Support

[AJ92x]

Hey everyone 👋 newbie to the group here. 3 days ago my dad was diagnosed with LVSD with an EF of <20%. I’m a nurse by background but HF is not something I know much about. I’m not coping with my dad’s diagnosis at all (GP is aware and I’ve referred myself for some counselling). I mean by dad is now home and under the care of myself and my mum but I just can’t seem to get my head around all of the changes; any advise or guidance would be greatly appreciated!

[Hidden]

Dear AJ92x

Hello and welcome.

What a shock for your Dad and the rest of the family, it is a horrible blow when we realise that even our own can become sick and so unwell.

Even worse for you with your nursing background.

So your Dads heart journey begins and I’m afraid that you and mum will have to be supportive passengers for him, for like it already has, you will be affected as well.

And if you love that person how can it not affect you? Impossible but bearable .

You are not alone and hopefully as his journey moves along we can help support you all.

Take care

[AJ92x in reply to Hidden]

Hey Hidden & thanks for the warm welcome. 🙂

It’s been a somewhat hellish week to say the least. I just can’t seem to get my head around it all at the moment and truthfully I’m struggling but I’m doing all I can to remain strong for the rest of my family but in particular my dad.

I’m hoping that further along my dad’s journey there is some light which will guide and support us all. I wouldn’t wish this condition on anyone or their loved ones.

I’ve only been a member of the group for a few days but already I’m feeling slightly reassured that the term ‘heart failure’ does not mean the end - wouldn’t it be nice of this medical term could be rephrased to something a little less.. unsure of the term but brighter maybe?

I’d really appreciate any support I could get right now; please keep my dad and my family in your prayers.

Thanks again!

x

[Hidden in reply to AJ92x]

That is no problem with the prayers for you all.

There is a big stirring on this forum for a change in the Failure in the heart failure title, for all it means is that your heart is not working to the text book 100%.

This is not to distract from the level that your Dad heart { or mine } is.

But as time ticks on all that will become clear and the treatment will be sorted out.

I’m sorry that you are finding it so hard { understandably so } but you must stay as strong as possible.

I genuinely hope that we can be of help to you.

Take care

[AJ92x in reply to Hidden]

Hidden thanks for your kind words. 🙂

I’m currently seeking support from counselling for abit of extra support which I’m hoping helps.

I can honestly say that the ‘british heart foundation’ has been an absolute godsend to me since my dad’s admission to hospital and diagnosis.

Thanks again for your kind words!

x

[Hidden]

Another site that maybe of help to you all is pumpingmarvellous.org It has { like this site } many helpful things.

Take care

[Prada47]

Some things you need to get your head around is 55% E F is actually approx 100% of your Heart Working Full On Normally. Cardiologists tend to go by how you feel rather than numbers, a good guide is the NYHA guide to Heart Failure Clasification it's a simple 1 to 4 classification and I know my Heart Failure Nurse is really quite keen on it !!!As for some of the Bull S*** surrounding life expectancy of 5 years this is probably correct if you are say over 80/85 years old when diagnosed and in poor health generally.

My Heart Nurse told me when I asked about life expectancy and I am 74 " there is every chance something else will get you long before heart failure does "

As for Heart Failure if I am not talking to someone who understands what it is, I just say I have a Wonky Heart and leave it at that. One other thing you need to know is that Cardiology try to get you onto the Maxi Medication that you can tolerate before intervention i.e. pacemakers etc.

I am 7 years since diagnosis, and I live a pretty decent life doing what I want to ,OK I get breathless at times which is a pain in the butt and another but is, I still enjoy waking up every morning. If you need help or information this is a pretty good forum for information.

Regards

[AJ92x in reply to Prada47]

Prada47 thanks for the reply. 🙂

I’ve got to admit that researching some things from ‘dr google’ but the absolute fear of god into you so I tend to look at websites such as ‘BHF’ and ‘pumping marvellous’ now which seem to be more helpful.

I completely understand what you mean regarding the medication side of things; my dad is currently taking the starting dose of entresto which I believe is a newly licensed drug and I do know that it needs to be titrated slowly to see how the body will tolerate it. It’s still early days for my dad as he’s still only on day 5 of his new medications for HF so I imagine his body is still adjusting.

I’m so pleased you’re able to live your day to day life as normally as possible, that’s reassuring and believe me when I say that I hope that continues for many years and you get to life the life you deserve! 🙂

Thanks again.

x

[Raznic]

Hi from another newbie (today actually). Sorry to hear about your Dad. After a few years of living with AF and VF and a couple of unsuccesful ablations, I was diagnosed with HF with an EF of <30 in January 2017. In May of that year I was fitted with a CRT pacemaker at Papworth. By that time I was housebound, hardly able to walk more than a few steps and struggling for breath. Very scary. The improvement the pacemaker made was little short of miraculous. I won't be running any marathons but I walk the dog a mile or so a day, no breathlessness, and feel pretty good most of the time at coming up to 76. Just wanted you to know there is much that can be done, and once they decide what's the best course of action for your Dad and get started, I think, even as a nurse, you will be amazed. Your Dad will very much need and appreciate your and the family's support especially during the early stages. I know I did. But there is light at the end of the tunnel. Good luck.

[AJ92x in reply to Raznic]

Raznic hey and a warm welcome to you fellow newbie. 🙂

It’s very early stages of my dad’s HF diagnosis so the unknown appears to be very unsettling for my dad and his tribe (myself and my mum).

I’m sure I will begin to feel more assured as his journey progresses; we’ve already got into the habit of weighing my dad daily, watching his food/fluid intake etc. I just want to wrap my dad in cotton wool but I know that’s no good for him.

I’m sorry to hear of your diagnosis but that fact that you’re feeling brighter following CRT is reassuring and I hope you continue to feel well - my thoughts will be with you.

Thanks for the reply and reassurance. 🙂

Take care of yourself.

x