Are there any others out there who are of a similar age to me - 59, who have been diagnosed with both Dilated Cardiomyopathy & persistent Afib?
Finding it very frustrating having to deal with a few ignorant people who have either one, or the other, but just assume that your symptoms must be no different to theirs.
I have zero tolerance for anyone who assumes they know everything about each of our diagnosis despite not being diagnosed with our particular heart issues, just because they've heard it somewhere.
Why these people have to comment & pretend they know it all is a mystery to me,
because if I know nothing about a particular heart issue, or any other issue, I have enough sense not to pretend that I do.
I'm also sick to death of people who have never suffered the symptoms of heart failure telling those of us who do that it's not as bad as it sounds.
Firstly,
we are all very different with different degrees /stages of heart failure & with different parts of our hearts damaged/affected.
We might also suffer with other comorbidities that affect our health & our heart health symptoms too.
Same with Atrial fibrillation,
it can be persistent, paroxysmal or permanent.
Some are lucky enough to have no symptoms whatsoever with A-fib yet they still choose to have procedures such as cardioversions & ablations because they're worried their afib could eventually become symptomatic or cause them heart damage, where as others feel absolutely awful.
Most who have to undergo heart transplants do so because they have heart failure that doesn't respond to drugs, unfortunately not everyone can tolerate heart drugs.
Whilst we all want to make others, especially those who have been newly diagnosed not worry too much by significantly downplaying a heart failure diagnosis, I think it's also just as important to explain to them that most will probably have to take several drugs for the rest of their lives, & that all drugs have side effects, that used long term, can & do affect other organs, hence why we have to have regular blood tests.
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Butterfly65
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I hear you. I'm sure a lot of downplaying the severity of a HF or Afib diagnosis is coming from a good place of wanting to be reassuring. Anxiety and worrying has the dual effect of putting the heart under more stress and also saps quality of life, so you can understand people trying to put a positive spin on others' diagnoses.
We are all so very different. I saw ASD folk who had severe fatigue, low exercise tolerance, palpitations... I was fine and symptomless. Others' stories can sometimes help inform us, but I'd never want to speculate the other way - that my experience will mean I understand how it's going to go for someone else.
I hope you find some people who are in a similar situation to you and don't presume anything about your circumstances, symptoms or treatment.
I've got to the point that I don't care if they're coming from a good place anymore, I'd just rather them not comment.
I would never dare to presume how anyone else was feeling, even if they had the same diagnosis as mine, & I'd never dare tell them how they should or shouldn't be feeling because how could I possibly know?
Hi I'm 58 like you I've got dilated cardiomyapathy heart failere af had to finish work through it and life is one big struggle with it just doing simple things is one big struggle moved into a bungelow all adapted 😱
Yep, one big horrible never ending struggle that can do without ignorant comments from ignorant people who just can't keep their stupid thoughts to themselves. If they think it's so bloody easy let them have it, they come out with crap such as heart failure isn't a death sentence anymore,
How would they know if they don't have it
I'd call no quality of life living a death sentence.
Had some silly ignorant arrogant moo telling me I should be grateful that I haven't got half of my face missing, or that I don't have cancer. Some people are just so rude & ignorant & they're usually those who have no real heath issues to worry about.
Cardiologist couldn't tell me why I have it. He said it was the chicken & egg scenario when I asked him what came first/ what caused what, but my MRI scan was blurred thanks to A-fib.
Were you diagnosed with both afib & DC at the same time like me?
I'm constantly shattered, are you?
I have my first cardioversion on the 2nd of April but have been told it's unlikely to keep me in NSR for very long.
Have you had a cardioversion & how long did it keep you in NSR?
Having both afib & DC is absolutely debilitating as far as I'm concerned, I have no energy & as the months have rolled on I've become more depressed & angry.
I'm tired of waiting so long for appointments & procedures, tired of taking 7 different meds 3 times a day that seem to zap me of any energy, tired of blood tests, tired of fluid retention & fluid restrictions,
tired of weighing myself every morning & taking my blood pressure 3 times a day.
I'm 59 but feel 109.
The meds lower my blood pressure too much. Top number is always under 90.
I'm not a fan of the A-fib support group either, though there are some good decent people in there I find one or two who are regulars, ignorant & annoying when it comes to other more serious heart issue.
