Atrial Fibrillation and Clueless Doctors
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?
I am a doctor myself. I had a heart attack one year ago and started to get paroxysmal afib. I entirely agree with every word you said. I am suffering just as you are, and my doctors do not seem to appreciate our dilemma.
Ali,
Thanks for your comments. I’m so sorry you’re struggling with afib.
As a doctor, do you have any thoughts on why doctors don’t understand what we’re going through,or where this problem comes from (med school training perhaps)? Do you have any suggestions regarding solving this dilemma?
One afib patient remarked that if she had one wish, it would be to be cured of her afib. If she had two wishes, the second would be for doctors to experience afib just once so they could walk in our shoes. That would sure change how doctors treat afib.
Mellanie
I just came back from my sister’s funeral. She died of a stroke caused by afib (she was not anti-coagulated, they counted on the medication working as it had for a couple of months, it stopped working, afib, clot, stroke, coma, death). She had been told, and told me “afib does not kill”. Yes? I went to an internist who said to me “afib is no problem, you just take a couple of pills in the morning and you are okay” Yes?
Clueless is a kind description. Ignorance is not only killing us, but also robbing us of quality of life.
Judy,
Amen! “Ignorance is not only killing us, but also robbing us of quality of life.” Well said!
I am so sorry for you and your family. Words fail at conveying my sympathy for your loss.
That’s why I’m blogging - I want to get out opinions that can help. We are needlessly losing loved ones because their doctors are telling them that afib won’t kill them. It’s just flat wrong!
Afib itself doesn’t kill, but the things that afib causes, such as strokes and congestive heart failure, truly can, and do, kill. As your family can attest.
Please keep sharing your story - it can help others. Thanks.
Mellanie
[…] that applies to far fewer patients than actually get the procedure. Is this just another case of Clueless Doctors who are just not aware of what afib does to us? Or are these doctors unaware of all the other […]
The cardiologist I was seeing right after being diagnosed with afib was absolutely adamant that afib was not just bad for the heart but for the entire body because of the reduced blood flow. He wanted me to keep trying different rhythm meds until we would find one that worked. Failing that, he said, he would rather see me with an AV node ablation and a pacemaker than in afib.
Now, since an AV node ablation would have put me into permanent afib, I have to believe that this doctor was totally ignorant. Clueless would be too kind a word.
Also a comment to “afib doesn’t kill.” In the hospital after my mini maze I experienced some very bad afib episodes. The first one was particularly violent and frightening. I was lying there, telling myself out loud over and over that “afib doesn’t kill” because it sure felt like I could die at any minute. A nurse overheard me and said “You’re wrong, afib CAN kill.” I answered “well, yes, from a stroke,” to which she replied that there was another way, namely that during an arrhythmia a heart sometimes just stops.
Scary!
HAVING SUFFERED WITH AF FOR 17 YEARS AND HAVE HAD 5 SHOCKS…ABLATION 3 YEARS AGO AND YES ITS BACK!!JUST HAD ANOTHER SHOCK 2 WKS AGO…FINGERS CROSSED, NOT OPTIMISTIC!!!DRS HAVE NOT GOT A CLUE…CONSULTANTS JUST WANT TO KEEP CHUCKING PILLS DOWN YOU AND TO BE GUITE HONEST THEY DONT WORK…DROP YOUR BP AND MAY SLOW YOUR H.RATE DOWN BUT THATS IT!! WHERE DO I GO FROM HERE IF AND WHEN IT COMES BACK.DRS DO NOT KNOW HOW BAD THIS CONDITION IS FOR THE PATIENT …THEY SAY!! ITS A BLOODY NUISANCE…THATS PUTTING IT LIGHTLY.CHRISTINE
Gudrun,
That is scary! So much for the belief that afib won’t kill you.
I’m sorry you had such bad episodes right after surgery while the heart was trying to heal, but am glad you came through it so well.
May you be afib-free forever!
Hugs,
Mellanie
Christine,
I’m sorry you’re suffering so much, and have for so long.
You’re right - doctors just don’t understand what it does to us. It’s far more than a nuisance!
Here’s hoping we can find you a cure!
Mellanie
Hi,
Aorta Valve replaced and a Full Maze Procedure 26 months ago, the Valve replacement worked fine apart from two extraOP’s for fluid but the Maze Procedure was a complete failure and all the Cardio says is “Oh it won’t kill you( I am on Warfarin) but now I am in Permanent A/f and sometimes I feel like just doing my self in because who can I turn to?
The tried me on all of the poisen pills,Cardioversions, none of them worked but always made me feel like crap.
It cost me $42.000 for the maze which was mot claimable with my insurance company and what gets me is the surgeon said that he had a 80 to 90 % success rate for the Maze “Yeah Right”???
Kevin
Dear Mellanie,
At least you are honest an upfront , The Cardios are “Stumped” they don’t know what to do !
Kevin
Kevin,
I’m so very sorry for what you’ve gone through. My heart goes out to you.
I’m so distressed about your failed Maze, and after all the money you spent on it, too! Was it a “cut-and-sew” maze, or did they use an ablation device?
And they say there are no other options? Heartbreaking!
Mellanie
hi!,
My dad was advised by a doctor (electro physiologist) to have AV node ablation followed by Biventricular or dual chamber pacemaker implantation. He was recently cardioverted for Af and had mild blood clot in the brain adn was treated for that. Now i am confused whether to go in for the AV node ablation or is there any way out of it…. He is not on any anti arrythmia drugs ebcause he has both tachycardia and bradicardia. Has anyone here had complete AV node ablation…. It is psychologically very distressing to destroy the AV node and be pacemaker dependednt for the rest of the life… responses appreciated..
