I’m mad and must post this before I explode. Today alone I’ve answered a dozen e-mails or comments from folks suffering with atrial fibrillation around the same theme—their clueless doctors!
Now don’t get me wrong, there are so many good doctors out there. And the doctors to those folks who e-mailed me are probably very good, too. The problem is that most of our doctors don’t truly understand what afib does to us. And part of it may be that we don’t communicate it so that they will understand. So it’s time for us to stand up and tell them exactly what afib does to us.
Afib takes a huge toll, not just physical, but emotional and financial as well. Not just on us, but on our families, too. Here are just a few of those things.
- Huge medical bills from all those trips to the emergency room, tests, and procedures.
- No medical insurance–once you have afib, you can’t get medical insurance. If you can get it, you can’t afford it because it’s too expensive. (Try $1,600-$2,500 per month and more just for a family of 3.)
- Losing time from work, which means lost income.
- Losing your job, or even having to change careers.
- Losing cars, houses, life-savings, retirement savings, everything!
In my case, my family had to travel with me as they couldn’t let me out of their sight for fear I’d have blood clots and a stroke while off by myself (due to blood clots and a near-stroke with my very first afib episode). Now that’s expensive!
But we don’t talk about the financial impact—it’s just too embarrassing. We have to change that. If doctors don’t know this, they will just diddle around, experimenting, figuring that they will eventually find a treatment that works while we deal with meds with nasty side effects that make us feel like crap, meds that quickly stop working, or being on Coumadin and looking like we’re battered. We’re the ones suffering, and our doctors just don’t realize what it’s doing to us. Give us an afib cure already!
And while they’re fiddling, Rome is burning. Afib begets afib–the longer you have it, the worse it gets, and the harder it becomes to solve. I hear from so many people that just can’t get it solved because they have had it for so long.
As a patient, I tell my doctors that I want to know all of my options so I can make the decision. And I want to research all the pros and cons and talk with others before I do. As my doctor, you should expect no less from me than to be an informed patient. Help me to be so.
I see many folks just going around their doctors and self-referring to surgeons and EPs (electrophysiologists are cardiologists that specialize in heart rhythms) looking for an atrial fibrillation cure. They shouldn’t have to. Our doctors need to work with us as a team to help us solve this problem. We have to help them truly understand how afib affects us and what it is doing to our families as well.
Life is too short to live it in afib.
So, what about you? What have you experienced? Does your doctor really understand and help you solve this problem?