I'm both a physician (EP doc) and a patient. Even before my own complex medical journey this past year, I always have worked hard to put myself in the position of my patients, never losing the human element and always trying to anticipate patient needs to allow for shared decision-making.
But this past year has opened my eyes further, in a way that can only happen when one is sitting up on an exam table, lying in a hospital bed, and interacting with fellow patients. I've now seen more clearly than ever many of the barriers, both informational and emotional, that can get in the way of therapeutic relationships between doctor and patient. During my period of health convalescence, I used the time to focus my renewed passion on promoting patient education and empowering patients who need care in my specialty. Because time pressures in the office environment so often interfere with patient education (or else the doc runs very late, like me!), I thought that creating some basic patient educational videos could address a gap in doc-to-patient information. And I also have witnessed how often docs use medical language rather than lay vocabulary, and also rush through explanations of complex topics. So I tried to take things slow, use pictures/animations, and avoid medical terminology, just as I have always tried to do in person.
These 2 educational a.fib videos were created purely to reach out to patients in need of simple explanations so they can begin to have meaningful discussions with their health care providers and more actively engage in decision-making. If this is not an appropriate forum for sharing them, I will gladly take this post down. Because I will be creating additional educational content, I would welcome any feedback or different perspectives to help me improve my effectiveness in patient education.
Welcome to the party , however late! We at Atrial Fibrillation Association have been working at this re-education for eleven years now and here in UK have some caring doctors and politicians on board and our US office is expanding all the time. Doctors could save themselves a lot of time and effort by directing patients to all the fact sheets and booklets on AF available from our website but few actually do. Our "Recovering from an Ablation" fact sheet is particularly helpful as it addresses all the things doctors never tell patients and was complied by patients for patients.
Thank you so much for your kind words and insights! I completely agree that there are so many resources available, and yet they remain under-utilized! And that is precisely my challenge, as I try to figure out the best ways to help my EP colleagues leverage videos, fact sheets, booklets, and other educational tools that people have worked hard to create! I really appreciate hearing about the additional resources you mention above!
I was fortunate that my EP totally got how AF was ruining my QoL which I think some people have really struggled to get over to them and get this part understood.
I have a fantastic relationship with my EP, which I'd hope so after 5 ablations, and have always felt listened to and reassured.
I did however have to do a lot of asking questions and reading stuff on here and the BHF website, and pick up my own leaflets in clinic in the initial stages 5 years ago.
Thank you so much! I'm so pleased to hear you have a great relationship with your EP doc, but you make the excellent point that nowadays, patients have to be their own best advocates, which includes asking questions and engaging in some self-education. Not everyone is comfortable with questioning their doc, and reliable resources are not always easy to track down. So that is a really important message to broadcast - ask questions!
Hi and welcome. I am sure that many newbies will find this information useful.
And I couldn’t agree more about communication between doctor and patient - lack of or inadequate - so anything that aids that is really helpful. The AFA have just started to cover US so you may like to see if you could contribute - I believe there is a conference coming up soon.
I and my husband attended the UK Patient Day for the 3rd time and found it very helpful and useful and are just in awe of the work they do on education of patients but also of GPs, politically - producing a White Paper last year - looking at best practice and giving awards.
You may, as a professional also be interested in the work of Dr Gupta (not the US one) of York Cardiology. He is also an EP and a patient and often posts videos on arrythmias on YourTube and this forum and has a FB page with lots of useful info. Just search York Cardiology into the search box on YouTube. I know a lot of the US contributors often say they wish he was in the US!
I don’t know if you are aware of these resources but now you are hope you will get involved and spread the word.
I believe Flapjack, who replied to your first post, is going to the US for the first conference.
Best wishes and don’t forget that we can be here for you as well, AF takes a huge emotional as well as physical toll and which is important to address. The biggest unaddressed factor IMHO is the accompanying anxiety which is not only distressing but also exacerbates symptoms.
Thank you so much for your wisdom and detailed thoughts about forums for AF education. It's a team effort to ensure every patient has the knowledge they need to make good decisions, and it's also important to remember that education always works in both directions during every interaction! And of course the emotional well-being of patients is intertwined with the medical well-being, and should not be ignored.
Yes of course - poor word choice on my part, as I meant "forum" in the abstract sense, to include societies, associations (including AFA), and other groups that have education as a primary mission! Thanks for the information!
Hello Josh, thank you for the message, hope you find the reply helpful.
I'm so gratified to hear that you found the information easy-to-understand, which was exactly the goal. It upsets me to no end when I hear about doc-patient interactions where the patient left the office confused, unclear on what was said, or, worst of all, frightened. Understanding more about one's medical condition gives a much stronger feeling of being in control, and can ease anxiety. Best of luck to you!
