1st Time Post - Heart Failure - The Future?

[MattyC1968]

Hello, and thank you for taking the time to read my 1st post. In Dec 2019 I was a fit 51yo doing regular exercise (1 mile swim daily) when I suffered a Sudden Cardiac Arrest. I was saved by my wife doing excellent CPR and then receiving a “defib shock” from the paramedics. After 3 wks in hospital, blood clots, then further tests, then Cardiac Rehab in Feb/Mar, I was diagnosed with severe LVSD Heart Failure with reduced EF (27%). I take Atrovastatin (80mg), Bisoprolol (2.5mg), Clopidogrel (75mg), Eplerenone (25mg), Lansoprazole (15mg), Ramipril (5.0mg) and Warfarin due to initial blood clot in left ventricle. I was then fitted with an ICD in June. I am currently well, no symptoms, no breathlessness, no fluid retention etc, but scare myself silly if I google anything to do with Heart Failure. I am staying positive with excellent family support, and exercising well (3mile daily walk / 40 min cardio session 3 x a week and bits of light skipping). I am looking for good news stories regarding the future if people have found themselves in a similar situation but are still going strong years later. Any positive stories/comments will be gratefully read and help to keep me and the family looking forward. Thank you.

[Calliope153]

Not quite what you asked for but I hope you find this of interest.

I read this the other day when reading about heart failure - it mentions "decades" which is always encouraging:

"as the legendary Nobel prize-winning pioneer cardiologist Dr. Bernard Lown described this cardiac condition:

“Heart failure is not a disease. It’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible, and the symptoms controlled over decades.”

So the name heart failure does not accurately reflect the current definition of this condition: essentially, when your heart is not pumping blood as well as it should.

You sound like you are doing really well already; exercise and diet are keys to staying healthy. There are lots of people on this forum who live with the same diagnosis and I am sure they will be along shortly to give their inspirational stories. The great thing about this forum is it gives support and you realise you are not alone. Best wishes.

[MattyC1968 in reply to Calliope153]

Thank you for your feedback Calliope153. Greatly appreciated.

[SpiritoftheFloyd]

Hello Matty, welcome to the forum.

I had a heart attack/cardiac arrest in December 2018, had 1 stent fitted, Echo showed that EF was 30% - so heart failure.

I totally understand what you mean about looking up anything about HF online . I spent the first few weeks out of hospital doing the same and was able to scare myself daily with what I was reading. I think the term Failure is a horrible way to describe any condition, I prefer to think of it as Impaired Heart Function

19 months on from the event, I've made all the life style changes, EF is now 40-45% and I feel better than I've felt in years. You sound like you're on the right path already, so that's great. This time last year I was where you are now, and at the time I was really aware of what had happened, and kept on thinking about it, and worrying. I think when I got to the 12 months mark I started to put the demons back in their box, so that now I don't really think about it anymore - I do form time to time but I'm no longer preoccupied with my heart and just get on with my life.

There's a number of people on this forum who have lived full lives with heart failure for a considerable number of years

Good luck for the future.

[MattyC1968 in reply to SpiritoftheFloyd]

Thanks for your story so far. It’s messages like yours that seem to reboot my hope, which I sometimes need occasionally when I have a low moment or a “worry day”. Appreciate you taking the time to read my post and reply. Thank you.

[ahk59]

Hi there

I took heart failure 6 yrs ago, cause of mine was chemotherapy that I had for breast cancer 5 yrs previous.Was in hospital for 3 weeks.Was so bad they referred me for tests to another hospital that specialise in heart transplant.Thankfully they said it wasnt needed.I was so sure I hadn't had long to live and was scared to look anything up on heart failure.Well 6 yrs later here I am living my best life.Do a daily 35 min power walk.Only now and again I get the days when it's as if batteries are out.I was discharged from all cardiac care about 3 hrs ago.meds that I am on are.DIGOXIN, CARVEDIROL, RAMIPRIL, SPIRONALACTON,FUROSIMIDE.WARFARIN

ATORASTATIN All of these combined have had great effect.I have always thought is the way mines developed through chemotherapy better or worse than heart having a fault.Take care my friend the tunnel does get brighter

[MattyC1968 in reply to ahk59]

Firstly, great to know your story and that you are currently doing well. Long may that continue. Thank you for your kind words and encouragement.

