Heart failure advice

[Joanneheart88]

Has anyone been diagnosed with severe lvsd ? I'm 33 years old got 3 young children and haven't really been told much about my diagnosal. I ahveva follow up appointment next week where I intend to ask a lot more questions I'm in 6 different meds a day and was so overwhelmed while in hospital I didn't ask much. I keep looking on the internet but just getting more worried the more I read about it. It says my life expectancy is around 5 years I'm only 33.

[honey1958]

Hi JoanneNot sure I can give much advice but wanted to send you big hugs. I think the 5 year life expectancy is just an average but most people with heart failure are alot older than you and have other health conditions so your chances should be much much much better!

You could ask if you can record the follow up appointment as its hard to take it all in x

[Joanneheart88 in reply to honey1958]

Hi honey1958 thank you so much for your reply, I feel a little at ease with someone else's advice so thank you for that. A recording is a good idea il do that at my appointment next week xx

[MDR1]

Hi Joanne the first thing I would say is do not look at the internet. Look at the BHF site or phone one of their nurses. If you were assigned a cardiac nurse give her a call. Mine has been absolutely amazing.I have had heart failure for 2 years now and was told at the time that I can expect many more years, with a good diet and enough exercise.

Do you know what your EF is, and the cause of your heart failure?

I hope you get all your questions answered soon. You will adjust and learn to live with this.

[Joanneheart88 in reply to MDR1]

Hi thank you for your advice and reply sorry I've took so long to answer your questions, my EF at the time was 14% so they told me that was severe. They couldn't tell me the exact cause but they think it could have been childbirth my youngest daughter is 1 now but they think that's when it started. I had my MRI scan last week so waited a while for that and still waiting for my results I'm hoping things have got a little better from my medication. I've been trying to have a good healthy diet and do daily exercise. So fingers crossed

[Putterguy]

Hi Joanne, I too was diagnosed with severe LVSD back in Dec 2020. After been a reasonably fit 66 year old to be told this was devastating. I like you went straight to Dr Google, last thing you want to do! The stats that are on there are way out of date and do take into account people who are a lot older and probably have other conditions which fail way before their hearts would. Heart failure is a terrible term for what we have.I’m now 7 months down the road, I do feel a lot better, it took a while to get my meds somewhere near, probably will change at sometime as medicines move forward.

You are better off speaking to the cardiac team, heart nurse and your GP, BHF have a good helpline so you can speak to someone there. Also this forum will give you some great feed back from people who are in the same boat.

I’m now back walking 5km per day and playing golf again albeit a bit slower.

I suffered dreadfully with anxiety landed back in hospital a couple of times due to anxiety attacks.

There are lots of posts on here from people who have improved their condition and live fairly normal lives.

Speak to your heart team ask them questions, exercise and diet plus meds are key and you listening to what they tell you all helps.

Last bit of advice if you can take someone with you when you discuss as you tend to get distracted when speaking to the team. My wife won’t let me speak to any of them unless she is there as I forget half of what they say.

Also have your questions written down so you don’t forget.

Stay positive and keep off Dr Google!!

Best of luck.

[Hidden]

I know that feeling. But I am 15 years post diagnosis and still going. Write your questions down so you don't forget them in the heat of the moment.

[Qualipop]

First stop using Google immediately. If you do go online you shoud only ever use the NHS website or the BHF. Statistics mean nothing. They cover all sorts of ages and pre existing conditions. Think about it if that data's taken from 100 80 year olds, life expectancy is low. If taken from 100 30 yr olds it would be much higher. The mere title "Heart Failure" is a horrible phrase. It does NOT mean your heart is suddenly going to pack u p. IT means it isn't working as well as it should and that could be bad or very mild. The important thing is yoru ejection fraction ie how much blood it is able to pump. In many c ases that can be increased by medication, a change of diet, losing weight and exercise. My mum was told she had developed heart failure in her 20s after having full blown eclampsia during pregnancy . Back then in the 1950s there was no treatment to speak of . Doctors never mentioned it except to say she shouldn't have an anaesthetic. She wasn't given any medication. She had no problems except getting breathless on hills. She lived to be 69. Write down any questions you may have; tell them how anxious it's made you and if possible take someone with you to listen and help you remember what's said.

[edplayer]

I've been living fairly normally with heart failure (awful name that doesn't capture the essence of the condition for many patients) for at least 10 years, but probably much longer. I have severely imparied LV function. I'm 50 now and expect and hope to have decades more. I agree with the advice already posted: write your questions down as your think of them leading up to the meeting and don't feel embarressed to go through them all one at a time (however silly or difficult some questions might feel to ask) with your cardiologist. Bring some one with you who can just listen if possible, but if not, I recommend writing up notes as soon after the meeting as you can. At my last telephone meeting I recorded the meeting so I could listen again as I always find I miss or forget important details (and I am a very on-the-ball person - its just not possible to take it all in, espically this kind of stuff). I just used an app on my phone and used a different phone in speaker phone mode for the call. At my next in-person meeting I will ask if I can record the meeting. If you ask lots of questions, including the frightening ones you may well find the answers much more re-assuring than you expect. Good luck and whatever happens there are lots of people here and elsewhere (e.g. Cardiomyopathy UK) who can offer support and understanding.

[SLK-14]

Hi there.....I'm new to this site too. I was diagnosed with severe LVSD in March this year...my Ejection Fracture was 25 and Ectopic Beats 18. I'm now on maximum doses of my medication and my Ejection Fracture has increased to 38 and Ectopic Beats down to 7. Please listen to what these people say ion this site they know what they are talking about. I'm still trying to get my head around my diagnosis but these people will give you a whole lot of support. Take care now...

[shopman]

I can only reiterate what others have said about steering clear of Dr Google - for hearts either the NHS or BHF sites give much better info. Because you have been diagnosed with HF then the go to site is Pumping Marvellous who you can also ring for proper advice.

pumpingmarvellous.org/ and it is also a British site.