Heart failure

[daveofpensby]

Diagnosed H.F and E.F. Of 34% and waiting for a possible I.C.D to be fitted. My question is personally I feel good I walk the dog about 3 to 4 mile a day go the gym 2 to 3 Days a week doing cardio on the machines and also do some resistance training, must admit I get tired and sometimes out of breath. Is there any body out there in a similar position?

[aika]

Hello daveofpensby, I myself had an EF of 20% , but am able to work out at the gym 5 days a week doing resistent training. As for walking, I walk on the sand at a good pace also 5 days per week. Interesting though, I was never told I had heart failure specifically by my EP, but I also do not understand if an EF of 20% equates to HF. One would think so though, but I am honestly unsure myself.

[daveofpensby in reply to aika]

Hi ails

As far as I’m aware an E F of less than 50%equates to heart failure

H F is a name that covers various conditions of the heart

You sound fairly fit with what you are doing. What I don’t understand is other people similar to ourselves seem to have all sorts of different health problems as a result of H F?

[aika in reply to daveofpensby]

Yes I do agree and have heard many different ailments from others. I am still trying to understand our disease. So far, I guess we are a bit lucky in that we can still be somewhat active....We must be grateful for this..

[daveofpensby in reply to aika]

Yes we must be

My Doctor called me in the other week just for a chat and quick look see ( first time I’ve seen him in about 2 years)

Anyway his parting shot was your doing quite remarkable considering the damage to your heart.

So yes I guess we must be doing fairly good

[SpiritoftheFloyd]

Hi Dave

I had a heart attack and cardiac arrest at the end of December 2018. Echo showed EF of 30% - therefore Heart Failure.

In January/February in bits, completely knackered. By March me and my medicines had called a truce and agreed to live with each other, and I'd started doing cardio rehab.

By May - wizzing through rehab, bought a treadmill and bike for use at home and busy out walking most days. I used Black Horse Hill from Newton up to the monument in West Kirby as my model to see how I was progressing - in March slow and steady, by June walking up the hill a good pace, not even out of breath by the top.

I was discharged from Liverpool Heart and Chest in October, EF is between 40-45%, so borderline HF, EF of under 40% classed as HF, 40-50% borderline, above 50% normal.

People can have heart failure, even though they have a preserved/normal EF, this I understand was why the New York Heart Association back in 1902 came up with the classification system for heart failure, where rather then dwell on the basic EF % they instead looked at how the patient was living with the condition and came up with the class 1 to 4.

I've asked questions and tried to understand this better and the best explanation I've managed to get from the medical folks is that I've done everything I needed to do, stop smoking, cut down on drink, change diet, loose weight, get active and fitter. Beyond that my body has adapted well to the medicines ( a lot pf people spend years tweaking their meds to try and get them right) and as the consultant said, there's probably a bit of luck involved, genetic makeup etc. Before leaving he asked if I had any other questions, and I replied what are my chances of relapse/going downhill, to which he replied that he saw no reason for that, and that I should just keep on with my current lifestyle .

That will do me, I've stopped thinking about it and am not worrying about what might happen in the future. It's just marvellous being able to live a normal active life, people like us are very lucky

Good luck with the ICD

[daveofpensby in reply to SpiritoftheFloyd]

Thanks

By the way I know black horse hill you did well to getting up there without being breathless.

Liverpool have told me just to take things easy and not to exert myself more than I was doing on the cardio extra fit programme until this ICD thing is sorted

[thetidders in reply to daveofpensby]

As someone else from the Wirral (Upton) I think you did very well getting up Black Horse hill, Spirit, some cars struggle at times.

Dave, I had a triple bypass last year so don’t have the same heart problem as you but you sound as if you are doing all you can to keep fit as long as you don’t exert yourself more than Liverpool say. Hope it gets sorted soon.

Jean

[daveofpensby in reply to thetidders]

Thanks

[SpiritoftheFloyd in reply to thetidders]

Hi Jean

ah ah - yes some cars do struggle up the hill. About 6 weeks ago while walking up the hill I actually overtook someone who was cycling and gave up and decided to push their bike up Black Horse Hill!

[Marmitesunny]

Hi, I have HCM and an icd fitted, I walk up to four miles daily and do yog once a week, I am starting to get fatigued more often now, and wonder if this is due to my heart worsening, the muscles has thickened more over the past year, I should understand more as I lost both my dad and brother to the disease, can you tell me what EF is? And what is causing your heart failure?

