By Clare Almand
27 Sep

Can We Just State the Obvious? CHD Stinks.

Wednesday, September 27, 2017

It’s funny that four years ago, I stopped writing posts for the ACHA Blog because I’d run out of topics. My health was stable and I had no new angle or insight on my CHD experiences that I hadn’t covered or had been covered by someone else. And there were no new problems to report. It’s funny because, guys, that is sooooo over! My heart is back to being a huge jerk.

Last September, I started getting winded when I walked up the stairs to my apartment. Sometimes just walking down the street made me stop and catch my breath. This kept happening, but because I’m always afraid of overreacting, I thought maybe it was in my head. My roommate and I were moving into a new place and packing and unpacking was stressful, so I believed the stress was manifesting itself in this weird way. I brushed it off.

Over the next two months I ended up having a few bouts of atrial fibrillation, surgery to replace my ICD, as well as an ablation to curb the a-fib. After getting those issues sorted, I found that in December, I was still having issues going up stairs and I no longer had the energy to exercise.

My cardiac team started tweaking my medication, which helped initially. It actually helped a lot. So much so, that I thought my problem was fixed. (Hahaha. Fixed. Why don’t I know better?)

But a pattern emerged. The increased dose helped for about two months, but then the symptoms would return. In early February my meds had to be increased, then again in April and then again at the end of May. The only possible cause of these issues they could see was a tiny leak in my mechanical valve. A leak that in October was deemed too small to even fool with while I was having my ICD replacement and ablation. Even though the regurgitation sounded really bad, they told me, the hole didn’t look big enough to be causing the symptoms I was experiencing.

I should also mention that this back and forth with doctors and medication was taking a serious emotional toll. I was getting more and more depressed with every increased dose. My heart was working so much harder that even though I barely had the energy to move, I was losing weight. I looked weak and pale. I felt hopeless and helpless and uncertain how much time I had left. But now it was June and the medication had been quadrupled in six months and my symptoms were back again. It was time for Plan B.

So my cardiac team went after the tiny leak. I was put on the schedule for a cardiac catheterization. Both my parents flew out from Virginia to take care of their 30-year-old heart baby (my apartment has never been this clean). And I prepared to have a procedure that I really didn’t think would work.

I was half right. The valve leak was not the problem. While working the guide wire towards my aortic valve, the wire unexpectedly slipped into the right ventricle. When that happened, the interventional cardiologist found a significant hole (he called it a “communication”) between my right ventricle and aorta. For whatever reason, they couldn’t see it on an echo or a transesophageal echo. It was pure happenstance they found the real problem while they were trying to fix something else.

I am not unaware of the luck that I’ve had with my CHD. I’ve had amazing doctors who kept working at making me feel better. I’ve also had an amazing support system. I received so many texts and phone calls and messages from family and friends wishing me luck before and checking on me after my procedure. I am so grateful for the love and the luck, which always seems to follow these speed bumps.

I’m doing much better now. My color has come back. I’m gaining weight. I’m lifting weights and climbing up multiple flights of stairs without stopping. My dose of that medication has been cut in half and is still decreasing. I feel like myself again. Until the next time my heart decides to just create another new hole and I have to do this all over again. Sheesh.


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