I'd give anything just to have the lone afib without the heart failure, wouldn't you?
Got them both together I've had 3 cardioversions all lasted bout 3 months I'm like you no energy feel tired all time went to doctors with it they said its all part of my condition unfortunately 😂
You didn't get them together because one has to have come before the other but I get that you were diagnosed with them at the same time like me. What was your Ejection Fraction at the beginning & do you know what it is now?
Mine was 23% In early September, after blurred MRI scan in October I was told it was 34%. Not so good considering it should be around 70% ( optimal) I've been on lowest dose of Entresto for almost two months now but haven't noticed any difference in energy levels.
How did you feel when you were back in NSR?
Did it make much of a difference to your energy levels & your symptoms/ breathlessness/ fatigue etc?
That's interesting, I'm praying the cardioversion will put me back into NSR, even if for just a few days to see what a difference it makes to my symptoms.
You said you had three cardioversions but were you ever offered an ablation after your cardioversion? BTW your name makes me laugh, it reminds me of Rooney - only fools & horses.
When you go you need to ask them everything they never really said why i. Couldn't have it done they just said my heart was real weak n didn't want me to go back to work but did on phase return lasted bout 18 months but was struggling so went back on sick 😱😅😂
Bless you, I can tell you prefer not to think too deeply about your health conditions & can see you use humour to cope.
Always so many questions to be asked when we have appointments & procedures but normally not enough time.
I hate having both afib & DCM but also hate it because we can't compare our symptoms to others who have just afib or DCM, plus having A-fib means our hearts are always over worked.
I've cried so much during the past 7 months it's a wonder I've got any fluid left in me.
I'm not crying 'cos I feel sorry for myself though,
I cry because I'm so angry that I have no energy & there's nothing I can do about it.
I've had dcm n hf and af 10 yrs I just go with flow n take everyday as it comes wot will be will be lol my wife worry bout it just keep taking my pills 💊
I don't think I'm ever going to get used to having no energy I'm afraid, I need to have some quality of life.
I need to be physically active, I'm at my happiest when I'm busy, I think most of us are.
I suppose you've got used to it after ten years but we're all so different.
I was told by my cardiologist that it's unlikely I'll remain in NSR for very long so I've been trying to take that on board,
but if it doesn't work & I'm told they couldn't revert me, I think It's gonna devastate me.
Our partners go through it with us but I hate that my husband is having to do so much & still manage a full- time physically demanding job. I feel useless.
I have to rely on my wife alot but you never get used to it i used to have staffies they needed a lot of exercise when I lost him him I got a smaller dog so I take him out for little walks than I'm knackered lol
Hi, I have dilated cardiomyopathy but aged 73. It’s not fun. I am on meds. Had a recent echo which showed 20-25 Ef. What is yours? What meds are you on?
Ef was initially 23% last August/ September. MRI in October 34%. I'm taking 7 drugs. Entresto, furosomide, empagliflozin, digoxin, bisoprolol, Apixaban & another one but can't remember the name of it.
Asked to be taken off bisoprolol because think it may be contributing to extreme fatigue but told I have to wait until after cardioversion.
thanks for that, I will lookup what your meds are for. I am on Entresto 24/26, Rivaroxaban, Spiractin, Amiodarone 100mg. Unfortunately my body doesn’t tolerate drugs well. I came off bisoprolol it was killing me. I had a pacemaker fitted last August, it helped relieve an ache in my upper chest neck, but no effect on Ef. I can do some light housework for say 2 hrs and that’s me for the day, I need to lay down where I’m most comfortable. No reason given me for the condition. I started to have a pain beneath right hand rib, 2 years no diagnosis. Still get it after being up for a time. When ended up in hospital the cardiologist said the pain was likely fluid retention being retained within sheaths which surrounds lungs and liver…. It’s such a shame people with severe heart problems are suffering and isolated at home with no recovery or advice support. I don’t want councilling as I know it would be a ‘crying feast’. I want to see every GP have a hand-held echocardiogram machine so as to assist in detection of problems at an early stage as this is the only procedure to have detected my DC. Would like to see Heart Foundations put money towards this. The salaries portion of these institutions are so high with what measure of performance? Thanks over for now.
