I don't have heart failure, yet? See with my congenital issue my right ventrical is impaired. You would think that it is heart failure but its a bit more complexed. My right side of the heart was not formed correctly but it has kept me going for 57 years. However this is where it gets interesting. Heart failure is the wrong word to use really. It really needs to be changed to heart inefficient. Now in my case my ejection fraction is 51%. But that relates to the left side which pumps blood to the whole body. However my right side which is not showing obvious signs of heart failure it is at 21%. Ef. So you would think that's heart failure. But the right side pumps blood to the lungs, so it works less harder than left side. But because my congenital issue has caused the tricuspid valve to leak, the volume does not get all to lungs so my oxygen levels are low. So with this shock of finding this out, which is exactly how you will be be feeling, I do sympathise. But we have to try and take some faith in the fact that the medications that are now available will help. I am on two medications, lisinopril an ace inhibitor, and spironolactone a diuretic. These two medications are to assist my heart to get the most out of what i have. My heart has a fault. Your heart may not have any congenital faults with it so basically it has all the parts in the right place and is structurally OK it just need help to get it back to being efficient. But it is shock and a hard journey. But you will cry you will feel angry, frustrated, you will feel different. You might feel at times lonely. Not able to do the thing your peers can do but it will get there. I am on that journey and trying my best to except.