[Yasyass]

Nice to hear from someone who has similar symptoms to me except i have stage one hf symptomless my cardio advices a icd which I’m very scared to do as I feel ok so your story has given me encouragement I too google which everyone tells me not to do plz kp is updated on how u do thanks take care

[Sunnie2day in reply to Yasyass]

Yasyass - you keep us updated also - I'm really hoping you decide to go for that ICD when the time is right for you!

[Yasyass in reply to Sunnie2day]

Thank you for your reply as soon as I get apt with cardio I will kp u posted

[MattyC1968 in reply to Yasyass]

Hi Yasyass. Thank you for your comments. Regarding my ICD, due to me surviving a Cardiac Arrest and having a low EF of 27%, I was informed I was at greater risk of having another Cardiac event and therefore “advised” to have one fitted although the final decision was down to me.

Got to be honest, I feel a lot happier having my ICD in place (9 wks in) and it has taken away some anxiety as I go forward. The procedure itself I found to be straightforward and pain free. I did have a lot of bruising which was very colourful, but this was probably a little worse than normal as I am still on Warfrin medication.

Was just advised to be careful for the first 6 wks and no lifting arm above shoulder height to ensure you don’t pull the leads out. You just have to do gentle arm movements so the shoulder doesn’t stiffen up too much, but these exercises are given to you before you leave hospital.

So I would say it’s nothing to get scared about.

Thanks again, hang in there and as always, stay off google!!

[FeetheBookworm]

I was diagnosed with HF 4yrs ago this September, also due to chemotherapy or possibly viral. EF of 17% which is now at 43% (as of Aug last year) and discharged from annual HF Clinic app and bi-annual check with HF nurse to GP care.

This means I see one of the nurses for BP check and usual bloods (about 5 vials!).

I’m also part of an Inherited HF genetic testing clinic at Harefield who have taken overall control. I have an ICD which is checked bi-annually at my local hospital when COVID is not around. April check up is now in Sep. I still get v tired some days and just have to pace myself.

Fiona

[MattyC1968 in reply to FeetheBookworm]

Thank you Fiona, for your reply. Glad to see your EF values increasing and your doing well. Hope the check-up in Sept goes well too.

[Loopylou527]

Hi MattyC1968.

My dad had a stoke two years ago just after he turned 60 and found out he had AF. He was then diagnosed with heart failure. He had to go through months of rehabilitation with learning to read, write and move again as well as not understanding at the time what HF meant. At times he was really down and depressed. We all had our dark days in the beginning trying to come to terms with it.

However, two years on and he is a different person (not just because his brain functions in a different way now). He has recovered well from his stroke and the medication he is on seems to have his HF under control. He exercises everyday, eats healthier and no longer works. He was a truck driver and if this hadn't have happened he would still be working 12 hour days and may have had a stroke/heart attack at the wheel. He has had a second chance and is living a better life than he did before.

In May he had a follow up appointment at the hospital with his cardiologist who advised they were happy with how all his latest tests, scans, etc. looked and are happy to see him in 12 months.

At first it is all doom and gloom but better days do come, you just have to take it a day at a time.

[MattyC1968 in reply to Loopylou527]

Fantastic to know your dad recovered ok and is currently well. Thank you for sharing your story with me.

[Fred1954]

If you are managing to exercise well without symptoms of breathlessness and you are not suffering from fluid retention, then I would suggest that your ICD and drug regime are working fine for you. Well done and stick with it!

[MattyC1968 in reply to Fred1954]

Hi Fred1954. Thank you for your comments. Fingers crossed, long may it continue.

[Hidden]

Hi Matty, and welcome to the community. Some great advice has already been given and there is much cause to be positive. You’re doing remarkably well with your exercise, so definitely keep it up!

My story is very similar to yours. In March 2019 I was a very fit 46 year old ex-career soldier. One morning during a business trip to Texas I suffered a massive HA (no CA, but 100% LAD blockage). I left the hospital with a single stent, a big scar on my heart, an EF of 34% and a big bag of drugs. Curiously, the words ‘heart failure’ were not uttered by any of the medics until a couple of months later.