empagliflozin, I think that is a new one I tried as they said was helping with heart conditions, I couldn’t tolerate it. We seem to be on similar medications, the Amiodorone could be the other you take. Cardiologist wanted me to double the dose of entresto at night (I take 2 pd) but I couldn’t tolerate it. I wonder should we be exercising but I asked my Dr she just said rest, do you have a hobby, I said painting but can’t do that, do you read, yes is said, well do lots of reading she says. I said I am on the way out, oh no she says you have many years to live, or the like. I have not asked for a life expectancy as I have googled it. If ever something comes along which helps you please relay it, and visa versa. All the best.
I've had afib. And have now dcm caused by myocarditis. Afib fixed by cardioversion. My journey started 9 months ago with myocarditis. The drugs are helping. Ef down to 25%, then 49% now 43%. A rollercoaster. I'm 52. Extremely clean living and otherwise healthy.
The thing I find is that people in my office see me walking and talking. They think I'm OK. I'm not. I'm carrying quite a burden of uncertainty. I think everyday about my situation. I agree with a lot of what you say.
My heart rate is still going over 100 bpm despite taking heart rate control meds.
The more meds I take the lower my blood pressure falls which makes me feel nauseous, weak & dizzy.
Some of my symptoms are visible, as in the oedema, the extreme fatigue, I look tired all of the time, plus facial sweating on the slightest of exertion.
Funny you should mention this because it was one of the comments that annoyed me when I was told I should be grateful that my symptoms were invisible.
According to some of those ignoramouses who have absolutely no idea what heart failure feels like you are absolutely fine though.
It's a nightmare trying to juggle meds with low blood pressure because they're all aimed at lowering high blood pressure but mine has been low from the moment I was in A & E, they kept telling me I had a very high racing irregular heart rate with very low blood pressure & that was before any meds were administered. What about you?
Roughly same as I was , mine was caused by shocks that was delivered after I had a cardiac arrest luckily whilst having a Cardiogram,flat for almost 3 minutes .i had cardioversion it put me back in sinus lasted 18 months and reverted back into Afib exactly 2 years to the day I had C-A I paid private for another cardiovertion 2 weeks ago and I feel brand new again,I hope they get you sorted because believe me I do know how your feeling 👍
I got diagnosed when I was 57 but sure I had it a lot longer as I had been to the doctor but told it was palpitations. I adventualy ended up in hospital and been under the hospital ever since. I had to have a ICD inplanted as I was passing out I’m now 68
I think you're being a bit unkind to be honest. People who respond on this site do it to HELP other people who, in the case of heart failure , are worried that it's automatically a death sentence. These are normally people without experience of the disease that are in many cases, frightened! Most on this site have many other problems just like yourself. Me being one of them. You've taken offence at fellow strugglers who are ONLY trying to be helpful.
What are my assumptions? Who has told you how you should feel and that you are lucky? Is it someone on this site? I don't know who you're criticising except me obviously! I haven't a clue how you feel, apart from the fact that you're extremely frustrated by your perceived or real lack of care, which is no fault of posters on this site, many of whom share your health problems, and who generally only try to give support!
You assumed i'd taken offence for the wrong reason, that is an assumption.
There's a huge difference between supporting another poster with kind words, opposed to telling them how they should feel & how grateful they shoud be.
It would be akin to me having just a-fib without the heart failure, afib that was under control,
but telling someone who'd just suffered a severe heart attack, stroke, or needed OHS, who also had afib, how lucky they were & presume their symptoms were no different to mine.
You see, you did it again with your last sentence. I'm asking you a legitimate question which is to find out who has "upset" you and the answer is that I don't understand and I must be a bit dim for that reason.
You're deflecting. I'm not going to give names on a forum,
in fact I'm certain that would be frowned upon & I'm not about to lose an account I've had for years as It could be viewed as bullying by HU by naming a specific individual in a bad light.
I do find it quite concerning & amusing how PERSONALLY you've taken my post just having a bit of a rant concerning just a few ignorant individuals though.
I am not asking for specific names, just curious if it's an individual on here or a person elsewhere, as I posted to put a point of view that most people who use this site mean nothing but good. I tell you now, I certainly have not taken it personally, but if it amuses you then, so be it. Good luck with your health and enjoy your future!
