Heart Failure

[Jamie27]

Hi guys... so I have recently been diagnosed with heart failure and I’m 27!! I have an enlarged heart and have been given meds and referred to the cardiologist and heart failure team... I have made mistakes in life and took a recreational drug.... I haven’t touched this in well over a year.... now I am terrified this has caused this and I’m scared this could be the end... I’m absolutely terrified and just don’t know what to do... help

[MichaelJH Heart Star]

Hello and welcome to the forum! 27 is very young to be diagnosed with heart failure but in recent times I have encountered an eight year old and a thirty year old with heart problems. Heart disease does not respect age, fitness or previous performance.

Yes, there is a possibility that it could be linked to recreational drugs. There were issues with drugs when I was a student in the seventies/early eighties, there still is and there always will be.

However, that is in the past and cannot be undone so we have to look to the future. Definitely no more recreational/illegal drugs and no smoking (hopefully you don't). As regards alcohol be guided by your cardiolgy team - each of us is different with different conditions. Also eat healthily (Mediterranean style diet), and exercise within your abilities and as guided by your team.

Next bit of advice is avoid Dr Google - it is full of out of date advice and, at times, total rubbish. Basically stick to the NHS and BHF websites for information. Life expectancy for people with heart failure has increased markedly in recent years. Obviously I do not know the clinical details but you could have many decades ahead of you. Good luck!

[Jamie27 in reply to MichaelJH]

No I’m a none smoker.... I am absolutely terrified that something server is going to happen like I’m just going to keel over and that’s that... I have far to much to live for! I’ve literally just met the love of my life and have had the best past year with her and now im hit with this.... I’m hoping this is reversible and I get back to my old self but right now I just feel like this is the end... I’ve never felt so down and upset in my life.... I’m so disappointed in myself for even touching the stuff! I’ve been clean for well over a year now and only used the stuff on weekends... I’m so low it’s horrible

[MichaelJH Heart Star in reply to Jamie27]

You really need to talk to the heart failure team for a detailed prognosis as there are various types of heart failure. They may also be able to advise on counseling if you are struggling to cope. You need to think positively - you are still here and your condition will now be monitored and treated as appropriate. When I was a student in 1975 someone I knew took drugs occasionally but then one day took something that cause a heart attack followed by cardiac arrest. They did not survive.

It is probably worth taking the "love of your life" to your appointments as two pairs of ears are better than one and they will not feel you are hiding anything (which can cause stress).

[Jamie27 in reply to MichaelJH]

I haven’t touched anything In well over a year now and would never touch the stuff again.... I am absolutely terrified this is it now... I’ve just spoken with the same doctor as I did yesterday to get abit more insight and basically I am on the boarder of server.... I’m so scared right now...

[MichaelJH Heart Star in reply to Jamie27]

Jamie, I think it might be a good idea for you to ring the BHF nurses to talk about your diagnosis and concerns. They are available Monday to Friday 9am to 5pm. The number to call is 0300 330 3311.

Let us know how you get on or PM if you wish. I have to go out shortly as the dentist is awaiting me! 😨

[Jamie27]

Thank you.... il give them a call

[Dolphin14]

You've gotta just take it one step at a time. You also have to follow the program. Whatever they tell you to do or take or not take you do exactly that.

It's very serious, of course, but can stabilize. If it were going to improve it would take some time.

Science has come so far. There are great medicine out there to help with symptoms.

You've received excellent advice. Talk to the heart failure team. Ask questions. Stay off the internet for sure.

[Jamie27 in reply to Dolphin14]

Yeah the worse thing I have done is search the internet basically saying I could go into cardiac arrest etc and that’s they thing that’s terrifying me.... they have told me it’s borderline server and just to try not to worry so much... I’m hoping I get to see my cardiologist and heart failure team very soon!

[Dolphin14 in reply to Jamie27]

Agree, if it's borderline severe you need to get in sooner rather than later. What were your symptoms? What made you seek medical attention. Just curious. You don't have to answer for privacy reasons I understand that.