Thank you so much! I wasn't sure if my explanations were "on the mark" or not, but it sounds like they are reasonably understandable! So glad you found them useful!
Thank you for doing this. I have found hospital stays to be very tense as you have to be constantly on your guard to prevent the medical staff making wrong decisions or doing tests unnecessarily. I have had nurses coming to take bloods for an INR test when I am on a NOAC. Doctors prescribing an NSAI. My heart meds being taken from me and not given at the right time as you can only have them when the trolley comes round. The assumption made that I have high blood pressure because I am on a Beta Blocker. I find that I am constantly educating about AF and its associated complexities. Goodness knows what would happen if I didn't have the mental capacity.
You are quite correct that nowadays, patients need to be their own advocates! And in that regard, the more you know, the better a self-advocate you can be!
I know I was very confused after being given fecainide as a PIP and being pleased with the effects only to be told not to take it from another consultant ...
THANK YOU!!!!! I learned alot of new things. This was the best explanation of what is going on in my heart. Many of these things I didnt not know. Wonderful demo!!!!
One other question about this burning/freezing.... if your destroying/scaring the heart muscle each time you do an ablation, at what point is the heart muscle nothing but scar tissue. Isnt that just damaging and killing off the muscle? Ive had afib for 3 yrs and have refused and actually cancelled surgery due to risk and heart damage. It just does not make good sense to me. Loved your videos!
I learned a great deal watching your 2nd video. I can now understand how ablation works and why doctors have to go back in. I also understand more about why their are different approaches. I wasn’t aware of the top versus the bridge and bottom. I actually chucked when you stated one reason for going back in would be because of being “too gentle” the first time. I guess the heart can be tough.
I think everyone has their own way of understanding the consequences of A-AFib, but your video was the most helpful to my understanding of it. I can share with people in my circle of family and friends who don’t understand what A-Fib is since it’s not like a broken arm that you can see.
Thank you for creating this.
By the way, can you send these videos to some of these dumb cardiologists?
Ha! You are too kind. I agree that, unfortunately, the field of electrophysiology has moved very quickly over the past couple decades, and that rapid evolution, combined with EP-specific language, leaves so many other docs in the dark! So much of what we know now has been developed since many docs did their training, and even those in training nowadays often don't get much exposure to this sub-subspecialty. I created those educational videos for patient/family education, but you're right, they could also have great value for many health care providers!
I'm so thrilled you found these explanations to be helpful! And you ask a fantastic question about this procedure, because the strategy doesn't initially seem to make intuitive sense ! If scar tissue is part of the problem, how do you fix it by creating more scar tissue?!?
There are 3 main concepts that often aren't explained well:
1)When scar tissue forms "naturally" in the heart, related to aging or other medical conditions, it creates a microscopic spider-web of scar fibers (which don't have electrical activity) mixed with heart cells that are still alive but don't function normally; and these clusters of abnormal heart muscle cells can contribute to arrhythmias because of their abnormal electrical properties. By using ablation techniques, it is the abnormal (but alive) heart cells that are being targeted, and the type of scar that remains after ablation is uniform (i.e. all scar tissue), without any sick/abnormal heart cells at that spot.
2)When performing ablation to eliminate "trigger spots" and areas of scar, the docs are targeting the most abnormal areas of the atrium, which, luckily, are often in locations that are not as important for the actual squeezing activity (for example the area in and immediately around the pulmonary veins, and the back wall of the left atrium).
3)In some patients, more extensive ablation needs to be performed in order to effectively treat the a.fib, and in those settings, the doc needs to weigh the pros and cons of "killing off" a greater percentage of the heart muscle - maybe there could be less overall contraction ability when the heart is back in normal rhythm, but perhaps that is still better than being in a.fib for some patients?
Your reply to my question, makes makes it clearer, but at what point does it or should it stop? Each time an ablation happens, that thin wall between the two upper chambers gets a hole punched in it. Then the burn/freeze of cells, that I am assuming do not regenerate. People here have reported 3, 4 and 5 or more ablations. Does the upper chamber of the heart become nothing more that scars?
BTW... your videos were perfect explanation of what is going on inside of me. finally able to send it to family members that dont understand it. Thanks so much for doing this
Another great question. The hole in the membrane between the top 2 chambers will heal closed each time (over a few weeks), so that's not a cumulative issue. And it's often the case that repeat ablations involve further burns/freezes at very similar locations as before, rather than always going to new territories, so it isn't the case that sequential procedures necessarily means whittling away the heart muscle - normal areas are left alone each procedure, and only abnormal areas are targeted, for the most part. Yes, it should be a consideration for the doc to decide the risk/benefit of each procedure, including an assessment of the amount of the left atrium that is being ablated vs left alone. And that analysis should also include the likelihood of success in restoring normal rhythm and the benefit to that patient of continuing a "rhythm control" strategy.
