Friday, April 29, 2011

The Dancing Heart

The screaming episode of a-fib I had last night reminded me of my promise to write more about my experience with this condition in case someone is looking for more information on others experience with this condition. A couple of things I've learned living with paroxysmal (on and off) a-fib for several years and conversing with others who have a-fib.
  1. A-fib presents itself with a unique set of symptoms. Some have it and don't know it until their doctor tells them. Some are highly symptomatic when in a-fib. Some people, myself included, have symptoms that vary from mild to extreme.
  2. Better eating habits, getting more sleep and good quality sleep, and avoiding alcohol, caffeine, and cold medicines does seem to reduce the number and intensity of a-fib episodes.
So what does a-fib feel like?

I've been in the hospital twice now on an EKG machine with the doctor telling me I'm in a-fib. If they hadn't told me, I wouldn't have known. In both of these cases I was confined to bed and medicated heavily enough that my heart rate was controlled, so it stayed in a 'normal' range of less than 100 beats per minute. So sometimes it feels like nothing at all.

I should mention here that I almost constantly have something called PVC's, which are not a-fib but seem to go hand in hand with afib. These are benign (so the doctor says) but they can drive you absolutely insane until you get used to them. I have about 4000 a day, and have had them since 2005, so I guess I'm used to them for the most part now. If you ever took a CPR class, you may recall that you were told to count one & two & three & four & five... when performing CPR. Well, with PVCs imagine your heart beating along one & two & three......and then there's this pause, sometimes long enough that you feel like holding your breath to make sure you feel if your heart does beat again. And then along come four, but it isn't a normal beat. No, it is a super beat that slams so hard that sometimes you feel it is lifting you right out of the bed. If you are not extremely overweight, you can actually see that beat pop out of your chest sometimes. Needless to say, it makes relaxation a challenge.

By far the worst; however, is being here at home or in the hospital in what I call 'full-blown a-fib.' This typically occurs at night, sometimes before I go to sleep, other times waking me from a sound sleep. At first it feels like my heart is playing on the monkey bars. Remember that bar you hold on to and the flip around? Well, it feels like my heart is doing pull ups on that bar, and then every few beats it decides to turn a flip - whee! Except it isn't as thrilling to have my heart do that inside my chest as it is to have my body turn that flip. Eventually that flip changes to an irregular heart rhythm. No more one & two & three. It's like a drunken sailor is staggering around inside my chest.

Except that no drunken sailor could stagger so fast. When it really winds up, my actual pulse rate will soar up over 100 beats per minute. At about 180, I get shortness of breath and lightheaded. I use some basic breathing exercises to bring my rate down to where I can breathe again. But then it pops back up again, so time for more breathing exercises. Repeat, over and over again, until either the rate stabilizes at a low enough point that I can go to sleep; or I convert back to normal rhythm; or I decide it's time for a trip to the ER. Trips to the ER are thankfully rare, and I'll talk about why in a future post.

Oh, and once I hit that magical rate of 180 or so, another symptom develops. Some of my friends call it the 'big pee.' Yes, just at the time that my body needs me to be still and relax to lower my heart rate -- I start wearing a trail in the floor going back and forth to the little girl's room. If I hit that point, I know it's a really bad a-fib episode and I'm going to feel like h*&% the next day. Kind of like I feel right now.

The next day, my blood pressure is typically low. So I'm too tired to do anything more strenuous than operate the DVR. Sometimes I even watch the commercials because the effort to fast forward just isn't worth it. I have to psyche myself up to stand in the shower for five minutes. Trips up the single flight of stairs in our house require a break in the middle. I often get so lightheaded that I have to elevate my feet to clear the rushing in my head.

Sometimes after an a-fib episode, if I try to do normal type activities, I have a near-faint, which is an awful feeling. If you haven't had a near-faint before, for me it goes like this. First, my head starts feeling extremely full. I get very warm and slightly nauseous. Sometimes if I can get to a sitting position fast enough, it ends there. If not, then my vision starts narrowing. It's like someone is slowly covering my eyes from the outer perimeter inward, until I can only see a tiny little tunnel. And my lips get numb - yep, worse than the best Novocain the dentist can dish out. By this time my feet better be getting elevated above my heart, or I'm probably going all the way out. Lucky for me there's been someone around to help with the feet the two times it's gone this far.

So this is what it feels like to live with a-fib in my sample of one - me. Other describe different symptoms. Some choose to head to the ER at the first sign, others refuse to go to the ER at all. Well-intentioned doctors often tell us that we have anxiety we need to deal with (well duh, after what I've just described wouldn't you be a bit anxious?) or that it won't kill us, never mind the elevated stroke risk. They ignore the impact of feeling 70 when you're 45, the fear of the next episode that ruins your plans for the day, and medications that are sometimes worse than the disease.

So what are the options for an a-fib sufferer - that's up next.

Tuesday, April 5, 2011

From the Heart

I admit it - I'm a superficial blogger. I've watched with both admiration and consternation as my blogger friends offer intimate glimpses into their lives. Sometimes I've thought about sharing more intimate details, but I'm always held back by the "what ifs." Today's topic is one of those: "what if someday I'm job hunting, and my future employer finds this, and decides I'm too high risk to hire?"

No, this isn't about some wild crime spree or deviant behavior. It's about something potentially worse in an employer's (or their insurer's) mind - health. Yet I know that this story needs to be told, because there are others out there with similar circumstances, who need to hear they aren't alone.

You might recall my prior heart story. A really brief synopsis for those of you who don't want to go back to read it - I had some strange symptoms, for a period of five years or more these were diagnosed and treated as anxiety, turned out I had a hole in my heart.

Foremost among my strange symptoms was a racing, irregular heartbeat that most often occurred around 2AM, often waking me from a sound sleep. My heart rate was often over 150 (this is while lying in bed) and it felt like a psychotic, tap dancing Tasmanian Devil with really bad rhythm was inside my chest.

I now know that this was atrial fibrillation (A-fib for short). If you want more information on this condition, I highly recommend this wonderful website. If you don't, here's the short version: A-fib is the most common abnormal heart rhythm. The only for-sure way to diagnose it is with an EKG. The older you get, the greater your chances of having a-fib. It impacts your quality of life, and it increases your risk of stroke. You can 'have' a-fib without having a heart defect or any other form of heart disease.

I have paroxysmal (some of the time) A-fib. This A-fib can be elusive and rarely seems to occur when there happens to be an EKG machine nearby. But if you have a racing heart for no reason, and the rhythm is irregular, it might be a-fib. To find it, doctor's first have to test for it.

If you are a younger woman, in my experience there is a good chance of getting an anxiety, panic attack, depression, or hormonal disturbance diagnosis without any testing when you complain of a racing, irregular heartbeat. A-fib certainly causes anxiety, and it can also cause depression, and it can be related to hormonal imbalances. In some people anti-depressants and anti-anxiety medications can lessen the frequency of a-fib episodes; thus appearing to support the depression/anxiety diagnosis.

A Holter monitor is a non-invasive, relatively inexpensive test. While many report that their symptoms seem to perversely disappear every time they wear a Holter, it does provide successful diagnosis for others. It seems to me a Holter should be an obvious test choice when someone is complaining of a racing heart and irregular rhythm, despite their age or gender.

Why am I telling you this? Because in my case, earlier diagnosis might have led to less enlargement of my atria, and therefore less predisposition to continuing a-fib. Yes, even though my heart defect has been repaired, I still have the a-fib.

More on what it feels like to live with a-fib next post.....