I’ve recently been diagnosed with the above. Even BHF states that 1 in 5 die in less than 5 years. My consultant is horrendous, passive aggressive and unhelpful. I have no idea what my prognosis is. I have had 1 failed cardioversion (electrocution) and am on the long waiting list for a second. The consultant says that I have to “accept” my atrial fibrillation if the cardioversion is unsuccessful. Unfortunately, for him - I’m not quite ready for the 7th stage of grief just yet. I have dropped 12 Kilos in the last 2 months, have cut out booze and started swimming. It doesn’t change the fact I’m scared to death! 💀
Does anyone have experience of living with this condition or of treating it or of prognosis in relation to it?
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BusterMac
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Even BHF states that 1 in 5 die in less than 5 years.
That is just figures it doesn't say that the majority who do die are possible 75 years old or even older. How do you feel is what matters not what someone else may say.
I just need to say I will be 76 this year after reading back " or even older " You have to overcome your fears and get on with life as none of us know what's around the corner.
Advising someone "to get on eiwht life" does not really addres the anxiety or terror that these conditions can bring to people like us... a little more empathy and support may help.
I have had a Heart Attack at 34 and I have had bypass surgery in 2015, Stents in 2018 further stents in 2022. I have Moderate to Severe Heart Failure. A 100% blocked Right Coronary Artery about 25 % of my Heart Muscle does not function and never will So I think I am qualified to say " You have to get on with Life " The alternative never cured anyone.
Im not going to debate but I disagree. Also, you are misquoting me. I said “you can go privately”. In my opinion, it’s a small cost for a second opinion if someone feels they aren’t getting the care they need.
Doctors are extremely reluctant to discuss life expectancy, usually it's only when faced with a patient with less than 12 months to live that they'll engage in a frank discussion.
But don't blame your consultant for being "unhelpful", he's just following the medical guidelines. Look at it from his perspective. A patient may quit work and cash-in their pension on the strength of a prognosis, which in turn could expose the doctor to litigation if that prognosis turns out to be wrong!
The problem with the figures that you've seen is that they're averages based on typical patients with this condition. But the average patient with your diagnosis is about 60 years of age, where as you're 39. And the thing is the biggest single risk factor by a country mile is age. So even though it may be accurate to say this diagnosis implies a life expectancy of X years, that's based on 60 year old patients, not on 39 year olds. Your odds will be better.
I am sorry to hear that you are feeling severe anxiety faced with unhelpful and inadequate health professionals, not least your actual health issue.
I asked to be referred three times before I found a consultant who was a half decent human being. Half decent being the operative phrase, even then I was left with uncertainty and very little information and no support when I went through my surgery. It was very far from a supportive environment.
That's due to all sorts of circumstances beyond our control. It's important to try and inform yourself as far as possible about treatment foor your condition, to be prepared when you know you are going to have an opportunity to speak directly to a consultant and to try and be calm. You're doing all the right things in terms of lifestyle so be upstanding, let no-one tell you anything is your fault, ask to be referred to a different consultant. Research and find out who is your best shot.
Good morning, Firstly I would like to say how sorry I am that you have been diagnosed with DCM. I to was diagnosed 3 months ago and it shocked me. My whole world was turned upside down. I'm 53 years old, healthy active lady. Always worked hard and enjoyed life.
The worst part was having no real answers. Nobody wants to commit to telling you what the future holds. You Google and it frightens the life out of you!!
I am now taking entresto and hoping to have my dose increased next week. I also now take bisoprolol and will be starting Eplererone as they also found ventricular tachycardia after heart monitor. So things are moving forward.
I had my first meeting with the Heart failure nurse who was wonderful. I would encourage you to push to see one.
I was private when I had my diagnosis but the cardiologist also worked in the NHS so I now see him on the NHS and I cannot fault him or his team.
If you would like a chat, please feel free to message me.
I know exactly how you are feeling! I didn't sleep for 2 weeks because I thought I wouldn't wake up!
This forum is amazing and I'm very grateful for all the messages I've received.
Keep talking! Don't let it overcome you, there is help honestly. You need a plan put in place so you can focus.
Hi there is a lot of information on the pumping marvelous website and also cardiomyopathy UK , they answer a lot of questions, also the British heart Foundation web site is great as well. I was lucky when diagnosed I had and still have amazing consultants in the golden jubilee in Scotland I can't thank them enough for all the treatment I have. Take care char
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