Hello and welcome! Thank you so much for taking the time to create these wonderful videos, it's nice having them in easy-to-understand language, but coming from a knowledgeable professional. I am going to share them, they will really come in handy!
A different condition and topic, I know, but I wish someone would do one regarding hypertrophic cardiomyopathy, as I was also diagnosed with that prior to AFib. It is very difficult to explain to someone, especially because often the only symptom is SCA. They think "I feel perfectly healthy, my heart is fine!" so they ignore family history or siblings doctors suggestions.
Thanks so much for the kind feedback! And I really appreciate the great suggestion for another educational video. It's so true that some people have a hard time wrapping their head around the concept of having a medical condition and needing monitoring and/or treatment when they have no symptoms! And it can be even harder for others to understand, when they see someone "looking completely healthy." As with all things in medicine, education is key to understanding and being able to plan ahead, and that includes friends/family in addition to patients themselves!
oh yes. we both live each day to the max... without fear, without "what if's". He has had this for many years and he does keep it checked with his doc and for the last year, there has been no change!!!!! So we keep on, keeping on, traveling and enjoying everything.
That is awesome to hear, and how it should be! Love your positive attitude, that and a sense of humor really helps! And this is my point exactly, knowledge is power, now I know what it is, I can treat it and share with family and get on with my life.
Sadly, I didn't get the reaction from siblings that I thought I would, but I had to realize not everyone wants to know, or they think they're OK because they have no symptoms, on & on! My oldest sister was put out with me and said "Oh good grief, we could be (gene) tested for every disease but that won't change anything!
I only told them because I love them and their children/grandchildren, and since HCM can cause SCA, it's more urgent to know in my eyes than say a "lesser" condition, one you may not ever get, or one you may be a carrier for but not ever develop the full-blown illness. I hope that makes sense.
Thank you for your very caredully thought out videos , they are clear and concise whilst dealing with the main issues. I have had AF for a long time and have had most of the chemical treatments. I am now on what I think is probably the last combination before having to consider the option of AV node ablation. I therefore watched the second video with more than a little interest and found it to be extremely helpful. Welcome to our group , I hope we may be able to be at least emotionally supportive to you. X
You are too kind! Glad to hear that you and your doc are following a step-wise management plan, and that the video was helpful in framing your options. And yes, it's wonderful and supportive to connect with other patients, which is a very different type of interaction than I have with my fellow health care providers I really appreciate the camaraderie in this forum!
Thank you so much for your time! Really interesting videos! I just had my second ablation where 4 weeks later a 72 hour holter monitor showed AF was present for 5% of the time, otherwise I’m in sinus mode. The doctor is hopeful though that as it’s only 4 weeks after ablation that this may subsequently subside. What are your thoughts?
Secondly in terms of “feeling the pulse” - I probably obsess too much about trying to feel my pulse to see if the ablation worked. From your videos, it sounds as if one can’t actually detect AF via the pulse as it might be just an ectopic beat that we feel in the wrist. I found that these ectopic beats (many showed up on holter monitor) were making me anxious. Possibly unnecessarily so if I understand your video correctly?
Thanks so much for your note. There are many patient-specific factors that go into an assessment about treatment success, and that help formulate a plan moving forward, so your EP doc will be your best guide about your specific situation.
In general, though, there are a couple teaching points that might be helpful to you. First, the heart muscle is inflamed/irritated for a few weeks after an ablation, and sometimes a.fib can flare up early on, but settle down after 2-3 months. So an assessment of the amount of AF within the first few weeks might not necessarily reflect what ends up happening after a further time of letting things heal. Second, you're right that it can sometimes be difficult to tell the difference between a.fib and sinus rhythm with frequent ectopic beats (or short runs of atrial tachycardia), when feeling the pulse. As I had mentioned, the heart rate alone may not be able to distinguish, as one could have similar rates in sinus rhythm as in a.fib. However, the regularity of the pulse is a better way to try to distinguish. A perfectly regular pulse is most likely to represent sinus rhythm (unless someone has an electrical pacemaker that is responsible for most/all of the beats). A pulse that is completely random and unpredictable most likely represents a.fib (regardless of the heart rate). A pulse that is in between (neither completely random, nor completely regular) is harder to interpret; for example it could be sinus with single extra beats, or it could be very brief episodes of a.fib that convert back to sinus on their own. I hope that is helpful!
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