newly diagnosed HF aged 43

[Mikey8119]

hello all hoping everyone is well and not feeling too bad I’m Michael I was diagnosed with HF in May this year at aged 43 this was a shock ! Currently under cardiology at Blackpool I live in Lytham . Looking to make friends , share management tips for symptoms and support

[Blearyeyed]

Sorry you've had this diagnosis but as you will find from reading the stories and posts here Heart Failure can have very many faces , some much worse than others and can be experienced by people of all ages and fitness levels , although it is a shock no matter when you here you have it.It's great you are here and post as many questions that you have to help you get tips to improve your HF and to get more confident about the future.

It's worth reading through some parts of the Topics section and pinned posts that you will see now on the right hand side of this page.

It's also a good idea to go on the BHF website to learn more about heart failure and heart health , and subscribe to their magazine Heart Matters.

You will see that Heart Failure doesn't need to feel like a life sentence. There are many ways to improve it and your quality of life and activities can get back to normal with your daily treatment routine. You'll also see lots of inspiring stories about people coping with HF so be positive.

Keep posting , keep reading , keep positive, Bee

[Mikey8119 in reply to Blearyeyed]

Thank you so much for your kind reply and tips very much appreciated and I will certainly take this advice

[Lezzers]

Hi Mikey

I'm very sorry that you've had a diagnosis of HF, it's such a shock to be told that, my husband was diagnosed with HF when he was 57, but he'd had a massive heart attack resulting in cardiac arrest when he was 42!

As blearyeyed has already said, HF affects all ages, fitness level etc, some people have mild HF and never have any problems others have very severe HF and are very symptomatic, in the 12 years my husband has had HF hes gone from moderate/severe HF to mild to moderate and back to severe again! But in those 12 years we've had a good lifestyle, holidays abroad etc. hopefully once your medication is optimised you'll be able to get on with normal life with just a few changes.

For information about HF I would recommend having a look at the Pumping Marvellous Foundation website, Pumping Marvellous is the UK's leading patient led HF charity and is endorsed & recommended by cardiologists & HF specialist nurses world wide. You may have already been given some of their leaflets when you were diagnosed.

If you're on Facebook at all I'd also highly recommend you join the Pumping Marvellous foundation - help for hearts support group. The group was set up by the CEO of Pumping Marvellous & all members either have HF or are caring for someone with HF, it's an incredibly well moderated group & you'll find lots of friendly advise & support there.

The other thing to mention is, under NICE guidelines you should be referred to a HF specialist nurse, if they're available in your area. If you haven't already been referred then ask your Dr/cardiologist for a referral. The nurses work with your cardiologist and are invaluable in arranging changes in meds, blood tests, check ups, etc

Good luck

[Mikey8119 in reply to Lezzers]

Hello Lezzers

This is so kind of you and a real message of hope thank you so much for taking the time for such a lovely and helpful reply I will definitely look at the recommendations yes I had my first HF nurse appt last week may I ask in your experience how long was it before they upped the meds to the recommended dosage currently on

Eplereone 25mg

Bisoprolol 2.5

Dapagflazin 10mg

Been on them 6 weeks

Thanks again so much

[Lezzers in reply to Mikey8119]

Hi Mikey

Did I read on another group that your EF is between 25/30? I would think in addition to the meds you're currently taking you'll probably be offered Entresto, which has been a real game changer in the treatment of HF. But it does/can lower your BP quite a bit initially so it's a bit of a softly softly approach.

Unfortunately it's impossible to say how long before you're on the highest dose of meds, some people tolerate meds better than others so it's all very individual but even staying on the lowest dose of meds is optimisation for some people. My husband has never been able to tolerate more than the lowest dosage of meds due to BP issues . However after a telephone appt today with his EP we may try to start slowly increasing his Entresto & possibly reintroduce spirolactone , which he had to stop due to potassium issues, (spirolactone works in the same way as Eplereone) However, I know of absolutely loads of people with HF who are sailing through life with HF, some run marathons, take long haul flights to Bahamas, Thailand, USA, work full time etc & sadly others aren't able to do any of those things! It's very much a rollercoaster ride at times.

