Hi,
I had my 5th ablation in May for AF, which has now subsided thankfully. I have now recently been diagnosed with moderate heart failure with a dodgy valve. I have always thought myself as a strong person, but I am just blown away with this and struggling. It has been good for me to put my feelings down here, as I have always been a very positive person, and I don’t want my friends or family to see how much this is affecting me.
Thank you for reading this.
😘
Hi stradey glad your ablation went well. Sorry to hear of your recent diagnosis I don't have any experience in heart failure but I'm sure someone will be along soon to help. I do have experience in dodgy valves I have bicuspid aortic valve and severe aortic regurgitation and moderate stenosis. Did they say what valve had caused the moderate heart failure? I have been told that I am at risk for heart failure and my left ventricle enlarging because of my valve. Wish you all the best and keep us updated on your heart failure x take care.
Hi, it was my aortic valve that give me moderate Aortic regurgitation. My left ventricle is enlarged and I have Biatrial dilation too. The Atrial Fibrillation has contributed I believe. I have my first face to face with the HF nurse on Friday, so hopefully I well get some answers there too.
Many Thanks for your reply, keep well.
S
Hi there I also just got diognosed with heart failure after years of atrial fibrillation and 3 ablations it was picked up on an echocardiogram then a left and right angiogram.I've been put on a drug called jardiance which is for diabetes but is found to help with heart failure.
No point in worrying about it but you might find this forum good its called pumping marvelous
I'm glad your ablation went well , and I'm very glad that you chose to post here about the way your heart condition is making you feel.You are right these things worry us and we have a whole rollercoaster of emotions and thoughts of " Why Me?" when we try to get to grips with our diagnosis and accept the changes it might cause.
And , of course , most of us initially try to hide the way we are feeling from friends or family because we aren't sure if they will understand and because we don't want them to worry about us.
One thing I did learn made this easier, with my various health conditions , was coming in forums like this to be able to get the words and feelings out with people whom could understand.
The words of support , words that let you know that what you are feeling is normal , and the virtual hugs in return really do make a difference. They make you feel stronger mentally and that helps you cope with the road ahead physically too.
It also gives you the confidence to take the next step and be honest about how you are feeling and what your condition is with family and friends because you know you will get more support.
Just telling people in a simple matter of fact way :
what you have , how it effects you physically , how it's made you feel , and how you might need to change a few things, or ask for help with certain activities , makes a big difference to how you , and your family , cope.
As well as being a practical help and relief to you , it is also helpful to the ones you love .
When they know what's going on they worry less about the "unknowns" and tell you how they feel too.
They help more in the ways that are useful because they know how to help and what to look out for.
This helps you to feel better, gives you peace of mind and helps you to relax because you know you are in control which helps you manage your physical symptoms too.
So , well done for being brave enough to reach out and speak to us .
And, if you ever need help with practical medical tips , or just need to talk to people whom understand how you are feeling there are a gang of Faraway Friends on this site whom will always try to help and listen to you.
Take care , you will get there. Virtual hugs , Bee
Thank you very much for your reply. I live on my first own and I having my son and three teenage grand daughters coming to stay next week, and I have been stressing about tell the girls in an informative way but not negative. It may stop them bickering tho and me being the mediator! That is a positive.
Take Care and wish you well.
Definitely, when people know how their behaviour effects your health they do , usually, try to moderate it and it becomes a lot easier for your to control your Stress and symptoms.The increased practical help and feeling of having a big weight lifted off your shoulders ( especially if you are the person everyone goes to to solve their problems) makes life and coping with your illness so much easier too,
Make sure that they know that when they are visiting you they actually need to be the ones looking after you, mucking in on meals and helping out and don't expect you to be running around looking after them doing the old Mum role.
Sometimes it's hard for us to , to stop doing so much and change our role at first. But. It's an essential new habit to get into and visits are still just as much fun.
Big hugs , Bee
Hi Stradey
It’s nice to see you on here.
Although I can’t help too much, you will slowly learn on here that many have heart failure in particular and go on to live normal lives after their diagnosis as a result of medication and some lifestyle changes.
I hope you find other members’ stories useful to your journey and please feel free to post on here any time. There is always someone available to listen and respond :).
All the best.
Tos
What is a normal life? Im 39 and have hf and do wonder can i reach my 50th 60s, or 70s+. Or do i arrange things in my life now for the last few years. God its tough mentally having this illness. Do people live long with this?
There are some very positive and uplifting stories on here with people who have had heart failure, or still do, and are able to achieve some really inspiring things. I have given you some links below to check out for yourself.
healthunlocked.com/bhf/post...
healthunlocked.com/bhf/post...
healthunlocked.com/bhf/post...
healthunlocked.com/bhf/post...
healthunlocked.com/bhf/post...