[daveofpensby in reply to Marmitesunny]

Heart failure due to HA

EF is a measure of blood pumped out by heart

[Marmitesunny in reply to daveofpensby]

Thanks Dave, though I apologise I don’t know what ha is either HCM is hypertrophic Cardiomyopathy x

[daveofpensby in reply to Marmitesunny]

Sorry should explain better

H A is heart attack E F is Ejection Fraction and is a measurement of the volume of blood ejected by the heart on each beat ( this is my understanding of it ) that ejection is measured as a %

A % of 50 to 70 is classed as normal

40 to 50 is borderline Heart Failure below 40 is Heart Failure ( H F )

Apparently your E F can increase it’s seems to be an individual thing

With mine my E F was 41 after my heart attack and 6 months later it had reduced to 34

Hence waiting to go back see cardiologist with view to having I C D fitted to shock my heart if it stops

[Marmitesunny in reply to daveofpensby]

Thank you, I’m still trying to understand my disease, they don’t seem to give much away! I know obviously that I could be here one minute gone the next (sudden death syndrome is a nickname) but. It sure if it’s the disease that’s causing my fatigue..... I can say Having an icd does give a sense of security in that regard, so I hope they get it sorted soon for you 😊

[daveofpensby in reply to Marmitesunny]

Yes it’s strange trying to get your head around it and as you say they don’t give much away. Yes I think an I C D would give me a sense of security

Thanks

[Hanibil]

Diagnosed with heart failure last November, got fitted with a CRT-D May 20th

[Bigbrian in reply to Hanibil]

Hello

I have to get a CRT-D fitted in early January, how has it affected you and how do you feel about it now?

[FeetheBookworm]

I was diagnosed with HF 3 yrs ago with an EF of 17%. It’s now 43%. Had a CRT-D put in 6 months later (no hospital bed available each week for about 3 months. Better now with EF of 43% and on annual apps with my HF consultant and nurse.

Still get very tired and have to pace myself but much better than at initial diagnosis. They think my HF was caused by chemotherapy treatment 11 yrs before diagnosis or else it’s a viral infection.

[daveofpensby in reply to FeetheBookworm]

Glad to hear your E F has gone up I’m a bit like yourself haven’t got the same stamina by early evening starting to feel tired

[Bigbrian in reply to FeetheBookworm]

Hello

I have to get a CRT-D fitted in January, how has yours affected you and how do you feel about it?

[FeetheBookworm in reply to Bigbrian]

It took a long time to heal post surgery as I had an infection and I had to keep going to the hospital to have the dressing changed. Due to reconstructive surgery post treatment for breast cancer on my LH side I had to have it in the RH side. It moves around slightly and I can feel it, but most of the time I wouldn’t know it’s there.

The biggest pain was having a row with a security guard at a concert at Hyde Park who doesn’t believe I can’t go through the security machine despite waiting my card at him! I have no problems at airports, other concert venues, and on every other occasion not at Hyde Park!

I also had to notify DVLA.

I felt if the consultant said it was necessary I should agree and that they wouldn’t be wasting valuable resources putting one in if they didn’t feel it was warranted.

Fiona

[CraftyGirl72]

HF covers so much... I was classed as having severe HF early 2018 but mild by same October.... mostly unmedicated because it destroys me. I've never had a EF result but mine is stress related - broken heart syndrome/takotsubot syndrome.

I run (term used loosely - but thats nothing to do with HF, I was never fit) 5K several times a week on my home treadmill, do Parkrun on Saturday, tried some cycling which kills me, incorporate other exercise programmes including gentle weights and dance class 2 hours a week. I am probably fitter than I've ever been and only feel uncomfortably tired when forced to take heart or High BP medication!

My opinion is keep doing as much as you can, your body will tell you when its enough... learn to respect it!

[daveofpensby in reply to CraftyGirl72]

Fully agree with you there your body will tell you when enough is enough

It’s all about keeping active what ever exercise you do is a bonus

[Petermck1]

Well done Dave for being so positive. I think ICD’s are recommended if your EF is below 35%.

I have had a pacemaker for 10 years (for a conduction issue 2nd degree heart block)and my EF was 39% and picked up on echo when going in for a routine box (battery change). I had no symptoms so a bit of a shock.

Started on medication and had an upgrade to my pacer to a CRT so now have my LV paced as well.

Just had a further echo 3 moths post insertion and has increased to 45-49% so moved me out of the severe to moderate group (I think).

I’ve never had symptoms and like you walk 3-5 miles a day. I feel great now and so lucky.