Ramesh,
I’m sorry your Dad has afib. Please don’t let him have an AV node ablation until you’ve read our blog post on:
AV Node Ablation: Why You Shouldn’t Have It
http://atrialfibrillationblog.com/av-node-ablation-why-you-shouldnt-have-it/
For other atrial fibrillation treatment options your Dad might want to consider, please read these two sections of StopAfib.org:
Find out about atrial fibrillation treatments:
http://www.stopafib.org/managed.cfm
Find out about atrial fibrillation cures:
http://www.stopafib.org/cured.cfm
To find out more about diet and atrial fibrillation, check out the Lone Atrial Fibrillation Forum in our Afib Forums Links, or here: http://www.afibbers.org/toboards.htm
If you have more questions, just let us know.
Mellanie
Hi Mellanie,
My maze was done while my heart was open to do the Aorta valve replacement, I think they used a curved iron to burn lesions around my heart but I am not sure.
kevin
Kevin,
Again, I’m so sorry. I’d love to know more about where this was done, but I know that is very personal information.
If you’d like to share more info privately, you can e-mail us at:
http://www.stopafib.org/contact.cfm
Thanks.
Mellanie
Had mini maze done on Dec 3, 2007. Cut phrenic nerve to right diaphragm. Lost 55% of lung capacity standing, 80% laying down. Can do no physical activity. Sleep with breathing machine. Has crippled my life. A nightmare for me and my wife.
Hi Mellanie
Here is an interesting one for you to ponder, yesterday morning early about 5.30am I got up and had a cup of tea and read the paper but before I did this I took my usual 50mg Atenolol and my 5 mg Cilazipril along with my Omega 3, after about 15 minuets I felt a little strange and went and checked my BP with was very low and I had gone back into NSR but my pulse was 48 and my BP was 88/57 ! And I remember that the night before going to bed I had taken an extra 50 Mg Atenolol before retiring as I was jumping around a bit and my GP had always said to adjust the Atenolol as I needed to , this meant I had had 50mg at my usual at 5pm the night before , then the extra before retiring and then another 50mg in the morning and what I think has happened is my Heart decided it was time to go back into NSR for a time just as I had taken this extra pill but the interesting thing is that it must have been a coincidence that I converted during the night .
I am still in NSR and I rang my GP who told me not to take my normal 50mg Atenolol last night and I only had a 25mg this morning but all day yesterday I had very low BP and a very upset stomach like Dyspepsia and I am still like it today and still in NSR .
I don’t know how long this NSR will last , the last time was in April and it lasted 3 days with the same upset stomach,when I am in Permanent A/F I do not suffer this stomach upset which is odd don’t you think? Is it showing that Yes I can self convert or is it something to do with the maze 26 months ago ?
My BP at the moment is 117/73 and my pulse is 48 to 50 bpm , I do get the odd missed beats as I did in April but why the upset stomach only in NSR ???
What do you think? ……………..
P.S…….Gone back into A/fib and it is strong and driving me nuts, the Cardio sent me a letter stating that I could not have an ablation as I had already had the Maze and he said I just have to live with A/fib and I should be able to adjust with it , “Yeah Right” , he needs to experience it himself and then he might sing a different tune ???
Regards……….kevin
Drugs drugs and more drugs, stay on Warfin to stop you having a stroke and thats it. Told my Dr im coming off all drugs after my 5th shock not worked and feel much better wIth out them. Still in AF BUT CERTAINLY NO WORSE when im on drugs. BP returned to normal and don’t feel dizzy. Thats 2 wks ago…going to see consultant july 23rd …Watch this space. Christine UK
Kevin,
It does sound like having a higher dose of atenolol in your system caused you to convert to NSR, and when that was depleted, you went back to afib. The medication could be responsible for the stomach distress - we all respond differently.
“Just live with it” is not a helpful answer from any doctor, and getting that response by letter rather than personally is really sad. It sounds like it’s time to find another doctor, preferably an electrophysiologisit that can help you work through the issues and find a solution.
Unless your situation is unusual, you generally can have catheter ablation after maze surgery. I’ll be glad to discuss this further offline.
Mellanie
Christine,
I understand your frustration over drugs that don’t appear to work.
You are staying on the warfarin, aren’t you? I would be concerned about coming off warfarin unless you have zero risk of stroke. That’s especially true if you’re not on any other meds.
So what new info did the consultant visit on July 23 yield?
Mellanie
The comment posted by Dave Samuel on July 10 just broke my heart.
Here’s what he said:
“Had mini maze done on Dec 3, 2007. Cut phrenic nerve to right diaphragm. Lost 55% of lung capacity standing, 80% laying down. Can do no physical activity. Sleep with breathing machine. Has crippled my life. A nightmare for me and my wife.”
Dave and I have been talking by e-mail since, and he graciously shared some thoughts that can help others. Here are the comments he agreed to let me post:
“My message to people planning to have the mini maze procedure for atrial fib…check out the surgeons.”
“If they are only using one surgeon, make sure he has years of experience doing the mini maze, because it is a complicated procedure. And also make sure he/she has an experienced assistant. If they are using two surgeons, all the better.”
“I took the word of my arrhythmia doctor and only after did I learn that not only was there just one surgeon and no assistant, but the one surgeon did not have that much experience doing the mini maze alone. In the end, that mistake will cost me my life.”
“The procedure is a good one, and sometimes the only option, but be cautious on who does the surgery. Find out (1) if they have lots of experience, and (2) do they use two surgeons or at the very least, one surgeon and one experienced assistant.”
Dr Dave Samuel
But there is wonderful new news - he is considering surgery that may greatly improve the situation.
Dave, you’ll be in our thoughts for a successful surgery.
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