After reading all comments I'd say it was you who was being unkind. Apparent to anyone who's suffered with any type of heart problem that Butterfly is still struggling physically, mentally & emotionally.
There you go being paranoid again! Possibly why you've taken Butterfly's post so personal & taken it out of context because it's you who perceived it to be directed towards you,
which would explain why you repeatedly asked her to name the individual/ individuals.
I don't dispute for one minute that she is struggling, as most of us are on here. My answer was in regard to her criticising another member for trying to advise/support her. That is the raison d'etre for this site. Now possibly this person went about it the wrong way. Her response to me was that I also didn't know what I was talking about and I "didn't get it".
I do get it! My father in law used to say that there's always someone worse off. That is true but it doesn't alter the fact that when one is in a bad place, they're feeling it, as Butterfly is at the moment. I DO sympathise but it is no fault of other people!
She never named anyone and rightly so. As far as I can tell she was simply venting her annoyance, disapproval and disappointment at a tiny minority who comment when they really shouldn't. You must be old enough to know that online, just as in real life, there are many who never know when to shut up and have no tact or knowledge when it comes to giving others any kind of advice.
Most of us can ignore these comments but anyone who's feeling really poorly, and therefore can't get out do the things they normally do, are obviously going to be highly sensitive compared to those of us who are lucky enough to be able to continue to physically function.
Thankfully others on this thread have had the kindness, sense and compassion to realise that by leaving helpful & understanding replies,
unlike yours that just highlights the points Butterfly has made in her post.
You could have easily scrolled past this post like hundreds of others, but instead you chose to leave unhelpful argumentative comments directed at someone who just needed to vent, and all because you took it personally. Very brave and macho of you.
What the hell are you talking about? Very brave and macho? I haven't asked her once to name anyone. Read my posts again! And, I re-iterate, I have not taken it personally!
My ONLY criticism was in reply to her criticism of some other poster, one of many who try to advise and support, rightly or wrongly.
I have read your replies several times, and I quote; "I do sympathise but it's not the fault of other people"
Please do point me to where the poster has blamed anyone else?
Other Quote of yours;
"I'm asking you a legitimate question which is to find out who has upset you."
"My only criticism was in her reply to her criticism of some other poster, one of many who try to advise & support rightly or wrongly."
So let's get this straight, according to Mitchum's world, rightly or wrongly,
1/ all members of HU forums are permitted to say whatever they like simply because the majority of members are helpful, so therefore we should dismiss & ignore the unhelpfull comments.
2/ We are not allowed to mention/ vent about the unhelpful annoying comments we receive. If we do we are likely to be unfairly attacked.
Being told HF is not a death sentence by anyone who doesn't have it, or has to struggle through with severe debilitating symptoms must be frustrating. No one would dare say the same thing to anyone with cancer, who can go into remission, whereas HF is a progressive disease only controlled with continued use of drugs that come with many side- effects that not everyone can tolerate.
Right! Listen because, to quote a well known phrase, I will say this only once! There have been many, many people coming on here for the first time having been told they have heart failure, and believing, knowing no better, that it is a death sentence. These people in the main are very frightened and other posters spend time trying to put them at some sort of ease. Now, some of these people will develop worse problems, possibly like Butterfly, which is unfortunate. The term Heart Failure is a coverall for basically any problem when the heart isn't working properly, and that is why I and many others try to console the poor people who have had the diagnosis. I hereby apologise on behalf of the many kind people on this site who are ONLY trying to help. You don't need to bother replying by the way!
Deflections from your Quotes won't excuse your past comments. In my opinion you attacked this poor woman as though she'd committed a heinous crime, worse, you seemed to enjoy it. I expect everyone who's ever been told they have heart failure are absolutely terrified, including butterfly,
but just as this woman has attempted to explain that everyone is different, with different symptoms, all having varying degrees of HF, with varying levels of heart damage, Comorbidities and E Fractions, then it should have been clear to all who read her post that we can not simply lump all of those with HF into the same pot, HF is never as simple as that.
By the way, I will stop commenting when I'm ready to stop.
There is too much ignorance surrounding heart conditions. More die of heart related condition than cancer but because many cancer patients lose their hair through chemotherapy & can also be very young, most presume that cancer is more of a death sentence than a heart related condition.
