Didn't this whole thing START for Valentine's Day last year ? (Picture: eternalspiralbooks.com) |
If I can spare even one person from the awful week I have had, then that would be a lofty and worthy plan. As some of you know, I developed an occasional and episodic atrial fibrillation about a year ago, which troubles me for about an hour every other month or so. Atrial fibrillation is the most common of heart rhythm disturbances, and since in a-fib the heart is filling and emptying inefficiently, it predisposes sufferers to throwing clots and having strokes. Improperly treated a fib can also lead to a remodeling of the heart muscle, heart failure and even vascular dementia. Since statistically women with a-fib fare in the long term much worse than men, a cardiac ablation should probably eventually be undertaken. My interventional cardiologist is a friend who is one of the top in the country and possibly the world in his specialty. Sadly, our knowing him was not enough for me, to recognize that my youngest son would develop a heart rhythm disturbance, and pass at 12. It was enough to have him diagnose and treat my eldest son with a cardiac ablation. My eldest son no longer experiences a-fib.
About two weeks ago I had a decided uptick in my asthma. Asthma seems to lead to atrial fibrillation, at least for me, so there is great interest in controlling this. I have a great allergist immunologist who has provided both a bronchodilator which will not race my heart, and an inhaled steroid, both of which are given via nebulizer every few hours. This should have been enough to manage the asthma. The allergist-immunologist was quick to tell me that he could not give me an oral steroid because it would complicate my case. Recently, one of my son's doctors expressed that she thought our entire family may have Gitelman's Syndrome, which is an issue in which we have trouble properly regulating potassium, magnesium and other electrolytes. Tell us something we don't know, we said. We almost always have abnormally low electrolytes during heart rhythm disturbances, and this is why these are supplemented now.
A few days later when I was a bit worse, I wound up at the emergency room in a city far away in the middle of the night. The ER resident physician saw nothing else to do but start me on high dose oral steroids (prednisone) for the asthma. I explained that the allergist had been reluctant because he felt it would complicate management of some other issues, but he assured me that this was all we could do. I had three days of glorious relief and energy as I took the high doses. I expected to feel badly when they were abruptly discontinued, however I did not expect to have my heart forget it's normal rhythm ! I fell into a-fib rather easily just after missing what would have been the fourth day of high dose steroid, had it been ordered that way. I took the emergency med which converts me in an hour, only to find it having a difficult time doing so. I eventually converted to a regular rhythm, but felt awful, and retired to bed. The following day, I flipped right back into atrial fib at the first opportunity. It seems the allergist-immunologist with forty years experience was right. Oral steroids might benefit asthma, but they complicate rhythm disturbances when they are withdrawn. Apparently, when I looked it up, the mechanism is unclear, but the potassium movement within the cardiac cells is changed by the steroid and this make equilibriation afterward challenging.
So, late last night I spoke to the partner of my friend the cardiologist. He reiterated this, and told me that for a few days, I will need to take regular doses of the drug which ordinarily calls me back to a regular sinus rhythm. He didn't think this was truly an indication that my rhythm disturbance issue has worsened, but that the steroid complicated its treatment, and will for a time.
I know atrial fibrillation is a familial issue for a number of us in our family. For someone as young as myself to be troubled so consistently by this is concerning. As time goes on, it seems less likely that I will be able to avoid a cardiac ablation. I am also unable to travel or fly until we have a better resolution to this issue.
There is a great book on a-fib for both those who experience this, and for any healthcare worker, physicians included:
"Beat Your A-Fib: The Essential Guide to Finding Your Cure" by Steve S, Ryan, PhD"
This is an excellent book which explains a great deal. Dr. Ryan is somewhat pro-ablation, but after reading some of the statistics for those who elect not to have one, so am I.
This is his website: http://a-fib.com/
10 comments:
It sounds as if you were on cortisone, then OFF cortisone immediately. I think your friend is trying to wean you off slowly, because it's like a mule kicking you in the chest if you don't.
