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?
Stephanie,
Congratulations on your great results, and for being afib free. You’re an inspiration to all who want to get rid of their afib.
Mellanie
Christine,
I’m so sorry about what you’re still going through. Have they considered the replacement for warfarin, called dabigatran, as an option for you? It’s more expensive, but easier to use.
Mellanie
Ed,
Thanks for sharing your experience.
Mellanie
hello back in AF again so back down for cardioversion again, god its evil..attacks you when you least expect it xChristine
hello back in AF again so back down for cardioversion again, god its evil..attacks you when you least expect it xChristine
Christine,
I’m so sorry. Good luck.
Mellanie
I know what you mean. Had palpitations for years then started getting these attacks 5 years ago off and on different than the normal benign palpitations. Went through 4 cardiologists all gave me 24 hour monitor I asked for the 30 day one but they all thought i did not need it . always told nothing wrong its just stress lay off the caffeine problem was i was never stressed. all insisted it was only mild benign palps and i am healthy no one took me serious because they could not catch the episodes every time i wore the stupid 24 hour monitor i was not having one. went to hospital a few times they would keep me till it passed and refer me to another cardiologist. to make matters worse when the cardiologist tried to get my hospital records he could never get his hands on them. So again they had nothing to go on finally the cardiologist i have had for a year was out of office when I had my next attack they told me to come in and get checked by the time I got there it passed and I was only having the benign palps again but the nurse practitioner decided to order me the 2 week monitor 1 week later while wearing it at 3 in the morning I had an attack lasted 45 minits I hit the record button and 3 days later I get a phone call from my cardiologist wanting to see me right away turns out they saw abnormal heart rhythm atrial fibulation finally 5 years later they found the arrhythmia I am mad I had to fight for the 30 day monitor afib is nothing to play around with and needs early treatment to avoid it becoming permanent and causing stroke I am only 48 years old Know they want me to have a stress test and echo I am on a beta blocker and baby asprine. People you have to be your own health advocate stay on top of the doctors dont let them tell you it is in your head. My doctor is suddenly bending over backwards since The monitor caught it .This is something I get 2 times a month sometimes a few months go by and I am find then other times It can happen 2 a week longest episode I had lasted 8 hours that was when I went to hospital over a year ago.only finally diagnosed 3 days ago I will let you know how everything goes. Does anyone know the best treatment for afib?
Amy,
I’m sorry you’ve had such challenges.
Unfortunately, there is no “best treatment for afib”. We’re all different, and respond differently to medications and procedures. The best thing to do is to find a specialist, an electrophysiologist (that’s a cardiologist that specializes in heart rhythms), and start working on possible treatments. Some people prefer medications, which is the normal first step, but if that doesn’t work, procedures are an option as well. Some people prefer to move quickly to procedures if medications fail.
Good luck.
Mellanie
Amy before you find out the best treatment the doctors need to find the cause of your afib.
ABLATION IS NOT FOR EVERYONE. THERE IS A CUT OFF AGE OF 70 AND YOU MUST HAVE A PRISTINE HEART, NO STINTS ETC . HOW DISAPPOINYED I WAS.
Contrary to Melanie’s opinion to Amy, above (which frankly surprises me, since she was cured by the same procedure that cured me 7-years ago) there IS a “best treatment” for lone Afib (the kind that affacts 85% of Afib sufferers)! It is called the Wolf Mini-maze, which not only eliminates Afib for an average of 90% of sufferers in one minimally-invasive surgical procedure, but it removes the source of heart induced stroke potential (the left atrial appendage) thus eliminating the need for Coumadin regardless of whether you have any further Afib episodes, and also eliminates need for anti-arrhytmic and heart rate prescriptions! I had Afib for 13 years and encountered three ER-required Congestive Heart Failure and ultimately resulted in an ejection fraction of as low as 15% before the mini-maze and can and do testify about the life-changing results that have kept me Afib free for 7 years. I successfully survived 9 clueless cardiologists/electro-physiologists that erroneously stated that Afib WAS NOT life-threatening, or were in denial that I had anything to be concerned about.
My impression of cardiologists is that most are more concerned about having life-long patients (profit sources) rather than curing the ailment once and for all.
A simple test for their competence is to ask them for a referral or ask them about what they think about the mini-maze cure. If they start bad mouthing it, then tell them like I did, that you are going elsewhere to get honest answers, because you don’t need their referral anyway!