Don't allow the ignorance or the selfishness of others to get you down.
You have enough to deal with. They will just drain you of energy, that in your case you certainly can not afford to be drained of. Concentrate your attention & energy on those who do understand & support you.
Feels more like the end of the world after taking 7 different meds 3 x a day for HF & for Afib for 7 months but you feel worse than you did when first diagnosed.
I have Afib and DCM but I'm older than you. I think I've had Afib for years before it was diagnosed but my DCM was caused by radiotherapy. I'm not suitable for any procedure so it's meds only. I try not to think of what these issues have robbed me of. Apparently my ef is around 50% but I'm breathless all the time and can't do so many things now. I never thought my body would let me down like this
That's how I feel Silvasava so to hear anyone who hasn't suffered with both Heart failure or Afib tell us how we should feel is so very rude & condescending. I'm very sorry to hear that you're unsuitable for any procedures.
We are told that heart failure isn't a death sentence but if we have no quality of life it feels like it is.
Hi, I quite agree i have heart failure and had ablation for atrial fibrilation caused by an enlarged heart due to a infection. I now suffer from PTSD and social anxiety. I hardly ever leave my flat and I have been given a death sentence. I was 46 when i had a svt storm and had a blocked left lad 90%. I was lucky to survive and then 2 years later had the same symptoms heart rate 230 bpm thought I was dead this time in hosital for a mth. I can't take my childen anywhere when they visit and feel i should have died as every day is shite.
Really sorry to hear that you're struggling too. Did the ablation keep you in NSR & did it make much of a difference to your symptoms?
Since my diagnosis I've felt like my life has stopped, although I felt poorly before diagnosis I had more energy back then than I do now.
Now it's just waiting for appointments, procedures & blood tests. My blood pressure drops too low so they decrease my diuretics but then I feel more breathless so must be fluid on lungs.
Hi, I haven't felt normal ever since the ablation. I get pains in my shoulders, I recently had a blood test and I have 32 reading for vit d so i think it's causing me to have muscle aches every morning and night in my right arm. I also struggle walking i get so panicky after about 300 metres that it becomes non enjoyable. I'm not sure if it's my anxiety or physical health that stopks me walking as I didn't leave my flat since December. Every day is a struggle and I get you completely nobody understands.
Your vitamin D is extremely low, low vitamin D can cause us so many problems including anxiety & depression. Has your GP offered to give you a loading dose & vit D prescription?
I take vit D with k2, plus a separate magnesuim gylcinate supplement, my vit D is still low though. You really need to get that sorted, vit D needs to be taken with fat to be well absorbed.
There are lots of articles & videos online advising to purchase D3 with k2 & explain why. Hope it makes you feel a bit better, did they advise on how much you need to take to get your level back up quickly?
I do agree with you, I’ve never had these (and hope I don’t!).
That’s one of the very many reasons why posters and responders need to be so cautious about giving “advice”.
We don’t know peoples’ background family history living conditions …. All those things. So we can say “have you tried this website” or “I suggest you don’t consult Dr Google” . Or “make sure you are well hydrated”. Beyond that we might say “in my circumstances I did so-and-so”.
I remember saying how I was feeling upset and angry after I lost my job at the pharmacy and getting told off for how I was feeling and how I should be grateful for the good things in my life!
Point is when things like that strike at the time it feels like the world has ended doesn't it?
I know from my 59 years of life experience that the type who say these things are normally those who would never be able to cope with the same difficulties that they downplay.
Rant away if it makes you feel better. I was diagnosed 13 years ago with DCM and EF 45/50% which is not extreme. Since then had two stents in LAD elected so no events. I was diagnosed with Afib in 2023 and had an ablation last August. The ablation stopped the Afib but left frequent premature atrial ectopics. I am on Edoxaban, bisoprolol, Ramipril, and Atorvastatin. I walk and exercise almost every day, eat mostly what I want within reason and have been diagnosed with NYHA 1-2 what ever that really means. I am finding it more difficult now to do what I could do even 5 years ago and I do know what the end results of this illness are likely to be. On my last echo in January this year my EF was 51% so somewhat reassuring. Heart failure is a progressive disease so its pointless trying to convince people otherwise as the outcome is always the same. I still carry out my hobbies and honestly at 74yr old male I put it out of my mind. This enables me to carry on with my life and I enjoy it. I would hope people might take the same approach if it is at all possible and remember that people with bypass operations, heart disease etc are all vunerable and honestly trying to be kind. Wishing you well and take care.
