Heart Failure

[Bubble6791]

I'm 42 and just diagnosed with heart failure. I have cardiomyopathy and they think pneumonia I had in January caused it. i am in absolute shock and panic and really concerned as I have 2 young sons. Anyone experienced similar please?

[Calliope153]

Breathe deeply and try to remain calm. Laura Dropstitch will be along soon and she is the best person to talk to. She is young, also has a young child please look her up in the members section if you are still feeling alone and adrift. Sorry I can;t be of more help but there is nothing worse than sitting and waiting for a reply you think won;t appear. There are loads of other members too who will answer your queries. Everyone here very kind and knowledgeable.. Take care.

[Bubble6791 in reply to Calliope153]

Thank you so much for taking the time to answer me x

[Lezzers]

There a foundation charity called Pumping Marvellous for people with heart failure, their family & carers. They also have a closed Facebook group of the same name and it is invaluable for advice & support. My husband had a massive heart attack &cardiac arrest at the age of 42, that was scary enough but then at the age 57 we told he's high risk of sudden death & he has heart failure, that knocked us for 6. It completely overwhelms you to be told something like this but it does get easier and it definitely not a death sentence. Have you been assigned a HF nurse? If not ask for referral, NICE guidelines are all HF patients should be referred if they're available in your area. They are brilliant for sorting out your meds, liasing with GP/cardiologist and for advice etc. Try not to worry too much, once they've optimised your meds, you should be able to live life with near normal life expectancy

[Bubble6791 in reply to Lezzers]

I have been assigned a nurse. She's coming to do a home visit in 3 weeks so I will see her then. Had a long chat with the GP this morning which was reassuring so I feel a bit brighter today. I'm sorry for all your husband has gone through x

[Shar28]

Hello, It’s a huge shock when you’re diagnosed with a condition like this but please don’t despair. As your drug therapy takes effect you should make improvements and other treatment can help. There’s a charity called Cardiomyopathy UK who have a marvellous website and nurse-run helpline. If you haven’t already discovered it it’s well worth a look. My husband has Dilated Cardiomyopathy and we’ve found it really helpful.

There’s lots of support on here and the nurses at BHF too and you may be assigned a nurse by your cardiology department. They don’t just offer “technical” assistance but emotional support too.

All the best for the future. X

[Bubble6791 in reply to Shar28]

Thank you. I feel a lot brighter today and able to face the world a bit more x

[Michaelaxx]

hi... keep calm and try not to worry.. i am 40 years old and i had a heart attack (my heart created a bloodclot inside my heart) when i was 38 and diagnosed with heartfailure and dialated cardiomyopathay... i attend all appointments, have great communication with my heart failure nurse, take my meds and make sure eat healthy with the odd occassional treat and gentle exercise..

the main thing i do is listern to my body , if im tired i rest, but never over to do it.. i even ask for time out at work if i need.

think positive and know we are all here, take care x

[Bubble6791 in reply to Michaelaxx]

Thank you, you have given me more comfort than you know.

[Michaelaxx in reply to Bubble6791]

here if you ever need to chat x

[CRTD]

Hi there, my story is similar to yours although I am older than you. I had a bad virus in January 2017 which led to my Cardiomyopathy and subsequent enlarged heart and heart failure with an ejection fraction in the low 20s. Like you it was a huge shock going to the doctors with what I thought was a lingering severe cough and cold and by April being diagnosed.

At the time I was told that the heart is capable of remodelling over a period of time but it’s ability to do so lessens with age, you have that factor on your side. With the right drugs, Entresto was the life changer for me, and a CRT-d fitted my ejection fraction is now in the 40s and my heart is only slightly enlarged so I no longer have severe impairment, just moderate. Hang on in there, there’s light at the end of the tunnel

[Bubble6791 in reply to CRTD]

I don't know anything about ejection fractions. I think I will learn more when I see the Cardiologist in a few weeks

[Thubrj]

Hi yes my husband diagnosed cardiomyopathy last year similar to you he experienced really bad Chet infection not treated with anti biotic eventually after a long spell prescribed various incorrect anti biotics he had chest pains short hospital admission given all the usual heart drugs scanned and sent home once home symptoms continues he was going to work had a black out driving on motorway luckily he managed to pull over GP sent him home with a promise of Cardiac Dept would telephone him ! 3 days after he had a cardiac arrest at home now has defibrillator and pacemaker in no further problems closely monitored not been back to work but we think soon as he is excersising regularly life changing and a long journey but you can have a normal lifestyle wish you well don’t let the medics ignore you 😖

[FeetheBookworm]

I was diagnosed 2 and a half yrs ago. They think either viral or side effect of chemotherapy treatment 11 yrs previously. I also have an IED and take an assortment of drugs. Since the diagnosis my output has gone from 17% to 23 within 6 months and within 2 yrs to 43% which it still is. I still feel tired but some of that is from the beta blocker. I don’t work any more apart from doing copywriting for the work blog.

I’ve also volunteered to be part of genetic testing at Harefield Hospital. The consultant I saw there explained so clearly and told us everything that was happening. I will be seeing him every 6 months from now on. More regularly than my Heart Failure Nurse!

On that subject do you have a HF nurse? Mine is funded by the BHF and was wonderful when I was first diagnosed and floundering around uncertain about everything.

So be positive - because your health may improve. It won’t be straight away - but if I can, and I’m 20 yrs older than you then you must not give up hope.

[jillofish]

Ejection fraction is basically the amount or fraction of oxygenated blood your heart pumps out. I think the average person is between 50-70% . Mine is 35% at the minute.

[Hidden in reply to jillofish]

Can I just correct this slightly as it’s important. The EF or Ejection Fraction is a measure of the amount of blood ejected by the Left Ventricle of the heart not the heart as a whole. The reason I correct this is that there is both left sided and right sided heart failure and EF refers to the left 😀