Also, it might help to know that at one point my husband's EF went from 30 to 51!! Unfortunately in the last 3years, he's had cancer treatment, COVID, sepsis & then pneumonia all of which have taken its toll on his heart health.

[devonian186]

In your bio you include weight loss and healthy eating.

Do you have a good diet. Is your weight within reasonable norms and do you get reasonable exercise?

These are all factors that, together with the right medications, will help you to live a good life and improve your EF.

[Mikey8119 in reply to devonian186]

Hi there

Diet cholesterol and BP is pretty good

Walk about 15 mins a day

Need to lose abit of timber

[Qualipop]

You're in the right place. Blackpool is the top heart hospital for our area. Blackburn is used for basic stuff but more complex cases all go to Blackpool. I'm not saying yours is complex just that you're lucky to be in that area.

[Mikey8119 in reply to Qualipop]

Yes they’ve been great hope your care has been good

[Qualipop in reply to Mikey8119]

Heart attack treated at Bburn. One further angiogram and one admission for arrhythmia but not heard from them since. I have two referrals in from last October and this January but have been told the wait time is 12 months. Treatment after HA , 6 years ago was wonderful. Good luck.

[Sooz34]

I've also been diagnosed with HFand I was 62 but it was still a shock. When you get on the right meds it can improve things and it's not a death sentence so don't get worried. You'll meet lovely, reassuring folk on here who have all manner of different heart conditions and you'll pick up great tips and advice so hang around 😊

[Mikey8119 in reply to Sooz34]

Hi there you’re so right already been messaged by you and so many other lovely people. I’ve only been here 24 hours and this has had the biggest impact on me in 6 months of fear the positivity is wonderful bless you and all

[Sooz34 in reply to Mikey8119]

I'm so pleased you are reassured. The group here are so knowledgeable about all aspects of heart disorders and when I was first diaagnosed - despite being a lot older than you - it was like I'd been punched in the stomach. The shock of someone saying the words heart failure just frightened me so much. However on a range of different pills and investigations I feel that today I'm more informed, feel at peace with my diagnosis and have a very good cardiologist looking after me. I'm on Entresto and Bisoprolol plus Daplagliflozin at the moment and I'm better now than I have been in a long while. So don't lose your hope and if you need anything just ask..we are all here waiting to help where we can xx

[Pouchielou1972]

Welcome Mikey8119 and I'm sorry to hear about your diagnosis...initially it is the biggest shock and just the name makes you think you are about to keel over at any minute, but as you learn more about HF and your body adjusts to your meds, you realise that this really isn't the case. As the HF team will tell you. .HF isn't the greatest term to use, as it's just that our heart isn't quite pumping at the levels it should. My EF went from 10% to 45/50% 9 months after my diagnosis at 49 years old and luckily I have no symptoms currently. It's like I've rediscovered life again. I'm back weight lifting and doing things I would never have had the courage to do before due to my fear of heights and the sea. I'm on similar meds to yourself. I also have an ICD (defibrillator/pacemaker) as a precaution. Life really isn't over...as my HF nurse said, go live your life as normal...it's a new normal granted, but I'm going for it! Wishing you all the best. We're all hear to support you anytime 🤗

[Mikey8119 in reply to Pouchielou1972]

Thank you so so much for this lovely and inspiring message .

You’ve done amazing well and go you!! Yes I think I’m getting the defib /pacemaker also treatment is so slow with NHS though

May I ask when you say the new norm what did you give up or do differently now

Thank you again x

[Pouchielou1972]

Ahhh...you're getting an ICD too 🙌🏾. As regards to the new norm, it's just that some things I would do previously, I get told I can no longer partake in because of the heart condition and ICD like rollercoasters which I've always loved...or yesterday *I'm currently in Greece on hols), they said I couldn't scuba dive. I don't like to take silly risks, but I knew that I would be perfectly fine on a go-kart and on the water slides despite the warnings written everywhere that people with heart conditions shouldn't take part. I just assess each situation really. Another new normal is not being able to walk through the scanner at the airport. It's a pat down if you have a pacemaker. There are a few things we can't do now, but there's still a hell of a lot we can do and that's what I focus on. Living life as normally as I can 🤗