I have no problem whatsoever with people trying to be kind but I do strongly object to anyone telling me how I should feel or how lucky I am when they don't have my symptoms, especially when they don't suffer with any debilitating heart condition.
If I could choose between afib & Heart failure I know which one I'd choose but unfortunately I have both.
I'm sure you can understand that.
I'm 59 with an Ef of 34% & for the last 7 months have had no quality of life so obviously don't need anyone telling me how lucky I am or how I should feel.
I understand that HF is a progressive disease but unfortunately so many don't.
Yes I do understand you as I often wonder why people are giving advice on this forum while they are reguarly running 5-10klm runs. However its just their way of coping and I agree it can sound annoying when you and others are having a really bad time of it. And then you get the people with Paroxysmal Afib that get an hours event twice a year and wonder if they should get an ablation or just a pill in the pocket. I think a lot of mildly affected people suffer from event anxiety more so than the effects or symptoms. However they almost all are trying to help in their own way and are doing their best to attempt to put your mind at ease. Anyway the treatment for DCM and afib have come a long way so we can only hope.
I’ve had AF 20years plus (61 now). Went from very fit to heart failure during that time. I have at time been very ill, very depressed, felt no one else understood. This forum & the people on it were so, so supportive & got me through the very scary times. We all respond differently to what we hear, especially when we’re ill. AF on its own to some is debilitating - really I mean not just in their head yet others don’t feel a thing - they both have the same risks.
This support group is the same as texting, emotions cannot be conveyed like the spoken word or face to face. Why not try some mindfulness (doesn’t work for everyone) but it can calm anxiety, lower HR & respiration rate. It channels the anger energy which only makes things worse, into positive energy that helps you, body & mind.
Most people are “ignorant” about others issues, conditions etc because unless you’re touched by it why would you know about how someone feels. Also I think someone mention ASD (autistic spectrum) - sometimes find it easy to understand the textbook diagnosis but may have no emotional connection of how it makes someone feel ( even if you explain 10 times.
Mindfulness can make you more accepting of response/actions given/receive. We have to try to think, can I change myself - if so how & go for it, if not find a way to accept the position and do what you can when you can & rest when you can’t. Same with others, can you change them, maybe/maybe not, again acceptance of the way it is the way they are is the key.
I have not said this to sound ignorant, condescending, emotionless or the expert. I’m just trying to be as helpful as possible to someone who seems to be struggling
I take no offence to anything you've said but I disagree that it should me thinking about mindfulness.
I'm mindfull enough to know when to comment on a post & when not to.
I have enough self-discipline, common sense & mindfulness to leave it up to others who are going through similar circumstances to reply to the poster.
I would never dream of assuming how someone's symptoms made them feel, or tell them how lucky they were.
You're telling me that I should be the one to practice mindfulness, in order to allow others to continue upsetting people,
made all the worse because like you've said, unless they have suffered it themselves they're ignorant & clueless.
They need to take a step back & leave it up to others, it is they who need to be mindful.
My difficulty is that I suffer with both persistent afib & Dilated cardiomyopathy/ HFthat were diagnosed at the same time so I have no idea which of them are causing me the most debilitating of symptoms, but I do know that each of them contributes to worsening the other. My life has come to a complete standstill for the past 7 months but there's nothing I can do about it.
Like most, I use HU for support & guidance, preferably from those who are in the same or a similar boat to mine, but it seems a few use it as a social pass time.
And herein is what I mean about written vs spoken word - I’m taking your words one way and you take mine another way
My comment about mindfulness to you, appears you took it not the way I intended. It was in no way to excuse others behaviours & how they come across to you or me. It was meant only to “help you” - to try to reduce the anxiety & pain that others may cause you or that your symptoms/conditions may cause you. I was in your position 2 yrs ago, unable to get out of a chair without having to wait 30 seconds to get my breath & move my feet……
I only speak from how I dealt with things and what helped me back then & still does now.
