One of the coolest things about keeping a medical blog is interacting with people. It’s immensely gratifying to hear from folks that stumble upon my site.
Take this example: While cooling down after tonight’s ride, a cycling friend and ER doc mentioned that my website turned up on his Google search of the new blood-thinner Pradaxa. I was delighted to hear that my posts gave him what he needed for the care of the patient. Hearing such meant more to me than having good legs on the ride.
It’s also gratifying, and at the same time humbling, that so many contact me about their heart rhythm (most commonly, AF) experience. Gosh, there’s a lot of AF out there, and you AFibbers are an educated, information-hungry crowd. There is little doubt in my mind that–for many–AF is an over-achievers disease.
You tell me your AF stories; you ask great questions; you seek to understand the mysteries of an infinitely mysterious disease. I try to read and respond to anyone who takes the time to write. But with tapping the “send†button comes a big, bad, scary conflict.
What conflict?
On the one hand, AF treatment options are finite and knowable. “Just give the answer John; it’s easy,” I think to myself. I’d like to tell you to have an ablation, or stop worrying about one AF episode, or take the blood thinner because strokes are horrible. Like I was your doctor.
But these kind of specific responses would constitute medical advice. And I’m not your doctor. I have not sat in the same room with you. I haven’t seen your expressions, listened to your heart, nor watched how well you walk around—a good measure of how well one tolerates having 50-plus burns made in the heart. Without seeing you, there’s no gestalt, no nuance. Even worse, I haven’t seen your ECG–and there’s a lot of helpful information buried in those squiggles. Call me old-fashioned, but I think interacting human-to-human and looking at an ECG are on the checklist of good doctoring.
But on the other hand, information is so vitally important in AF treatment. Information rocks! Though I know far less than most, I do know AF. I live and breathe this disease. I have even had the dang butterfly heartbeat myself. It stunk. (AF caused me to get dropped by a person of size going uphill.)
Though limited in scope, I could easily tap out a couple suggestions for your problem. It’s tempting. For instance, in writing to an AF patient tonight, I offered this bottom lime: “Ultimately, an AF patient ends up choosing from just three options: live with AF, take drugs or have a procedure(s). And sometimes, no check that, often, AF treatment involves combination platters of all three.†Statements like this are general advice, which hold true for many medical conditions. I could not tell her which of the three options to choose, though I knew–from her words–which one I leaned towards.
One of my goals in writing about medical matters is to mesh real-world experience and my take of the scientific data with words that all can understand. If successful, readers are more informed. There’s a large difference however, between providing general information and giving specific medical advice.
This notion seems inherent, understood; smart people might say “tacit,” but I am going to make it overt: Medical recommendations for your treatment should come from your doctor.
I plan to continue writing about my life’s work. I hope to keep on hearing from you all.
JMM
10 replies on “E-doctoring?”
I will tell you that in the short time that I’ve been reading your posts (I just stumbled onto the blog a couple of weeks ago), you have already made a difference in how I approach my afib. I decided to ask my doctor(s) about the switch from coumadin to Predaxa, and after getting clearance from all, I start on it today. I’m thrilled that I won’t have to worry about food interactions and the like, and I’m also happy that I can finally get off of the PT test merry-go-round.
My afib bouts are rather infrequent, but when they hit (as you well know), they really kick my butt. To me, the medication is the lesser of two evils, because I hate the limitations they’ve put on me. Along with eating better, losing weight, and increasing my activity level, I plan on having the ablation discussion with my cardiologist before too long.
Your posts have helped push me into a more active management approach…so thank you for your effort!
I have followed your blog for some time and have made a comment or two. You are right about living with AFIB, however that simple statement is the key. We are living with AF and considering there was a time not long ago many of us would not be living period. On my last two interrogations some VT has showed up. My EP said that on two occasions it was the real deal and the device came alive and paced me out. I never knew it at the time. Although the knowledge is not far from my conscious mind I try to set it aside and live my life and be grateful for the decades of dedication by medical researchers who are responsible for all the thousands that would have passed before their time.
You are also right about knowledge…. patients with it help to keep their doctors on their toes. LOL
Hey John, I wanted to leave a comment in one of you Prdaxa blogs, but the comments section in closed to new posts.
This is regarding the GI effects of Pradaxa. My cardio and I decided to go with the Pradaxa about 8 months ago for several reasons. It’s been a long road since then, but I would rather do a private emailing with you about my adventures. I think you would find it interesting.
Anyway, I had a lot of GI effects at first, but over time they have calmed down somewhat. I find taking the Pradaxa in the middle of a meal helps. I also went back on a PPI, which I don’t normally like to take.