–Chuck
Dear Mellanie: You are doing a terrific job and maybe this is what Godcalled you do, a real lifesaver. I wrote a long time ago. I had heart murmur as teen and probably is congenital. At age l7 I found heart murmur, told to slow down.At age 60 had titanium aortic valve put in and mitral tied up better. Now at 83 I am considered congestive heart failure. Enlarged atrium which they said would make an ablation worthless. Gave me a pacemaker with defib. and stent in one of heart arteries. Took me off amiodarone and left me on coumodin which I weekly test at home. Some talk aboutfuture stem cells in the future if I am hear. I have no rapid heart beats and low blood pressure. Take several heart medicines, see cardiol. monthly. Had low platelet problem which now seems to have improved with prednisone. But my heart dr. gives me the attitude, we have done all we can. Just exercise, diet, take pills, and “wait it out”. I keep searching for more answers and read about the research going on. But I keep asking, am I missing something? I am up every day, walk fine on level, and have mild apnea (Oxy. at nite).
I know my age is against me. As my ef falls maybe I can get an extra pump if I could survive surgery. I read about all the studies in the world as AFib is increasing in all the world. But USA is last to allow anythhing new.
Thank God you are so good in what you find. Can you suggest any other avenues for me.with mky long time afib.??? I read about the OHIO Univ. hosp with the dr. who does 5 box. Which sources seem to be on the cutting edge that I an tune in to. I keep a positive hope that I might make it to 90 years .
You need not publish this long comment or use it as you will. I know your work is helping so many and I pray God will give you strength to live long.. I can understand now drs. are do busy with l5 min. appointments that I dont know that they just want to go with the status quo. I get several heart hosps. publications but you seem to be on the cutting edge.. …—austin coe
Chuck,
While mini maze was the right choice for you, and it was the right choice for me, it may not be the right choice for Amy. It is not the right choice for everyone, which is especially true for those with persistent and longstanding persistent afib.
I am not a medical professional, so I cannot evaluate Amy’s medical history and whether mini maze is the best treatment for her. Lone afib is only about 15% of afibbers (NOT 85%–that 85% is those with underlying heart disease).
Lone afib is more common in men than women. Women are at much greater risk of stroke, often due to underlying heart disease that is not easily diagnosed in women (stress tests find 2/3 of heart disease in men, but only 1/3 of heart disease in women). So it’s not appropriate for us to tell her what is the best FOR HER since we do not know her co-morbidities. I cannot agree that mini maze is definitely the “best treatment for her”. We do not know that, and my personal experience is that mini maze success rates seem to be higher in men than women. Most of the failures I’ve seen have been in women.
Also, today many mini maze surgeons will not do the procedure on those with paroxysmal afib unless they are referred by an EP for the procedure as they believe that trying an ablation first is the correct approach. Thus, they only do those with persistent afib or with enlarged left atria or other conditions that make catheter ablation less appealing.
I understand your zeal for the procedure that cured you, and I have a lot of zeal for it, too. But I also know that it is not the right answer for everyone. I am not a medical professional, and thus while I can provide facts, I cannot offer medical advice.
Mellanie
Margaret,
That’s unusual as many doctors will do catheter ablation up to age 75 or 80. And I know folks with stents who have had ablations. Maybe it was where your stents are located.
Have you considered surgery (surgical ablation) instead? Generally age 80 is the cut-off, though some surgeons evaluate on a case-by-case basis and have done surgery on those a few years past 80 if they were very healthy. And stents are not generally an issue either. Even pacemakers aren’t an issue.
Mellanie
Austin,
Thanks for the kind words, especially comparing our information with that from heart hospitals.
Stem cells are a bit down the road, and unlikely to help us for a while.
Enlarged atria are more of a problem for ablations than for surgery. And a pacemaker generally isn’t an issue for surgery either. Surgery has been known to reverse congestive heart failure, increasing ejection fractions to near or above normal, so a pump would be unneeded. The only issue I see is that some surgeons won’t do surgery over 80, but some will, on a case by case basis, depending on the health of the patient. It’s worth checking into.
My sense is that the 5-box surgery is not the right choice since you had valve surgery earlier. You’d probably need the open-heart version of afib surgery because you probably have scar tissue from the earlier surgery. So you’d want to find a surgeon who specializes in open-heart afib surgery (maze III or maze IV) and have a discussion about your overall health to see if it is possible.
Good luck.
Mellanie