Not a facicous question.Wanted ideas for a workgroup I am attending.
Mine would be improve communication.Nightmare sometimes finding out what is happening with my referrals,waiting lists etc.
I am hoping I will get lots of different views.
Thanks in advance.
Good question.
Better cons for sure but to be specific:-
Education about what AF is and how it affects everyone very differently.
Education that although it can feel ver scary, it’s a chronic condition and learning to live with AF is important.
What you can do to help yourself:- Lifestyle measures you can take.
What questions it’s important to ask your doctors and how to understand what the replies mean for you.
Become an expert patient.
Ask about ALL treatment options, don’t accept what you are first offered as the only option.
Recommended nutritional (not diet) advice.
Provide emotional/psychological support.
Don't know how I found this support group probably Dr Google but I have found most of the things you mention from here and a lot of it came from you CD dreamer.Still on my long journey but helped a lot on my way.
Agree with that CD
My one wish would be to have a considerate consultant or EP like the UK's Sanjay Gupta, he understands that we are the ones who know our bodies best, especially regarding medication. He can also advise on what vitamins, minerals and foods may help, or even trigger our AF.
Most of what I've learnt has come from this forum and Consultant Sanjay Gupta's YouTube talks, so the least medics should do is to direct people to this site.
Jean
Hi Jean, My neurology specialist said to me that she listens to Patient not text books. not many around
Sounds like you have a good neurologist there. That's all we want really is to be listened to and our views to be taken into consideration.
His videos are informative and he seems very caring, however I emailed him a question about one of his YouTube videos and never heard back.
Jim
That's a shame he didn't respond to your question. Was it one of his older posts?
It was a Youtube video forgot how old it was but I did get an auto response from his office that it was received.
He sometimes looks on this forum, so it may jog his memory if he sees your post.
I would like to see more cardiothoracic surgeons offering the mini maze. This appears to provide a cure, as opposed to improving QOL.
I need a procedure to enable me to get off anticoagulants (and other meds) which ablation doesn’t do.
Better awareness in the general public,and also GPs.AF screening for all.
Sorry that's two but ...
My wish would have been the same as yours.
That everyone was automatically referred to a patient caring/ listening EP who knew his job inside out with a good proven track record. x
I would like this condition to be more widely recognised as it seems there are a lot of us who have it. I had never come across anything remotely touching on it until I was diagnosed. Better education for youngsters about how to maintain a healthy lifestyle and how to look after your body would be a good thing to catch a lot of problems before they begin.
Upon being told you have AF you get a session with the arithymia nurse straight away to explain what it is, what it isn't, and what to expect going forward. In my wife's case , we had to wait 3 months and finally paid privately for an echogram to get to that first appointment.
I paid for an echocardiogram too, at the time I needed to know if I was going to drop dead. When in A&E and first diagnosed, I asked the consultant who saw me what could happen and she said either a stroke or my heart could just give up beating - honestly what a thing to say!!
I paid to have one as 3 months to have free one .£426.But it was mid COVID crisis. Didnt help me get seen sooner but I felt better knowing no heart failure.
Exactly, my wait for NHS one was the same time. I'm going back 17 years now, what I didn't realise was I'd have to pay also for someone to interpret the results too. I think back then it was something like £200-£300. Yes hearing the news that your heart was fine structurally, certainly makes you feel better. Perhaps A&E and GP's should have leaflets to hand out explaining AF and letting us know its not life threatening.
My wish would be for quicker echo or MRI testing to show that the heart is structurally sound and that, no matter that it sometimes feels like the grim reaper is around every corner, he really isn't.
Steve
Each health trust runs a monthly info and support group that includes patients and an informed health professional.
The one thing head and shoulder above anything else in my opinion is that more work is done on the cause to allow the prescribed medication to treat the root cause of the condition rather than the symptoms.
As you well know shcldavies a cure makes no financial sense.
And so many causes. It’s often a symptom, not a disease. How can you treat when there is no one cause, unlike a transmitted disease or an MI or cancer.
What are the causes and what are the symptoms, is it possible they can be misleading. Electrolytes may play a large part in many of these conditions but for example if your say low in cell count magnesium - why is that? Could it be what we eat or drinking too much alcohol which prevent absorption of magnesium or too little acid in our stomach (through say taking PPIs as an example). How we produce adrenalin, how our nervous systems work, how the transponders that feed our nervous systems work etc etc all need to be effectively analysed to get to the root cause. Given the right funding all these potential causes can be either discounted or identified as the root cause allowing the best possible treatment. Until the work is done we just don't know.
My view is it could be all of above or none of them. We are all going to have very different and multiple causes. That’s why I am pro individualized medicine but that’s expensive and won’t rely on drugs so you have to ask - what’s the incentives here for the medical manufacturers? Do they really want to fund research for a cure ?
I’m pretty sure I’ve gotten to the bottom of my causes and AF was a symptom. Managing the underlying conditions (note plural) has reduced my AF burden to less than 1% in 12 month period.
I take a wholistic approach to ill health so I now have a pacemaker which keep ventricles synced, treated sleep apnea with CPAP - stopped nocturnal AF almost immediately. Take meds for neurological condition which has had added benefit of controlling my oh so low BP which caused low O2 sats, took HBOT for low O2Sats for 12 months, see a Chiro regularly & do yoga and Pilates for posture, eat well, did a lot of work on breath control, get bloods monitored on a 12 weekly basis and exercise when I can. Can’t do anything about the genetic factor unfortunately- my Dad also had AF but in those days it was ‘just palpitations’ and I can’t do anything to stop ageing degeneration but doing all I can to keep up with research that’s showing if you do the right things early enough in life (too late for me now!) it’s thought you can delay if not stop the process.
Unfortunately therein lies the problem to be exposed for what it is
Agreeing with you on communication. I was diagnosed in February, and I’m grateful to be on both anticoagulation and dronedarone. Back into ‘same day emergency care’ last week as I had AF again. They seem pretty unworried as the drugs are meaning that the highs aren’t too high. Told me to go to A&E if I had chest pains. It lasted eight days though, so that has worried me.My first actual cardiology clinic appointment is in July.
I suppose I would just like more information in the meantime, guess if they are unworried, then I should try to be calmer! I am lucky not to feel palpitations and breathlessness much, but get horrible dips in blood pressure overnight.
So, although the general nurses and doctors are really good, I would like to speak to a cardiologist.
I do find this forum, and sites like York Cardiology, plus the BNF a great soured of information, but really want to help keep myself as healthy as possible. Including feeling reassured about supplements that might help.
Source not soured! Automistake matching my mood 😂
To not have AF thought of as insignificant or non life threatening.My AF has caused my heart to enlarge, resulting in a valve issue and my now having to have full on surgery.
AF needs to be taken more seriously.
I wish that all those with AF are gifted with total immunity to anxiety
HiMine wud to get folks to slow down when walking!!!!
I have AF on exertion!
Cheri. JOY
Watch out for those following and be attentive and kind.
Why do we need to explain our state to EVERYONE!
What a great question!
Wish: that people would understand that afib causes symptoms that are very similar to anxiety. Don’t dismiss your symptoms as “just” anxiety caused by your situation. Don’t blame yourself or let others blame you for having afib.
I would like all of the medical profession to appreciate what an unpleasant and debilitating condition P-AF can be rather than making light of it and being dismissive of what many call mere 'palpitations' .
If you have Vagal AF should you be identified when they join the forum?
Interested in a lifestyle change that could be a breakthrough in your general Quality of Life & reduce AF?
Are fish oils good for you if you have AF
Low BP in patients with AF may be harmful
Do you want to help with local screening for AF?