My afib adventure started out as a vagal thing, and GI problems would fire it up, so it’s ironic that the very thing that is given for afib can perpetuate the afib. There’s a lot more to the story, but I’ll save that for a private discussion – again something you might find useful. A co-worker was on coumadin, and hated it because of the GI problems from it, so I guess it varies from person to person.
You have my email if interested.
While I appreciate the conundrums a practitioner faces giving medical advice out online, please understand the growing usage of these Pay for Advice Medical Forums. Where one practitioner will hesitate another will advise for a fee and the patient is left questioning why the need for hesitation.
Additionally, many do not have access to specialists. For instance, the nearest cardiologist is another province away and my hemotologist is 16 hours away. The GPs in the town I live in are so overworked that I travel two hours to the nearest city to see my GP once a month.
With the plevy of information on the Internet, practitioners are also relying on the patients ability to access this information. Both my neurologist and specialist asked if I had access to the Internet and asked me to research x, y, and z for my care. Additionally, they will sit in their offices during an appt scrolling through symptomology on their PDAs while a patient describes reactions or symptoms.
Finally, due to all of the above, many patients are seeking refuge in online support groups that have disclaimers that “This is not substitution for medical advice” but in the same breath exclaim “Knowledge is Power” and admit to using anothers’ reaction to drug A as a decision making tool for their future course of treatment.
Online information has become so infused in the course of a patients’ care that it may be difficult to delineate where and why a practitioner draws that line in the sand for diagnostic criterium. As information becomes more digital, ECGs can be scanned, MRIs can be emailed and virtual appts can be made using Skype and webcams.
I believe a niche market will be open to practitioners willing to define how they will operate in this new age of virtual information.
Thanks. Very well said, and I understand and appreciate the response. Conversely, all that we, people who have this frustrating ailment and are semi “A” personalities, simply need a solid set of options, If I most likely have 5 years and then go into CHF then I can plan and act accordingly. If I can power through it, keep running till I can no longer go like I used to, and not do a lot of damage, let me know. If the ablation is going to be 30% effective and I should wait for technology or do a mini maze.. let me know. The one thing that we do not do well with is uncertainty. Ever since I went into persistent AF, I have more good days than bad, but when a bad on hits, man o man. Over the last 14 months, I have yet to get a solid “if / then” breakdown from 3 groups of physicians, it is all elective and left up to me. I am in the procurement business, I can tell you how to best manage your business spend, I am not really qualified or experienced enough to speculate on treatment options for a medical problem. Again, thanks as I appreciate the frank response..
Rosemary, your comments are very insightful. The internet is a wonderful thing, and Googling will get you a wellspring of information, unfortunately some of which is of dubious value.
I stay away from sites that like to proclaim on the first page things like “Secrets Your Doctor Won’t Tell You”. However, I have learned so much in depth from finding balanced websites and blogs like this one.
I’m always able to take back to my regular appointments a lot of questions and comments, based on what I’ve found.
I know that some doctors don’t really like their patients doing this, and I appreciate highly those who take the time to listen to my questions. Sometimes the research provides more questions than answers.
I also wonder, as you do, in this digital age how long it will be before we have access to a wide range of e-specialists and e-advisors for fee.
Hi there John,
I’ve also been reading from you for a long time and just sent your link on to a cycling friend. I wanted to thank you because, as I have a rhythm disorder, he has learned about it through your site, while looking for fitness advice, and it has really helped him to not be so afraid of me, or what could happen. I did send you a lengthy email a few months back but not sure if you got it. Thanks for being here, John. Some of us don’t have the kind of access to doctors that we’d like. It helps for one to take the time to try and educate and share.
oohhhhh……. no never !!!!! e-doctoring. who would want to fill and take a prescription by an e-doctor. i’d feel in better safer hands with a witch doctor. i’m not anti tecnology or net phobic, but e-doctring just seems scary.
My wife pointed out to me last night when we were talking about this blog, that in a lot of rural areas, there are clinics that utilize e-docs in various ways, as there are no specialists in the area. the types of e-doctoring she’s talking about are fro things like emailing or ftp’ing test results to specialists for evaluation, and having things like teleconferencing and Skype for “face to face” patient-doctor consults. this is a bit off track from the basic discussion, but it is an example of how e-doctor technology is playing a greater role.
I’ve been tempted to ask you to resolve the different approaches that my two EPs
want to take during my ablation. Fix the accessory pathway and stop, or go straight to the PVI, neither wants to do both. I decided to go with the more conservative approach by the more experienced doctor at the bigger treatment center. I may end up with a second procedure but I can handle that better than a complication. I go in 5 days after the Masters Nationals road race. hoping for a non-afib race… Anyway, thanks for your insights and wish me luck finding that treasure.