Advice needed!!!: I just signed up to... - Atrial Fibrillati...

Atrial Fibrillation Support

32,400 members38,734 posts

Advice needed!!!

Kahst1 profile image
28 Replies

I just signed up to attend a a-fib conference in Texas in august. I get to spend 3 days with the top physicians for afib. The thing is what questions should be asked? If there are needed answers this could be my time. Any and all advice on what to ask would be appreciated.

Kahst1

Written by
Kahst1 profile image
Kahst1
To view profiles and participate in discussions please or .
28 Replies
Kahst1 profile image
Kahst1

Great question

Paulbounce profile image
Paulbounce

Hi Kahst.

For me ? I know what I would like to ask ;-)

Research in to afib is moving forward in leaps and bounds. In time ablations will be a thing of the past IMHO. What new treatments will there be AND more importantly when are we likely to have access to them as patients ?

I`ll take a punt within 5 years. It would be great if the 'top dogs' gave a hint about new treatments in the pipeline and time frames.

Enjoy the conference. I`m sure you will learn a lot there.

Best,

Paul

Kahst1 profile image
Kahst1 in reply toPaulbounce

Thank you Paul!! I will try to get some answers for you.

Paulbounce profile image
Paulbounce in reply toKahst1

Thanks Kahst. I`m sure there are plenty of questions you will think about to ask - try and pick their brains as much as time allows. Get as much info as you can - for yourself as much as anyone else. If you do ask my question though please post any response here. I`m 100% convinced new ways of dealing with afib are on the horizon.

Enjoy your day.

Best,

Paul

Kahst1 profile image
Kahst1 in reply toPaulbounce

I will, I am looking forward to it. I’m going to take my daughter with me. She is in school to be a physician assistant so I think it will be great for her also.

wilsond profile image
wilsond in reply toPaulbounce

Me too,as there will be fame and fortune fir the person or persons who find a better solution to what we have niw.,or am I being cynical??!!!

CDreamer profile image
CDreamer

It will be interesting to hear the US take on questions on AF. Who are the conference organisers?

I have attended several Arrythmia Alliance Patient Days in the UK - I guess the questions will relate to the speakers speciality - this is a link to 2019 UK Patient Day agenda - it may help you formulate a question to what is for you a burning issue - what is it you want to know? heartrhythmalliance.org/afa...

I have to say I learned more in one day at my first conference than I had in the previous 7 years of AF and getting to speak directly with the specialists is so affirming as I felt for the first time I had a condition which was being taken really seriously, having felt as though I was a complaining Minnie for daring to ask what could be done about it and being told ‘take this med’. NO!

Kahst1 profile image
Kahst1 in reply toCDreamer

StopAfib.org is the organization

Kahst1 profile image
Kahst1 in reply toCDreamer

I agree. I just want to know everything I can. Thank you

ral4 profile image
ral4

Hi

I went to the conference last year and we are going back this year. The conference was great. Well done and Very informative.

Just remember you will not be the only person looking for answers. I would make a short list of Your most important questions. You will get many of your answers by listening to what others are asking and the different doctor discussion's.

At this point, there is no one answer or treatment to afib. Because of this you will leave the conference with a lot more knowledge and somewhat more confused.

By the way, I had my first and hopefully my last ablation a little over 4 weeks ago. This was after 14 years of paroxysmal afib. So far so good.

Robert

Kahst1 profile image
Kahst1 in reply toral4

Awesome I look forward to the weekend. I had an ablation last July. So far so good. I am trying to figure the mental part out. I’m hoping to learn as much as possible. Thank you for your response.

Kenny

Kahst1

Afib itself is not a disease - you can have a healthy heart and have Afib. There is an underlying problem and Afib is just a symptom of that problem. The problem is that nobody knows the underlying problem yet, so they are trying to fix the symptom from happening. If you are young enough you can keep your heart from Afibbing (without ablation or meds) by doing the following:

----------------------------------------------------------------------------------------------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar was the culprit. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again. It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day.

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. So you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. Good luck! - Rick Hyer

Kahst1 profile image
Kahst1 in reply to

Interesting reply!! However everyone is different in the sense that I only had 1 afib episode. The problem was I went from none to persistent. I am looking for reasons why.

Thank you

Kenny

in reply toKahst1

I told you the reason why. Everyone is different, and even the same person constantly changes, so it's a moving target you are shooting at. But it seems to be a slowly moving target, so if you can determine your sugar tolerance and not go over it, your Afib will not return. Also - don't forget about water. If you get dehydrated one day in 200, your Afib will happen one day in 200. Try it - takes no money!