Try not to be angry or upset by what others say or do, because, others won’t give it another thought once they walk away. It’s still affecting you now is all I’m saying - no malice/intention meant at all. All I am saying is, “do look after yourself, try to have the best day possible, for you! 🤗
Thanks, I appreciate that you've taken the time to explain further & I do get the point you've made now, with they walk away without giving it another thought, their ignorance must be bliss.
One thing I got from a mindfulness session was, if you are stuck in traffic, inching forward, you know your late - nothing will change the situation? Just sigh, oh great, what music shall we listen to today? That is like the the people who walk away, non the wiser of the state of mind they put you in. It’s only you who controls how you feel. 😊
Your frustration is completely valid, and you’re not alone in feeling this way. Many people with complex or overlapping conditions like Dilated Cardiomyopathy (DCM) and persistent Atrial Fibrillation (Afib) struggle with similar challenges when others misunderstand or oversimplify their experiences. Here’s some perspective and support to help you feel seen and empowered:
1. You’re Right: Every Heart Condition Is Unique
DCM + Afib is a specific combination that requires nuanced management. While others may relate to isolated aspects (e.g., heart failure or Afib), the interplay of both conditions creates unique symptoms and treatment challenges. For example:
DCM weakens the heart muscle, reducing ejection fraction, while persistent Afib disrupts rhythm, further straining the heart.
Medications (like beta-blockers or anticoagulants) must balance both conditions, which can complicate tolerability and side effects.
Comorbidities matter—other health issues (e.g., diabetes, hypertension, kidney function) add layers of complexity that outsiders rarely grasp.
2. The "Well-Meaning but Ignorant" Crowd
Many people project their own experiences (or secondhand anecdotes) onto others. This often stems from:
A desire to reassure (e.g., “My aunt had heart failure and lived to 90!”), which inadvertently minimizes your reality.
Lack of awareness about how variable heart conditions are. For instance:
Afib types: Paroxysmal vs. persistent vs. permanent—each has distinct implications for symptoms (palpitations, fatigue, dizziness) and treatment (ablation, cardioversion, rate vs. rhythm control).
Heart failure classes: NYHA Class I (mild) vs. IV (severe) are worlds apart in daily impact.
Toxic positivity: Phrases like “It’s not that bad” or “Stay positive” dismiss the very real physical and emotional toll of chronic illness.
3. Finding Your Community
You deserve to connect with people who truly “get it.” Consider:
Specialized support groups:
Online communities for DCM (e.g., Cardiomyopathy UK or the American Heart Association’s support network).
Afib-focused forums (e.g., StopAfib.org), where many discuss overlapping conditions.
Facebook groups like “Living with Dilated Cardiomyopathy” or “Afib Survivors”—these often include members with dual diagnoses.
Clinical trials or registries: Organizations like the Dilated Cardiomyopathy Consortium connect patients and researchers, fostering community and advancing understanding of the condition.
Therapy or counseling: A therapist specializing in chronic illness can help process frustration and grief, which is just as important as physical care.
4. Handling Unsolicited Opinions
Set boundaries: Politely but firmly say, “I appreciate your concern, but my care team and I have a plan tailored to my specific diagnosis.”
Educate when you have energy: Share resources (e.g., “DCM affects the heart’s pumping ability differently than other types of heart failure—here’s a link if you’re curious”).
Ignore the noise: Protect your mental energy. You don’t owe anyone a justification for your experience.
5. Advocating for Yourself
Track symptoms meticulously: Apps like Cardiogram or journals can help you communicate clearly with your care team.
Ask about advanced care: For persistent Afib, discuss options like ablation or newer anticoagulants. For DCM, inquire about devices (ICD/CRT) or emerging therapies (e.g., SGLT2 inhibitors).
Highlight drug side effects: If medications (e.g., amiodarone, diuretics) impact your quality of life, push for alternatives. Regular bloodwork (e.g., kidney/liver function) is critical, as you noted.
6. You’re Not Overreacting
Heart failure and Afib are life-altering diagnoses. Fatigue, breathlessness, and the mental load of managing chronic illness are exhausting. It’s okay to grieve the life you envisioned, to feel angry at dismissive comments, and to demand better understanding from those around you.