I agree, the mental aspect of coping with heart conditions needs to be addressed as well and I can’t imagine that it is easy by any means. You will find other forum members to share your anxieties and worries about your heart failure with, including those in a similar position to you on here. I hope the next time you are struggling with it mentally, you put a post on here so we can all support you where we can.
I don’t know enough about HF but I do know your cardiologist can give you a time frame/future outlook living with this.
All the best.
Tos 
hi. I can sense your anxiety and I feel the same. I’m 52 now and 2 years ago I discovered I had heart problems. I had no idea and honestly believed it was a death sentence. I asked the lead practitioner at the HF clinic how long I had, he replied that if the meds I’m taking work (which they appear to be) then I could have a near normal life. Within that, I’d always be on medication and could expect to have some restriction in my abilities, like I’d never be an Olympic athlete. But, and this is the big thing, I’m still here spending time with my family and planning for the future. My plan is to do as much as I can, while I can. I might have 30 years ahead of me or I might have 2, nobody knows, even those without heart failure. X
There are new drugs now that give you a chance to have a long life don't google heart failure it's information is out of date
Hi Stradey, You seem to have a few things going on at the moment, which can be diificult at the best of times. It's good that the AF is under control so you can concentate on the other matters. It does help, I had Complete Heart Block and AF, so I was fitted with a Pacemaker, which has kept the AF in check for the best part of 10years, more or less forget about it.
I see from your reply to Yumz199725 that you have Moderate Aortic Regurgitation, so it's unlikely that they'd consider intervention unless it becomes severe. It took many years before I moved from moderate to severe before my first AVR.
Then there's the Heart Failure, the good thing is the Medication that they're prescribing these days is improving all the time and I've found them to be so beneficial, along with decent exercise, I'm hopeful my Ejection Fraction has improved.
I'm lucky that I'm generally mentally strong, but, even I have the odd hiccup along the way. I've always found it best to tell people the way it is. It's far better than bottling it up in the long run. My sons have never known any different, the eldest was only 2years old when I had my first OHS. People also learn to pick up on things when you're not 'right'.
Best wishes for Friday.
Thank you so much for replying, the positivity from everyone has really picked my spirits up. My sons know a little, I have just said my electrics and plumbing are a bit off kilter, they have sorted my electrics out. I will face time them after Fridays appointment and tell them about the HF. Both my sons live a distance from me, eldest 300 miles away and youngest 10,000 in New Zealand.
Take Care
S
Thank you very much for your reply. You are right, people have picked up on it as I have quietened down, instead of running here, there and everywhere. When they ask, I tell them why instead of saying “I am fine, just tired”.
Enjoy your day.
I was diagnosed with asymptomatic/ borderline or mild heart failure (they couldn't quite decide which between them) after my third ablation was classed as a fail. I was 47. I was just about to start heart failure meds and was told I'd need a pacemaker at some point then my heart went into NSR in the gap between meds. 1st time been in nsr for 19 years. Been there 8 weeks now. No idea how long it will last but literally taking each day as a bonus. Respite for me and my ticker!I definitely recognise the worries about HF. I'd taken financial advice and felt I'd been forced to plan for a future that might include limited life expectancy and/ or limited life style. Indications suggest this period of NSR might hold back the HF so things are changing for me (for now at least) but the worry of HF was and is very real.
Like others have said, there are more options than there used to be and medication can really help, I'm told, but I'm not dismissing your worries. I hope talking with your family is a positive step for you. Holding it all, by yourself, doesn't help, in my experience. Things can get magnified when held tightly.
Wishing you well.
Hi Stradey, sorry to hear you’ve been diagnosed with mild heart failure.
I’ve been living with heart failure for 20 yrs. There are very good medications out there at the moment to keep us going.
If you’re fortunate enough to be given a heart failure nurse you will be able to direct all your fears and worries to them also, as well as us, and hopefully you will get a better explanation as to why you’re heart isn’t working properly.
Everyone is different so what works for me might not work for you. Some people have different underlying heart conditions which caused their heart failure and if that can be rectified it can be reversed. The important thing is heart failure doesn’t mean instant death, it just mean your heart isn’t functioning properly and the cocktail of medications can keep it working. At least your AF is under control now
Be open with your family, especially your son.
Do keep in touch, and I wish you all the best.
yes i known how you feel but it is good however to let your friends and family be aware. god forbid if anything should happen it would be less of a shock for them. you have taken the first step to join the group good on you so this just shows you are strong and able to talk about your feelings so don't leave your family out in the dark. Talking helps especially with our conditions and mental well being
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