Just been diagnosed with Heart Failure after having phone a heart attack 12 months ago and echo ultrasound last March ( shocked really ) got to have a pacemaker fitted in the very near future.
Thought I was doing well, been through the rehab no problems going the gym 2 to 3 days a week and walking the dog 3 miles a day every day with no problems
Going to have a pacemaker fitted and be referred to a heart failure nurse
Really shocked thought everything was ok
Hi Dave. I have heart failure too. Such a shock when you're diagnosed but it hasn't been anything like the disaster/death sentence I imagined. Almost 8 years on now and I'm still stable. I do get tired/breathless but generally have a good quality of life.
I don't have time to write a proper reply this morning but the replies to this post might help you - healthunlocked.com/bhf/post...
There's loads of people on the forum with heart failure who are happy to answer any questions you might have so do keep posting. All the best x
Thanks Laura
Hi laura can you give me some hope please? Diagnosed with heart failure 4 months ago. Ef gone up from 20 to 30 echo couple of weeks ago. Really struggling to cop don't think I can go on. Thank you for reading this
Every case is different, of course, but I felt hopeless four months post-diagnosis and here I am, still doing well, 8+ years later and feeling mostly positive about what the future holds for me. You've probably been told this already, but googling heart failure will show you lots of outdated information that makes everything sound hopeless. Modern treatments have transformed heart failure and made it often a long (LONG) term condition that can be very successfully managed. It does take a while to get the right treatments at the right doses and you will likely feel extra rubbish while your body learns to tolerate any medication you've been prescribed and chances are you will eventually feel better than you do at the moment. And that initial improvement in your ejection fraction sounds really promising! Do you have someone you can talk to about how you're feeling? I found it really helpful to talk everything through with the psychologist in my heart failure clinic, but I know I was very lucky to have access to that. I'd definitely recommend seeking out similar - it's such a shock to receive that diagnosis and, if you're anything like me, your brain will have gone into overload, worrying about everything and fearing the worst at all times, which is exhausting.
I hope that helps a bit, but probably it will take some time for you to process everything and regain some confidence in your heart. I'm happy to try to answer any questions you might have but I'd definitely recommend talking to the pros when you can. Did you know you can talk to cardiac nurses at the BHF? Number is 0300 330 3311.
There are lots of people around this forum who have been living well with heart failure even longer than me. Do you have any reassurance you could add to this Heartlady1 ?
Good luck!
Thank you laura I am having a CRT-d fitted soon what are these like? Thank you
I love mine - been the only treatment to improve my heart function and symptoms. It takes a while to get used to (physically and psychologically) but after a few months you should be able to forget it's there most of the time. Do you have any specific questions? Happy to answer if so. There are lots of positive posts about devices on this forum, will try to post a link to some of them here in a moment...
healthunlocked.com/bhf/post... You'll see a reply from me on this post about 11 replies down. I've copied lots of links to posts about living with an ICD which you might find helpful to read.
Hi Catlovermo2
Have just seen your post and wanted to offer some further reassurance. I was diagnosed with HF when I was 33... I am now 58 with a CRT D fitted in 2018 and feeling great and carrying out a full time job!
When my HF worsened back in 2017 and my EF went to 31 and I was diagnosed with severe HF it was a big shock and I started to fear the worst.
However since having my device fitted I am feeling better than ever... and a recent check showed my EF rate at 42!! Which is medium\mild HF. All down to this great little device.
I did reevaluate my life when i got my diagnosis.... started to eat healthier... more fish ... and sticking to mainly white meats. I also quite alcohol completely ( and must say I feel fab having done so.. it's easier than you think)
I also looked at my job .. which I recognised was stressful and moved jobs to a more simple role.. its lessmoney but much better health wise. I am also going to ask to go down to a 4 day week when I have been there a year... so I can have more me time... having fun.
I also built up my fitness after my op... initially could only walk about 10 minutes before getting out of breath. I now walk 3 to 5 times a week for 40 minutes which I do easily...and that keeps me fit which in turn definitely helps my heart.
I also have normal life expectancy!!! Which is fabulous.
So please embrace the CRT d device it's like a little miracle... just make sure you do everything they tell you re not stretching or moving your arm too much in the early stages. And definitely take 6 weeks off work... even tho you will feel great... it's worth it in the long run.
If you gave any questions re the op or the device do ask away... that's what we are all here for x
Hi heartlady many thanks for your reply your words are much appreciated. I am still struggling with the diagnosis of hf but you have given me hope. It has been nearly 3 weeks since crt-d fitted when should I start to feel better. Luv xxx
Hi catlovermo2 ... remember you are just getting over an operation ( on your heart!) So you shouldn't expect to be skipping and jumping yet! Be kind to yourself.
After my op i started walking a 10 min walk a day.... and would feel pooped. I asked if it was my heart... they said " no you are just unfit as we had asked you not to do much for about a year before the op"
So I did my 10 minute walk each day 5 times a week... and at the end of the second week I didn't feel tired and was doing ok. So I then upped it be 5 mins every 2 weeks. But at the end of the 2 weeks if I was still tired at that distance I kept at that distance until my body got used to it.
It took me a few months to get to 40 mins and to enjoy it ... and I perhaps could go further, but I am happy that this is enough for me. ( as it's important to do exercise 3 to 5 times a week) rather than a long slog for 1 day a week.
And even now I can sometimes get tired after a busy morning.. if so I have a little cat nap, when I feel like it.
