AF and Heart failure 33yo

[Jorjb29]

Good afternoon all, I am looking for some support and advice.

My husband aged 33 was very unwell after a COVID infection with a hacking cough and breathlessness. GP provided 3 days of antibiotics for chest infection which did not help. I took him to a&E one evening when he couldn't lay flat and was struggling to breathe, on checking his stats, his HR was 167.

He has been diagnosed with moderately dilated left ventricle with severely impaired systolic function, ejection fraction estimated at 20-25% with left ventricular global hypokinesia with dilated left atrial cavity and mild mitral regurgitation he has had a diagnosis of AF in the past which caused minimal issues, this was addressed in hospitaland is being treated with medication and we are awaiting a cardioversion.

He is now taking Entresto, Dapagliflozin, bisoprolol, digoxin and edoxaban.

He is having an MRI on sunday and a follow up next week.

I am really struggling to understand what this may look like for his future, Google has of course scared me senseless and I am hoping someone on this forum may be able to give me some advice or personal experiences ?

Thank you in advance x

[RufusScamp]

The main advice must be don't use Dr Google. It gives unnecessarily scary misinformation. Entresto certainly helped me from an EF of 20% up to 60%. A chat with the BHF nurses might be the most useful thing you can do.

[iwannabeabear]

Following this as I'm in a very similar place myself. I'm T1 diabetic, have nerve damage in my legs, stomach and eyes and yeah I'm very worried !

[Eddybear in reply to iwannabeabear]

Hi, speaking from experience with an EF going from 35 while in Sinus rhythm down to 22 when in AF I think the most important thing is to get the cardioversion done sooner than later and that should make an enormous difference, it certainly did with me, regards Ted

[Jorjb29 in reply to Eddybear]

Thank you Ted, fingers crossed it happens soon x

[Georgeygoose94]

Hiya, sorry you’re having to go through this, it’s a really scary time and Google doesn’t help!

My situation is similar but not quite the same - I found out nearly a year ago that I had heart failure, secondary to idiopathic dilated cardiomyopathy. I’m 29 and have otherwise not struggled with my health, didn’t find out until I was hospitalised last year. My EF at that point was around 10%!!

This is a good news story I promise - been put on lots of drugs including entresto, diuretics, beta blockers (I don’t have AF but I think the beta blockers help with that) and by November my EF had gone up to 34%, so over tripled. Recovery is slow but I’ve been told that now we have control of it, I’ve got every chance of living a full life expectancy. I hope this is reassuring, the meds really are good these days! You might have ICDs mentioned and one might need fitting, I’ve managed to avoid this so far as it’s dependent on how well you recover, and it’s likely in my future, so be prepared for that conversation maybe. I also had to have a conversation about heart transplants but this is worst case scenario, they just like to get the ball rolling asap just in case, so don’t panic about it if they do!!

Message if you have any questions. My partner went through it all with me and was my absolute rock throughout, this happens to you guys too and it must be so terrifying to see your loved one suffer.

[Alicant in reply to Georgeygoose94]

Thanks for your input to this..felt more comfortable and optimistic after reading ..a good story ( perhaps need more) Have a good day

[Jorjb29 in reply to Georgeygoose94]

What a lovely message and a great outcome, thank you. Its so terrifying and I feel so helpless. I wish you a speedy recovery and thank you for your kind words x

[Georgeygoose94 in reply to Jorjb29]

Just being there for him will mean the whole world, having my partner there was an absolute lifeline for me so you’re not helpless! Best of luck and reach out if you ever need to chat about anything x

[uzininemm]

hello just one other point to bear in mind, 20/25% is not as bad as it sounds, considering a heart considered as 60% plus pumping efficiency is considered as normal and not of concern.

[RailRover]

Google can be helpful, but do bear in mind that a lot of the info there is from private medicine, predominantly in America, whose business it is to get folks through the door. Take it all with a pinch of salt.

[A246]

I had similar diagnosis last year. It is not a death sentence like it used to be. As already discussed by others who have responded to you, there are brilliant medications now. Entresto is a game changer for most of us with heart failure. I am optimally medicated, and have an ICD as precaution which gives me peace of mind. I drive and work full time. I look forward to every day. Please be reassured by us all on here because we are living it. There are people on here who have survived many years with this condition. Most important things I found was to look after myself and adapt to healthier lifestyle. Enjoy life. Best wishes and hope all goes well. .