Like you, Dr Google scared the wits out of me for a while but I soon focused my attention on how I actually feel, as well as partnering with my cardiologist on optimising my treatment. I’m happy to say that right now I’m feeling great - running 5k (steadily!) every other day and regular but sensible resistance training.

I’ve also made some small but sensible lifestyle shifts - limiting alcohol and ‘bad’ food, but nothing too drastic like going full vegan. It’s a balance and highly personal, and I feel that too radical a change for some (me) would compound any sense of mourning for the ‘old you’.

All the best, J

[MattyC1968 in reply to Hidden]

Great read Jonah72, thank you. Our stories seem quite similar, although you seem to be a year or so ahead of me. Will be glad to keep up to date with your progress and how you're getting along. Thanks for your reply, as always, it's reassuring to know we're never alone on this journey.

[MarieMoz]

Firstly thank you for your post. This is my first time on here and i can relate to much of what you have said. Im 47 dont drink, never smoked normally fit and well and 12th December 2020 i had 100% blockage LAD and stent fitted. I was then told my heart function was less than 30% and i would be treat by heart failure team in community and sent home with the big bag of meds. I have managed healthcare organisation and worked 16 hour days keeping everyone safe and this was my reward.

Im only 5 weeks down line and hoping that there is improvement in function at scan in few weeks. Im tired and get breathless but most of all im positive ❤

[MattyC1968 in reply to MarieMoz]

Thank you for taking the time to read and then reply to my post. I thought it may help you in your recovery if I gave you an update on myself, 12 months down the line of my own recovery.I am generally feeling well and have returned to full time employment from September 2020, and must say my employer has been excellent with me, initially started on a phased return of 2 days a week until I built up to full time hours.

I am “lucky” I guess that I currently have no symptoms of HF and can exercise well.

I now do a 5mile walk at least 3 times a week and do a 45 min cardio & skipping programme, also 3 times a week. I have also been swimming 1 mile twice a week (when open).

Exercise is the area which has caused most discussion. My cardio-rehab team were cautious about the swimming, due to the water pressure on the heart, and told me to think of alternatives. I have been a competitive swimmer all my life so was reluctant to totally stop this form of exercise. They also really encouraged the cardio rehab programme I was doing.

My Heart Failure team and Cardiologist, on the other hand, encouraged me to go swimming, but to slow down on the Cardio Rehab programme!! (I was initially doing it daily).

Confused, after further discussions with all parties, I decided to do a bit of everything, in a moderate way and nothing at an excessive pace, which has resulted in the walking/swimming/cardio programme I now do, and I just “listen to my body” to know how I’m feeling.

My medication has changed slightly. I was encouraged by the HF team to move from Ramipril onto Entresto, as they said this may help my heart function and EF. I have moved through the doses and am now on the top level dose of Entresto, which I have been on for 2 months now.

I will only know if this is working when I have my Echocardiogram, which I am having on 03 Feb 2021.

Please don’t get too downhearted if you don’t see any improvement in your next scan in a few weeks. I have been informed that the heart needs to settle down after any major problem, and you also need to allow time for all your meds to work. This is why my HF team would only put me forward for an Echocardiogram after 12 months of their care. I will update you on my results in February, but I am hoping to see an improvement on my 27% EF.

My ICD has helped me mentally, knowing I have a little guardian angel just in case. The Cardiologists have told me I am classed as “low risk” for another Cardiac Arrest, but I do take comfort knowing it is there to protect me. I now don’t even realise it’s there and it is constantly monitored by the hospital via a device at my bedside. I would advise anyone to have one if it is recommended by their Consultant. The main downside is not being able to drive for a period of time.

It is also worth remembering that you, like me, had a 100% blockage of your LAD. This is often referred to as a “Widowmaker” due to many people not surviving such a problem. In my case it led to Cardiac Arrest, which only 8% of people survive.

Therefore, I do feel lucky that I can still make memories with my loved ones, something many others are no longer able to do.

I hope the above helps, and if you ever need info on something or you think I may be able to help or advise, then please, don’t hesitate, send me a message.

Remember, the future is bright.

Matty.