But remember it takes time to build up your fitness levels... it's also worth asking to be referred to rehab as they can give you exercise and encouragement... and I found it really helpful to talk through things with them... and it stopped me pushing myself too hard early on... which I am now dealing the benefits of.
All the very best in your recovery... eat well.. exercise often.. and live well x
Hi heartlady thank you for your reply. You mention you now have a normal life span. Is this because you have a CRT-d fitted? Many thanks
Hi heartlady thank you so much for taking time to reply to me so appreciated. You mention now having a normal lifespan is this due to having a CRT-d fitted? XXX
Hi.... yes my heart is now functioning much better due to the device. And my EF has risen dramatically, due to this increased function.
At the same time I have also put in place other measures to help myself such as my exercise regime ( which the Drs are delighted about as being fit takes pressure off the heart as other muscles take that load)
Also a healthy diet of fish and chicken.. lots of vegetables and salads ( although I sometimes cheat with chocolate)
Becoming teetotal - which I believe has significantly helped ... no more racing heart or feeling groggy even after 1 beer.
I also buy natural honey from a beekeeper and have a teaspoonful daily ( normally spread on toast) after one of the consultants said research had shown that honey protects the heart and can sometimes even help repair a heart. Although not honey from a supermarket... it has to be unprocessed- hence I found a local beekeeper.
Lastly - becoming less stressed.... I changed jobs... and I took up meditation. I do one hour every 2 weeks. It so helps keep my stress levels down.
For me i do believe that the more i can do naturally... the more i am helping myself to lead a normal and good quality of life. And the consultants agree that while the device paces my heart.... all the other changes I have made are really protecting my heart and keeping me well, which in turn helps my heart.
Its not been easy to make some of the changes... and any change to your life does take commitment and time to get used to the change. But I can honestly say I feel better than I have done in years, and the latest results and normal life expectancy outcome has been like a miracle.
After having the device fitted it did take some months to get used to it being there.... recovering from the op... and starting my road to fitness... however 18 months on I am feeling great 😁
I hope that this helps x
Hi Dave,I`ve been living with heart failure and a pacemaker for 10 years.It wasn`t a shock to me as I knew something was very wrong and the pacemaker has given me a better quality of life.I was extremely fit before the heart attacks and although I`ve never regained the same level of fitness I do pretty good.Since joining this forum I`ve realized I`m one of the lucky ones,I`m not in pain,I`m not stressed and there`s not much chance of another heart attack so I`m sure you`ll be fine.Don`t push yourself too far just to prove you can,just be sensible,keep fit,keep positive and love your pacemaker. Good luck x
Hi
Thanks for your reply it certainly helped me to realise it’s not the end of the world
The news was such a shock I thought I was doing well and be discharged from hospital then to fined I need a pacemaker
Sort of kicked the legs from under me
Hi Dave, I too have heart failure, 3 yrs this month. Big surprise to me as well as I have no history of heart problems, but may have been caused by chemotherapy treatment in my late 40s. I’m the idiot that thought they had a chest infection and kept off going to the GP until I was forced to with my lungs filling up with fluid and had trouble breathing! (And sounded like a frog!!)
It’s quite a learning curve and thank goodness for BHF for this forum, all the info on their site, and funding my HF nurse. Have you seen the video by the cardiologist from York as posted earlier on here - it explains HF far more clearly than I have heard before.
I just try and pace myself - if I’m exhausted I don’t go mad - but I have 2 dogs who must be walked and usually do between 3 - 5 miles a day. Need to go back to the gym though ... which I hate but a necessary evil!! And certainly gets the heart rate going.
Fiona
Hi
Yes thought I was doing well 12 months after heart attack gone through cardio rehab walking the dog twice a day going the gym 3 times a week I even shovelled a ton of sand the other week, so to be told I’ve got HF and need a pacemaker really shocked me
Now I need to take things easier until this thing is fitted
You do need to slow down til you get your pacemaker then you can start to work on your fitness levels.Good luck x
Thank you
I was just like u carrying on walking enjoying life for three years after heart attack then told me ef 35 and might need bypass or pacemaker I nearly fainted but then only gave me meds and said to do a mri now I am confused and waiting to see wh goes on and really scared
I know it’s easier said than done but don’t be scared carry on enjoying your life and take every day as it comes while your worrying about things your not enjoying your time
Good luck hope it works out
Thanks for your reply I will try not worry and hope for best when have mri
Let’s know how you get on
Don’t forget it’s pointless worrying as the saying goes what will be will be
You sound quite fit and getting around so just get on with it
That’s what I’m doing now
Thanks Dave I just started taking rampiril couple days don’t kn if slight back shoulder pain from them or muscle pain it so confusing I suppose start another kind med think eperolenone which I too dread u see I panicked before about tk meds and cause of my heart attack was side affect of med I was takn
I know exactly how u feel four years after heart attack walking breathing normal everything fine cardiologist did scan said ef 31 and severe heart damage and didn’t say when but need icd I am in complete shock I never did heavy work before but the thought of having a icd makes me worried
Hi Yasyass I guy said to me before having my ICD fitted treat it like a guardian angel sitting on your shoulder watching over you and should your heart need a little helping hand he’s sitting there ready willing and able to help. That’s the way I look at it, it’s there as a precautionary with your E F being below 35 the national guidelines recommend the fitting of an ICD ( as far as I know ) just in case your heart needs a helping hand
Good luck
Thank you for your kind reply I’ll try and think of it that way but for the moment I still am waiting see the cardio hopefully he will do another scan see if any improvement
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