The ER MD is the only one who would let me have prednisone. He provided 60 mg. for three days in a row to be discontinued immediately after the third day. This is done sometimes. Instead of allowing more cortisone, the interventional cardiologist is giving me Flecainide 300 mg. a day for several days to try to stop the reactionary a-fib. I wish they would step more carefully, but I don't order the meds !
60mg x 3 days is fairly stout. I've fone that for slightly longer then have been tapered down. When the hunger pains wold inevitably start I would have to eat immedaitely.
I am grateful that I can take the stuff although I hate it while I am own it.
**** Would the ablation cut a nerve sending a bad signal to the heart muscle?
If so, are you saying (from your post above) that you have two sources causing this? a) the misfiring from the brain-nerve misfire and b) the potassium that gets messed up by the steroid for the asthma?
Can you not stay on the drug indefinitely to maintain the proper sinus rhythm as a preventative? Also would it block the side effect of the Steroid allowing you to take it when your asthma get bad? If not what do you keep around for a sudden attack?
The Prednisone for three days was for an exacerbation of asthma. In an ablation, the internal nerves of the cardiac conduction system are mapped from inside the heart and then a drug called adenosine is given in an attempt to induce the abnormal rhythm. One it is identified, an attempt is made to ablate or cauterize the most likely nerve from which the competing rhythm arises. In theory this sounds like a good idea.
The negatives are is that you are correct, my proclivity for both fluid and electrolyte imbalance with regard to potassium and magnesium is one causation for this issue. The asthma is a secondary causation. There is also no guarantee that an ablation will work. It will however cost $67,000. before insurance pays. My son had one two years ago. It has worked for him, but it left him hospitalized for a time and with oericarditis. If I had to endure what Adam did, I would be dead !
I could take the Flecainide to help to avoid disruptions in heart rhythm for a month or two, but it never works indefinitely. True atrial fib. almost always worsens over time.
For now, the physicians are doing stop gap measures until I decide what I am willing to endure, which frankly, is not a lot.
Thank you, John. For those of you who are not in the area of Columbia, Ohio, for severe asthma, you should consult an allergist-immunologist. A board certified allergist immunologist can often control severe asthma much more quickly than a general practice physician can, even of the general or family practice physician is genuinely attentive and trying. It is simply their specialty and they have a broader understanding and broader modalities available to them for treatment of allergic issues, of which asthma is a manifestation.
Jane-Alexandra- Thank you for mentioning our book, 'Beat Your A-Fib: The Essential Guide to Finding Your Cure' by Steve S. Ryan, PhD, and our website: 'Atrial Fibrillation: Resources for Patients', www.A-Fib.com. The most important message I can share with diagnosed A-fib patients is: 'A-Fib Can be Cured!' Don't settle for a life on meds. Seek your cure.
Patti J. Ryan
A-Fib, Inc.
Patti,
Thank you for your post. Your book is the quintessential most important guide not only for the individual experiencing atrial fibrillation and his family, but also for primary physicians, and cardiologists. There is a great deal of information contained in the book which not only enhances the reader's understanding of atrial fibrillation, but aids in decision-making. A-fib should not be tolerated. It is not innocuous and it's not normal aging. Fortunately, many strategies and electrophysiologic approaches can solve this complex issue. Thanks again for your comment, and for your part in this important book.
Jane,
May I use your comments about our book in our marketing materials? (As a fellow author you know how important independent reviews can be.) I will credit you, your book and blog. Okay?
Patti Ryan
A-Fib.com
Patti,
That would be absolutely fine. It's an incredible book and has been very helpful to me personally. When I can, I would like to carve out some time to provide something for your personal stories in your blog. Best wishes to you and Steve.
I have read several just right stuff here. Certainly value bookmarking for revisiting. I wonder how much attempt you set to create any such wonderful informative site.
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