They tried to pace my bundle of his but it did not work so went with the LV lead. It may be worth exploring if a CRT may improve EF for you but is probably that you have a completely different condition to me.

Either way keep up the exercise and the positivity, it all helps..

[daveofpensby in reply to Petermck1]

Believe me I was in shock last August when they told me I had H F I’d just finished laying a patio thinking everything was good with my heart then they hit me with that news

Go see cardiologist in couple of weeks and hopefully we decide where we go from here

[Yasyass in reply to daveofpensby]

Hope everything goes well for you

[daveofpensby in reply to Yasyass]

Thanks

[Lilypocket]

A big hello to all of you from the Wirral! I now live in France but was born in Chester and lived for many years in Neston. Miss the British sense of humour! Hugs xx

[daveofpensby in reply to Lilypocket]

Yes that’s one thing we’re good at sense of humour From my experience the french have a totally different sense of humour

[Caseyangel]

Hi. I'm the same. However since I've been on my medication my EF has improved. It was 30% and is now about 45%. I can walk on the flat normally but get out of breath and a bit dizzy up hills. Tired but doing better than when I was diagnosed in June 2019. I've had an angiogram which happily didn't show any blockages. Waiting for an cardiac MRI.

Why do you need an ICD

Sorry to hear of your diagnosis but if we listen to the cardiologists it can sometimes improve. Do you have Cardiomyopathy too, I have dilated cardiomyopathy

[daveofpensby in reply to Caseyangel]

Hi Caseyangel

My H F was due to my second heart attack in August 2018 my first was 25 years earlier any way had 2 stents fitted 1 in August and the other six weeks later that was to try and repair damage from first heart attack my H F was 41 % then upon having my next echocardiogram in March 2019 my H F had gone down to 34 % which I wasn’t told about till end of August 2019 ( so no one did anything between March and August just let me get on with it in ignorance in August my cardiologist told me he was passing me over to the department that does all the implants and recommending I have a I C D fitted as a precautionary measure. Apparently if I over exert my self my heart will go into overdrive trying to pump more blood around and there’s a good possibility it will get over excited and stop pumping

[Caseyangel in reply to daveofpensby]

Hi again

Oh that sounds scary. I hope the device works for you, it does sound like you need one I hope it's soon.

I can believe the waiting it's not right really is it? To me that is putting people in danger.

[daveofpensby in reply to Caseyangel]

The waiting is not good but hey ho what do you do you have just got to wait your turn or empty your bank account + and go private

That sounds flippant it’s not really

I can most things I want I don’t particularly get breathless but I do get tired at the end of the day and I sleep like a baby

Hopefully get sorted in next month or so

[Yasyass in reply to Caseyangel]

Hi glad to hear u doin well wh mess r u taking

[daveofpensby in reply to Yasyass]

Thanks

[pablojack]

i have low normal ef and bradycardia with resting heart rate 41bpm. gym 3 times per week and no symptoms whatsoever.

[daveofpensby in reply to pablojack]

That’s good

It just makes me wonder I know everyone’s different but some people like you and I have a low E F with no symptoms yet other people with similar E Fs are suffering

[Bigredhear]

Hi daveofpensby,

I was diagnosed with AF and HF in may this year, I had an EF of around 40% which has now increased to about 45% with the help of meds and lifestyle changes .

I swim twice a week, play golf once and try and get a decent walk in on most days, I generally feel pretty fit and my understanding is that I should do as much exercise as possible without over doing it.

I was in total shock when first diagnosed but feel much more comfortable with it now and to be honest I pretty much do everything I was doing before but have more awareness of my body and more appreciation.

Theres a really good Facebook group called pumping marvellous and I recommend you take a look as there are lots of people on there with our condition who can offer good advice and lots of knowledge.

Good luck with everything and stay positive

[Tinodog]

H Dave

I am 54 and had HA in June my EF was 35 and 3 months later scan showed no worse but no better do ICD was recommended which I had fitted 2 months ago

no issues with ICD and just feels part of me now

I feel really fit and have stopped smoking 6 months ago and changed my diet somewhat albeit not religiously

I have not be diagnosed with HF yet but as lezzers will tell you don’t get hung up on numbers

I am 54 and just look a day at a time as I can’t changed what’s happed but will do the best I can going forward

Good luck and keep in touch

Btw how ld are you

Mark

[Tinodog in reply to Tinodog]

Old

[Gladwyn in reply to Tinodog]

Lol

[daveofpensby in reply to Tinodog]

Me I’ll be 70 in January