Kahst1 profile image
Kahst1 in reply to

I will thank you

in reply to

I believe that is probably the case for me. I havent been strict in my diet but have made moderate changes and have had no a fib for 14 months now. Ive avoided ablation so far and only dake metoprolol daily, small dose for blood pressure. A couple times Ive overindulged in the sugar/ salt department and did feel my old “ pre a fib” symptoms occuring. Thankfully I drank water, did relaxed breathing and a fib did not occur. I will pay more attention now and start tracking my sugar. Do carbs enter in to the equation or just sugar grams? Thankyou for your input Sugarisit!

in reply to

Ignore my last response - I didn't see this response from you till later. I did not count carbs initially, just sugar intake. I asked about carbs, but nutritionists and doctors could not tell me how much carbs turn into sugar, so instructed me to just keep counting sugar - which is easy to do once you create a cheat-sheet with the foods you normally eat with the sugar content (grams) of each. Once you know your sugar threshold all you have to do is stay under it. HOWEVER - if you are like me your threshold will go down as you get older, so every 2 or 3 years you should count sugar grams again to see if your threshold is less. Once it gets to about 50 grams a day, there isn't much you can do because you need to eat that much to stay alive. At that point it's, as my 2 heart docs said, 1) live with it, 2) get an ablation, or 3) try pills (which have very bad side effects). Hopefully your threshold will stay high. If you are healthy you can live with it without any meds, including blood thinners, per my heart docs and newer studies.

- Rick Hyer.

Cookie24 profile image
Cookie24

I am interested in an answer to A

the question suggested by Aufgeblassen

wilsond profile image
wilsond

Fantastic question....yes indeed

Kahst1 profile image
Kahst1

I already know that answer but it is a relevant question.

Quilafizz profile image
Quilafizz

I would like to know the success rate of PAF after first time ablation at the 5 and 10 year mark, not the 12 month mark which is what they base it on now.

Thanks!

Jjda profile image
Jjda in reply toQuilafizz

Yes, I would like to know that, as well.

MIC1 profile image
MIC1

Just an FYI. Last year the entire conference was made available online in real time and recorded. One of the event sponsors paid for the accesss. As I recall, I think they even accepted questions from the online participants, but I am not certain. The stopafib.org website is an excellent resource, and their forum is good too. Enjoy Dallas.

deAblo profile image
deAblo in reply toMIC1

There was also talk about being able to download it in the future. Wouldn't that be great. It was fantastic

Paulbounce profile image
Paulbounce

I would also be interested in your answer Kenny. I would assume even after a successful ablation there is always a greater risk afib will return.

Best,

Paul

Kahst3 profile image
Kahst3

There was it is a reason for a fib. If you do exactly the same things what do you think will happen. Ablation is not a cure. It’s to help with Qol.

Jt222 profile image
Jt222

I almost guarantee my EP will be there! He's one of the best and speaks all over the place at conferences. Amarnauth Singh, MD, FACC Electrophysiologist.

Ask about the success rate between old rf ablation equipment/tech(still used at many hospitals), and the new equipment/tech that maps your heart way better and records everything in color. The newest equipment makes you feel like you're in a spaceship and Houston ground control(flat screen wall of crazy heart tech technology)combined.

Tell us what you found out while there.

Kahst1 profile image
Kahst1 in reply toJt222

Thank you. I will.

Not what you're looking for?

You may also like...

Advice needed, please!

I'm 66 years old and experienced my first AF attack a couple of years ago which needed an overnight...
IanB48 profile image

Advice needed

Hi I wonder can anyone help. My family live overseas and I dont have any friends who I can call...
Davidc1075 profile image

Advice Needed

What better place to come to for advice, off all you lovely a fibbers! I have had two ablations,...
Lynnsj63 profile image

Help/Advice needed please..

Hi My Mum who is nearly 63 was diagnosed with PAF in April and she's been really struggling with...
Parco profile image

Advice needed please …

Hi, I’m looking for some advice please. I was diagnosed with Afib in A&E after a very symptomatic...
AnnaMill profile image

Moderation team

See all
Kelley-Admin profile image
Kelley-AdminAdministrator
jess-admin profile image
jess-adminAdministrator
Emily-Admin profile image
Emily-AdminAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.