I am changing my policy on comments.
In the past, if you had one approved comment then all of your subsequent comments would post without moderation. I changed that.
Now I will moderate all comments. That means there may be a delay.
Another change is that I am not going to allow personal medical anecdotes. The reason is that heart rhythm diseases, especially atrial fibrillation, affect people in diverse ways. I counsel patients never to compare their problem with their friends’ problem. Therapy for AF has to be tailored to the individual. What’s right for you could be completely wrong for your buddy.
I will also not allow links to dubious websites. I know what many of you may be thinking… my view of dubious may be different than yours. Sorry.
I recently came close to closing comments for good. But I didn’t. Probing comments made by a journalist early in my blogging career stimulated me to look more critically at what I wrote. It was an inflection point of sorts.
WordPress has tallied more than 4400 comments since inception of this blog. I’ve learned a lot from these. I hope you continue to write.
JMM
P.S. I receive many emails through the contact form asking for advice about specific situations. I cannot respond to these. It’s unwise to give specific medical advice over the Internet.
Ken Grauer says
Unfortunately, given the way things have evolved on the internet — moderating comments (which becomes amazingly time-consuming) is a necessity … Thanks for taking this on. It strengthens the validity of the comments that are made.
Donald Lewis says
John, hoping this post will not be blocked, I won’t go into details, but anecdotal information about my heart condition and also a situation involved with my alcoholism — 25 years ago reformed, I am happy to say — has had profound positive influence on my health and well-being. Of course anecdotal information can lead to incorrect patient self-diagnosis, and dealing with that must get really old for a responsible medical practitioner. However, I have experienced egregious gaps in what was told to me by practitioners that I had every reason to trust and feel to this day were better than average. When I went back to these practitioners with what I had researched on my own, PROMPTED BY ANECDOTAL EVIDENCE, they had to agree with me. I have absolutely no doubt that if I were to tell you privately the circumstances you would agree 200% that I had done the right thing in more than one example. I would be happy to give you that information.
If the practice of medicine was perfect with 100% disclosure of side effects for all meds and 100% disclosure of the pros and cons of every treatment option — or of the no-treatment option — there would be little function for anecdotal evidence. As you know, this utopian situation is far from reality.
Perhaps the family of an elderly person who is grossly over-medicated and has become a prematurely senile zombie — an all too common scenario — could use anecdotal evidence that cutting meds to bare-bones should be considered.
If you were to allow anecdotal evidence on a case-by-case basis in the comments this will not win you a popularity prize, but neither will your discretion regards website links!
Respectfully, Don in Austin
Diane says
I have really enjoy the anecdotal stories of AFIB posted here, and I’ll miss them. I’d love to hear more of Don’s story as well. Often, reading these stories has prompted me to consider improving my diet (at least one poster here has reported that cutting out unhealthy foods helped eliminate his AFIB).
Donald Lewis says
I understand if this post is blocked. But, by a previous poster’s request here we go:
#1
About 25 years ago I realized that my long term alcoholism was going to result in a long overdue DWI, a fatal car crash or premature death. I talked to my GP about this and requested a scrip for antabuse. It seemed to be going well with my ritual of taking antabuse before bedtime every night and I was alcohol free. The only problem: I started feeling worse and worse — almost worse than any hangover I had ever had! I consulted my GP and he told me my body was going through such a radical readjustment after decades of alcoholism that this withdrawal symptom was to be expected. I believed him but I sure wasn’t feeling better. Meanwhile my wife talked to a friend — not a doctor — who had once worked as an alcohol and drug abuse counselor. She immediately told my wife, “Oh. the antabuse can do that. We used to see that a lot. Some people react to it very badly.” Discontinued antabuse and obtained immediate relief. Still alcohol-free to this day.
#2
Two years ago last October I suffered cardiac arrest. I was fortunate that bystander CPR and timely EMS/Fire presence saved my life. So, while very grateful to be alive and even going on my bike rides again, I was disappointed that I lacked my previous stamina. I had many echocardiograms during this period and they all came in at 37.5% — read by the same cardiologist every time. I was determined to regain my previous heart function and did too many Google searches for “improve ejection fraction” to count, but to no avail. I considered stem cell injections but had trouble qualifying for a legitimate study. I told my cardiologist WHATEVER it might take to improve my cardiac function I was willing to try it. He discussed mediterranean diet, my weight, (not far from ideal) my exercise level, (possibly excessive in his opinion) and my meds. So I was left with doing my best with a damaged heart. Then I talked to Jack. This casual friend had experienced cardiac arrest and complained to his cardiologist that he ran out of breath lifting a bale of hay to feed his horses. His cardiologist referred him to a course of EECP therapy and he felt much better. He wanted to do a repeat for even more improvement but was told it would not qualify for insurance reimbursement because his ejection fraction had improved to 55%. So I looked into this odd therapy and found studies that showed improvement in stamina, ejection fraction, less shortness of breath and that medicare has covered it for those purposes since 2002. (At one time they only covered it for angina which I have never experienced.) Given a negligible cost, especially compared to the $600k + medicare had spent on my 3x bypass and ICD implant, and given it’s totally non-invasive nature and lack of risk or harmful side effects I wanted to check, it out. I proposed it to my cardiologist and at least he signed off on it saying, “Oh yeah, those (Legacy Heart Care) are good folks!” So credit for that, but why did he not suggest it before? Early on, my perception, obviously subject to placebo effect, was “Wow! I no longer stop the cycling group so Don can catch up on O2!” My echocardiogram shortly after the round of therapy came in at 45% — a substantial imrpovement. I have recently finished a repeat of the therapy with my cardiologist’s belated blessing, again medicare approved: “I am glad we found something that worked so well for you!” “Say WHAT?? WE??” Without my friend’s anecdote I would never have known this therapy existed — and not for a lack of looking! Next echo is May 18th. If further gain is documented, great, if not, I have given it my best shot.
These are only two of many examples of the positive potential for medical anecdotes that I am aware of. Are anecdotes a good tool for managing AF? I highly doubt it! Can they open a patient’s eyes to that which they might otherwise never know? Absolutely! This leaves it up to the patient to investigate and ask questions wisely.
Don in Austin
Donald Lewis says
Thanks for bending your rules a little, John!
Verted says
John, anecdotal can be good and enlightening.
Life isn’t a controlled, double blind study. We’re all different.
The anecdotal experiences related in my glaucoma support grouop have led to some interesting scientific research and discovery.
Thanks for your great blogs. You, and your commenters, have been very helpful through the years.
Verted says
Let me just add one quick “commercial” if I may.
Glaucoma is not just about elevated eye pressure. More and more research points to systemic involvement in many cases. Compromised blood flow to the retina and optic nerve is one factor.
Patients with afib need to be aware of this.