support for heart failure

[Jonathan280619]

I have been diagnosed with Heart failure in the last week. I’m only 50 and feeling very vulnerable at the moment. My family is great and I have support. I’m interested to see how others are fairing with this. It’s been a shock and welcome any kind of support.

[Blandnab]

Hi Jonathan,I understand exactly how you must be feeling. I'm 57 and was diagnosed with heart failure out of the blue 3 months ago. I was in shock and disbelief as think of myself as fit and healthy and thought heart failure was something that happened to old people. I'm only now starting to come to terms with the diagnosis and having to take medication for the rest of my life. This forum has been a tremendous support to me as I'm sure it will be for you. You will feel better in time.

[Hidden]

while you are waiting for more responses, you might like to put the search term “heart failure” into the search box top left of this page. You should see lots of posts from people like you, with very helpful responses.

[Battl]

hi

I was diagnosed 3yrs ago, given the news and discharged from a weeks hospital on the same day with no information. I feel alone, frightened and thought I would die.

However with help from my GP and pumping marvellous web site I now feel more confident about my diet, medication and exercise- along the way I have had to persist to get various things. For example it took 2yrs to get cardiac rehab course, which gave me so much valuable information. This forum is also part of my daily routine.

Try to avoid Dr Goggle - use BHF and Pumping Marvellous web site and BHF nurse helpline

Slowly my medication was increased and modified to suit me, I included daily exercise and tweaked my diet. There have been a few little ups and downs along the way but with meds, healthy diet and exercise I am enjoying my life. As are so many folk living well with HF. - the name heart failure is long overdue to be changed to heart insufficiency.

[OK10]

Hi. Didn't they tell you the cause of your heart attack? They have to tell you that then ask them what they will do to fix it. It could be your arteries, valves etc. Don't stop until they give you a satisfying answer.

[Aesculus]

I totally understand - I felt very confused, deflated and very very vulnerable when I was diagnosed in late September 2024. But just to echo Battl's comments -

Avoid Dr Google - he is useless at caring and delivers frequent inaccurate diagnosis

Talk to the super BHF nurses

This group is really supportive- and very kind

Finally, 'heart failure' is certainly the wrong term - a silly example, a tractor with one cylinder not working properly is not described as suffering 'engine failure' - so why do we do that to ourselves?

[Qualipop]

A horrible horrible term that should be changed to heart insufficiency. It does not mean it's going to fail, just that it's not working as well as it should. With the correct treatment and lifestyle many people see an improvemement

[glenh798]

Hi Jonathan what is your ejection fraction? I had a pulmonary embolism that caused my heart failure. My ejection fraction was 20 percent! What caused your failure? I read everything possible on this condition. Armed with this information I became the comeback kid! I lost 70 lbs. Started eating healthy foods and exercising very slowly. I also acquired AFib which needed attention. My doctor put me on digoxin and carvedilol (to control heart rate) and entresto (for blood pressure) and xeralto ( for possible blood clots) I tolerated these medications well. I also stopped smoking and my favorite beer!!! ALL OF THIS HAPPENED 8 YEARS AGO !! I now have an ejection fraction of 55-60 percent. You can live a very long and happy life!! Don't be discouraged! You can be the comeback kid! Stay Strong!

[glenh798 in reply to glenh798]

P.s. I am 70 years old now!!

[Jonathan280619 in reply to glenh798]

Thbaks Glen. Your story is just what I needed. My ejection fraction is 35-37%. To read that you can improve it to that level is just amazing. I’ve changed my diet, stopped drinking. Walking. Eating Mediterranean diet and have cut down on the carbs. Working to a calory deficient diet to lose weight and get my BMI down.

[Jonathan280619 in reply to glenh798]

I also have Afib so need to get that sorted and will ask about those meds as I’m not on any of those. Support from NHs is very poor.

They think it was my Afib and blood pressure that caused it but no one has said.