Congenital heart failure in your 40s

[jonpaul77]

Hi is there anyone out there 40 diognosed with heart failure only just picked who have lived 40 +

[Nanasboys]

Hi I found out in April that I have heart failure I'm 61 the way I found out was my feet was really swollen and my friends kept saying phone a ambulance I did and as soon as they seen my feet they said you have heart failure i laughed but it turned out it did I was in hospital for about a week my main doctor was really good and explained everything to me just remember don't miss any of your tablets and you will be ok this might cheer you up I dropped 1 of my tablets and couldn't find it so I phoned my doctor and he said he will give me a prescription for 1 I couldn't believe it a prescription for 1 tablet hope you start to look on the bright side soon

[Bigredhear]

Hi Jonpaul77,

I turned 50 in April and was diagnosed with HF in May after feeling a bit breathless.

It was a shock at the time but I have a much better understanding of it now and with the meds prescribed, some lifestyle changes and regular exercise I am back to feeling normal.

Stay away from Google as there is a lot of misinformation about this condition. Many people live long and normal lives due to the advance in meds and the overall awareness of it.

There is a really good charity called pumping marvellous and they have a Facebook group has been brilliant for me as there are lots of people on it who can give great support and advice.

Good luck and stay positive

[Chris0011]

I just turned 36 on Sunday. Found out I had congenital complete heart block when I was a baby and was fitted with a pacemaker when I was 18 months old. All was good, I lead an extremely active life and after leaving school worked as a fitness instructor. About 5 years ago I was diagnosed with cardiomyopathy with severely impaired left ventricle. They upgraded my pacemaker and I went back to work and was fine up until about a year ago I started getting worsening heart failure symptoms. I've been in and out of hospital since last October, have had to stop working and have now been placed on the routine list for a heart transplant.

[Healthyheart1 in reply to Chris0011]

Good luck with everything Chris0011. Regards Sheena x

[Khonkaen in reply to Chris0011]

Good luck Chris...........

[Lezzers in reply to Chris0011]

I'm really sorry to hear how poorly you've been Chris. Have you heard of the Heart failure charity Pumping Marvellous, they have a closed facebook support group and I know that there are some people in the group that have had or are waiting for transplants,you might want to join the group for support. You have my very best wishes for the future

[Chris0011 in reply to Lezzers]

Thank you, I don't use Facebook or any type of social media apart from Snapchat which I rarely use either to be honest but thank you anyway.

[Mirtle]

I lived 67 years before it was picked up!!

I was having a pre op for a bladder op in March 2018 and after the ECG various people were consulted. I then had an echo and it was confirmed as severe heart failure.

The only symptom I had was slight breathlessness going up hills - I can't remember not having that.

Good luck on your journey!!

[jonpaul77 in reply to Mirtle]

Hi thanks for your advice I was wondering did you struggle through your school days learning

[Mirtle in reply to jonpaul77]

No but I was hopeless during any type of PE lesson in the mornings. I fainted frequently so in the end wasn't expected to join in wholeheartedly!

Other lessons were fine.

Since being on HF meds my concentration has dipped as has my memory.

I found HF very difficult to come to terms with - lots of'why me' and ' why can't I' because I had next to no symptoms. I am lucky having a very supportive HF specialist nurse and my consultant is very much on the ball. I had problems with the doses of Ramipril at first but by increasing it very slowly I have managed to cope with them. Got to 7.5 so only 2.5 to go. That will be done with 2 x 1.25 increases 6 weeks apart. So getting there!

Take care.

[APJH]

Hi, I am 43, recently diagnosed with severe HF. Had my first pm put in 3yrs ago for heart block. Upgraded to a CRT pm due to an EF of 15 about 2.5months ago. To be honest, my heads still in a bit of a spin. I was on top of it after my first pm. This time round it’s been a bit harder. Lifestyle changes, meds and understanding the ‘ new normal’. I guess it just takes time. Have to remind myself that time is what I have been given. I know its crap to receive a diagnosis and have this condition but the alternative is not better. We dodged a bullet when we got the diagnosis.

[jonpaul77 in reply to APJH]

Thanks for that I feel a pm won’t benefit me I’m on top of my meds and changing my lifestyle I lived 40 years unfit overweight my heads not in a good place at mo just trying to come to terms with it

[jonpaul77 in reply to APJH]

Hi thanks for your advice did you struggle in your school days

[jonpaul77 in reply to APJH]

Hi new here I got Ef 25 they want to give me pm and defribalator but said not yet as I want to get fitter I am 42 went in with chest infection when was 40 I was 16 stone said I got severe heart failure left v ef 25 taking 3different meds checking blood pressure every few days changed life style got fitter now weighing 14 stone 2 stone to go I can’t run as I got fused ankle so I power walk speedball training for heart muscle some light weights I feel in good shape since my 20s and feel I will live longer being fitter as my body have adapted to the ef but I still have issues some kind of learning difficulties witch I feel like a bit of a victim . Couldn’t concentrate falling sleep in class rebelling due to ef I’ve always worked up until now to much stress struggle to get back in to it I was a builder