Final Thought
Your voice matters. By articulating these frustrations, you’re already helping others in similar situations feel less alone. Keep advocating for your needs, and seek out those who listen with humility and respect. You’re navigating a tough road, but there are people out there who understand—keep reaching out until you find them. 💙
I understand heart failure very well, I inherited a faulty gene and at 58 I was diagnosed with dilated cardiomyopathy, severe heart failure, lvsd amongst other things. My heart did fail it was done. I waited on the routine transplant list for two years can you imagine that hell Every day and night waiting for a phone call while your symptoms of heart failure get so bad you can do nothing I lived alone and it was awful, when I could wait at home no longer I was taken into hospital and put on the urgent list in July 2020 no visitors at all just waiting day after day for a heart, I got my transplant when I was nearly 62 the same age my dad died, it has transformed my life and I can't thank my cardiac team and my donor's family enough. It turned out I had arythmogenic cardiomyopathy and unfortunately my youngest son has the faulty gene and will probably go through the same thing. It's awful, Char
It must have been an absolute nightmare for you having to wait for so long Char. I can't imagine how it must have felt although I am struggling very badly with extreme fatigue.
I'm breathless just after getting a shower let alone anything else, limbs feel heavy and I'm struggling to do anything let alone exercise, so Imagine being told by someone who has lone afib who tells everyone they can easily cope with their symptoms that I should think myself lucky.
Pleased you got your heart transplant In the end. My mum passed away after a cardiac arrest when she was just a few months older than I am now. I have similar symptoms to hers prior her to death.
The waiting was horrendous, I would never wish it on my worst enemy and it didn't help that we went into lockdown and we were all so isolated waiting in the HD ward stuck in our own rooms but thankfully my transplant went well. unfortunately last year I had bowel cancer I just felt why me?? Once again the Scottish NHS kicked into gear and I had surgery to remove the whole right side as the tumor was in an awkward place and they couldn't do a re section, my transplant caused them a lot of problems especially for the anaesthetist and it ended up taking 6 hours.I am hoping that 2025 might be a better year but the worry about the heart and cancer is always there and always will be. Take care char
If I ever get well again I'd love to interview people like yourself during a podcast to make people aware of what can happen with heart failure. I wish you all the very best Char. Xx 🥰
Maybe forums are not for you if they are making you so angry and not giving you the support that you expect. We all appreciate that everyone is different with different needs, but it is unfair to criticise people responding who are trying to be supportive by sharing their own experiences. There are also a variety of views expressed on open forums, again because we are all different, just scroll on if you don’t share those views, it isn’t worth being so angry about them. I wish you well in resolving your own problems.
I disagree, we all need support but as I've clearly stated, if I don't know enough about a certain heart condition then the last thing I should be doing is assuming & downplaying the posters symptoms. It's extremely rude & unhelpful.
Hi B65. Sorry to hear of your condition - hope you find some comfort in some of our posts.
Joining a public forum is always going to be a risk, in that you're effectively inviting contributions from all & sundry. That large group will include those who have a lot to say without the necessary knowledge and sympathy to make sure they are delivering their opinion in the most tactful and appropriate way possible. Unfortunately, that comes with the territory.
Whether or not you benefit overall from membership of this forum depends largely on your ability to filter posts and separate the helpful from the less-than-helpful. Not everybody finds that task easy. It may be that you'll end up being more irritated by the less-than-helpful than gain good advice and quality support... if that's the case, don't be afraid to step away - nobody needs to be aggravated by reading the very posts that are supposed to help them cope with their health issues.
On one of the other boards here there was a poster who took a dislike to me and would pop up to criticise whenever I dared open my mouth about something and would say things indirectly about me to other posters and this had gone on for 3 years as well!
One Sunday evening she had made one nasty comment too many and I had had enough and I laid into her and told her what I thought of her and her actions and I don't regret it either!
I regret not doing it sooner though and I got banned from that group which I feel they did me a favour doing that as I'm away from that clique there and being got at at every turn!
She claimed I had laid into her for no reason but with people like that where there's no sense there's no feeling either!
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Some advice on meds
Heart Failure, 5 years on from diagnosis.
Heart Rate Measurement by Apple Watch with AFib