[Jamie27 in reply to Dolphin14]

I started getting frequent chest pains.... I did used to take cocaine as a recreational drug if I went out with friends (stupid I know) I was told all my bloods and ecg were fine I’d been in a few times until my heart rate dropped rapidly and was rushed in.... they then referred me to have an ultrasound which has picked up the condition.... I’ve admitted to using drugs before they have told me it’s a possibility it could be from this all though I haven’t touched anything in over a year and half... they are convinced it’s down to a muscular virus...

[Dolphin14 in reply to Jamie27]

You didn't have a heart attack or anything so the muscle is still viable. It's just very weak.

The drugs are behind you. Nothing you can fix about that. But, very brave to share that in and open forum so I commend you. It may help someone else realize the danger of the drug.

Again follow the program they set up for you. Enjoy your new partner and your life. Get more information from reputable sources that gives you the real facts.

Hearing the words are scary. I understand that.

I wish you the best of luck with this.

[Jamie27 in reply to Dolphin14]

Thank you for the support! It’s been very helpful! And yes to every young person out there who is even considering it I would 100% recommend against this.... the stuff is horrendous for your body! It’s been hard to openly admit this as I was terrified at first but people need to see what the possible outcome of this can do.... I’m hoping this isn’t my outcome but I would never touch the stuff again

[Dolphin14 in reply to Jamie27]

Keep us posted on how you do

We have private message if you ever want to reach out

Take care of yourself

[Lezzers]

Hi Jamie, first of all stop panicking!! If you were thought to be in danger you woukd be in hospital. Heart failure caused by an enlarged heart/virus is quite common. My husband has had HF since at least 2012 & he's doing OK. You've been told that you're borderline severe, what do they actually mean by that? The extent of HF is defined by the NYHA scale and this is based on your symptons. How have they diagnosed your HF? And have you been told what your EF is? And lastly what meds are you on?

[Jamie27 in reply to Lezzers]

Erm they didn’t really mention what it meant just that it’s what they said... that’s come from the doctor not the cardiologist or heart failure team.... I just asked how bad it looked on the ultrasound I’ve been put on 2 different beta blockers and a water tablet... I just don’t know what to think at the moment

[Lezzers in reply to Jamie27]

Maybe something to ask your cardiologist? It's a bit naughty of your GP to tell you these things but not give a full explanation! GP's are not HF specialist, you may find your cardiac team will look at diagnosis differently. Many people live normal lifes after HF diagnosis, it's not a death sentence. With lifestyle changes & optimised medication your heart function can improve. My husband was also told he's at risk of cardiac arrest, he's been fitted with an ICD which will shock his heart if does go into CA, this may be an option for you, again something to ask about. The term "heart failure" is such a negative term, its really more a case of your heart just needs help pumping which hopefully the meds will sort out. Again, please don't panic, definately don't Google anything as the info will be completely wrong. Stick with the advice & support here & also try the Pumping Marvellous charity website for info & their closed Facebook group for support & advice. Also, stop beating yourself up about what may or may not have caused it.

[Jamie27 in reply to Lezzers]

Thank you for the support! I really do appreciate all the help!

[Bigredhear]

Hi Jamie

Sorry to hear about your diagnosis, I have also recently been diagnosed with HF and have also taken recreational drugs in the past, this may or may not have contributed to our conditions but its irrelevant now as we will probably never know.

Please dont be hard on yourself as we make many decisions in life and should not be judged by anyone apart from ourselves.

HF is a condition which is manageable and as long as you are prepared to make the right lifestyle changes, take your meds and stay positive then you have every chance of managing this condition.

There are lots of people on here who will listen and give great advice, it's also worth checking out a website called pumping marvellous who have a really good Facebook group which has been very helpful for me.

Our conditions could be genetic, caused by a virus or just bad luck, it's not our fault.

Stay strong, keep fit and healthy, PM me if you want to talk.

[Jamie27 in reply to Bigredhear]

Thank you.... that has helped me settle.... means a lot thank you and I definitely pm you for a chat thanks again

[Jamie27]

So another day and it’s day 2 since my diagnosis.... I’m slowly coming to terms with this but I’ve mentioned to my doctor I keep getting really bad chest pains and numbness in my arm back and shoulder... they keep telling me this is not related to the condition yet all I can do is panic.... I’ve had these pains on and off for over a year and they are still convinced there’s no link.... so should I be getting these pains ?

[thehypnotist]

How's it going now?