Someday, maybe it'll change

I had another heart episode on Wednesday, my second prolonged episode of rapid, erratic beats in about 2.5 months. I was at the gym, walking on the treadmill, and I felt my heart rate surge and then stay elevated. Trying not to panic (you know, being in a public place and all), I turned off my machine, and walked out to my car, my heart beating frantically all the while. Let me tell you: it is nearly impossible to stay calm when your heart is beating wildly out of control, adrenaline surging through your body with every pump, so even though I was trying to keep my breathing steady and even, the shallow breaths were definitely taking over, throwing me in to full panic attack mode. It was cold out (hello, Indiana Winter) so there I was huddled in my car, head against the steering wheel, sobbing while I waited for Jason to get there {thankfully, when I have these episodes, I don't pass out and I was able to call Jason to let him know what was going on}. Long story short, he got there, climbed in to the car with me, got me to stop crying, took my hands, and breathed me down. In less than a minute, he did what I couldn't do in 35 on my own. My hero.

So, like I said, second time in 2.5 months. It really upset and frightened me, especially since I wasn't doing anything particularly strenuous or different {I've been going to the gym for about 2 months now and I am always careful and aware of how what I'm doing is affecting my heart rate}. The only thing that I can see connecting the episodes is that they occur directly after or during periods of stress. Thing is, they don't always occur when I'm stressed, but when they do, I'm stressed -- does that make sense? They seem like exceptions to the rule.

Anyway.

I was able to get an appointment at my cardiologist office for this morning and while the appointment was informative, we didn't really leave with concrete answers, which is frustrating but not altogether surprising. {Concrete information I did get was my bpm for those two episodes: 265bpm for Wednesday and 285bpm for the episode I had in November. Normal/average is 70bpm. *sigh* Additionally, they do believe that my episodes are caused by atrial fibrillation.} Many times, they can't tell exactly what is happening with the electrical system of the heart unless they can get in there and observe it while it's happening (via ablation) or capture it "misbehaving" while the patient is wearing a heart monitor, but I'm not a candidate for a heart monitor at this stage because for the moment, they happen too far apart (thank God). I carry a low dose beta blocker in my purse so I wanted to know when I should use it and what to expect, as I thought about taking one on Wednesday but eventually decided against it since I didn't know exactly what it did. The NP I saw today was able to answer those questions (take if after 30 minutes I am unable to gain control of my heart rate without intervention, lie down as it may cause dizziness and wait for the pill to take effect, which might be up to another half hour) and give me an idea as to what my other options were should these episodes persist and/or occur with more regularity:

1) take my heart pill PRN (as needed) until the episodes are really commonplace and I am ready to move on to a more aggressive treatment (see #2)
2) conduct an EP (electrophysiology) study where they would prepare me for an ablation (where they remove rogue/misfiring cells of the heart through a laser-like procedure, entering the body through a vein in the groin area)
3) put me on a daily beta blocker (which we want to avoid until I'm older as they do not like to give these to women of child bearing age since they have side effects and are hard on the body, and most are not "pregnancy approved".)

Of course, the hope is that they won't occur with any more frequency than they are now, and idealistically, they will happen less often than they have been. So I guess all I can do now is wait and see, which is hard and causes me anxiety because the wondering is one of the worst parts: wondering when another episode will happen, wondering where I'll be and what I'll be doing, wondering how bad it will be that next time and if I'll need to be hospitalized like I was in September of 2012 in order to get it to stop, wondering how this will continue to affect my/our life.

Can I complain for a moment? I'm going to give myself permission to let my guard down and just, well, not be strong for a minute, so please don't think less of me. Most of the time, I'm okay. I try really hard to be upbeat about my heart issues, and focus on the good in my life, on the blessings but...I miss my pre-heart trouble life more than I can say.  I hate feeling vulnerable. I hate feeling like a glass doll that has to be handled with care. I feel old. I have a pacemaker, for crying out loud. I am usually the youngest patient in the waiting room and the nurses often say, "You're too young for this, sweetheart, I'm sorry." I don't want pity, I want to be fixed. I don't want projections, I want answers. I can't tell you how hard it is to continuously work to build up my self-confidence, my self-worth and my self-esteem, cast my fears aside, and then just as often have to pick myself up and carry on after something like this happens. It's exhausting. I worry about my future constantly, because adults living with congenital heart disease (or the effects thereof) aren't all that common...yet...because babies born with more severe congenital defects oftentimes didn't survive into adulthood. Thanks to technology, that is changing. "What if" scenarios run rampant in my mind if I don't keep them in check. "Regular" cardiologists don't know what to do with me, so I have to ask for referrals to specialists who are just now slogging through research recently conducted to find answers as to why things happen to me the way they do, because I'm different than the average heart patient. It's frightening. These episodes, where I am not in control my body and I don't know what is going to happen, terrify me. I'm scared, a lot. And I wish so much that I didn't have to worry about this, especially at my age. But, there is no sense in dwelling on those feelings because the past is the past. I have been dealt these cards and I can only move forward, not look wistfully to the years behind me. I was given this life because I can handle it. And I can. I do. But sometimes, I wish things were different. And maybe someday, they will be. That's why I'm so passionate about fundraising for congenital heart research. Without it, people like me will always live in fear about their futures. Someday, maybe situations like mine will change and I can only hope and pray the research will provide us with the answers we need to bring about that kind of positive change. Someday.

So I will wait. And work on not waiting. I don't want to dwell and obsess because it's just not healthy and such a lousy way to spend a life. I want to be present and not worry about what could happen -- what might happen -- because maybe nothing bad will happen and then I've wasted my time worrying when I should have been enjoying, when I should have been LIVING. It'll be okay. I can handle it. Know why? Because I've got my hero by my side, amazing family and friends, and because I'm a badass. Sometimes ;)