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| Photo by Heather Cisler |
My next cardiologist appointment is in a few days. I feel like I've been holding my breath since my last echo in June. I'm trying not to get my hopes up. I've long since given up the hope of the quick recovery that everyone was expecting in the beginning. The pessimist in me is yelling "see, I told you so!" But, here we are at 16 months post-diagnosis. I've made it long enough to see Harper learn how to pick her nose, so that's something to celebrate.
There has been some published research on PPCM that has come to light over the last few months. The first one was a study of 100 PPCM patients and their progress followed over a one year period. This is huge for us. The thing about rare diseases is that it's difficult to find anyone who matters (i.e. foundations with money) willing to fund the research. It's also difficult to find enough patients to make the study statistically significant. 100 patients is still a small study, but it's something. The purpose of this study was to evaluate outcomes and likelihood of recovery or major cardiac events by one year post diagnosis. Coincidentally, this study was released in August 2015, one year since my own diagnosis. Although, if I place myself in this study, I don't fit. The study indicates that 72% of the women recovered to 50% or greater left ventricle ejection fraction (LVEF) by 12 months while 13% had persistent severe cardiomyopathy, 6 of which died. The strongest association with a lower LVEF at 12 months was race (black women). Here's a link to the abstract of this study.
So where do I fit in? I have neither recovered nor had a major cardiac event. The study indicates that the probability of recovery in 12 months exceeds 90%. Again, I don't have any answers. Is it my own fault? Was my diet wrong? Did I not exercise enough? Did I trust my first cardiologist too much? Was it the lack of appropriate medicine during the first year? I guess we'll never know.
The next study to be released was regarding a genetic link to PPCM. When I last met with my cardiologist, she pretty much told me that it's not a coincidence that my brother and I both have cardiomyopathy. The paternal side of my family is riddled with cardiovascular disease. I indicated this on my health history documents while I was pregnant, but clearly no one thought to look into this. If only, if only... So basically, it goes like this, if we have a genetic predisposition for cardiomyopathy, pregnancy triggered it in me. My brother's was likely triggered by heavy substance abuse. But I'm no doctor. We just really don't know. So much is unknown. This study goes on to describe the specific genes linked to cardiomyopathy. I could be genetically tested for the faulty gene(s), but what would that do? I guess it's probably better to know, right? Knowing won't change anything anyway. Better to know that Harper could have it so we know what to expect. My brother is doing fine, by the way. He too has not suffered any major cardiac events since he left the hospital almost 11 years ago. Here is an article summarizing the study.
It's encouraging to see that more research is being done and that more awareness is being spread. I wish I knew how to get people to pay attention. I guess that's what happens when something bad happens to you. Suddenly all those causes you never thought twice about start to matter. Is it a coping mechanism? You have heart disease so now you're all, "We must make shirts and organize walk-a-thons"! Anyway, I contacted the local American Heart Association to see what I could do and they said they're always looking for presenters. Yeah, nope. Unless they want to watch a live demonstration of an anxiety attack and/or ugly-crying, they can count me out. I'm more of a "let me write an article and design a bumper sticker" kind of volunteer. I guess they do an annual heart walk or something. Does every cause have a "walk" these days?
I did send an email to the hospital about my experience, explaining how my symptoms were dismissed. I said that I hoped more education could be done within the OB/mother-baby unit so this doesn't happen to someone else. They responded that they were sorry and that they'd "look into it". I'm sure they think I'm going to sue them or something. We'll see what happens, if anything.
So for now, we wait. It's been 7 months since my last appointment. A lot can happen in 7 months. Harper had just started walking 7 months ago! Now she's practically a teenager.
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| June vs. January |
I'm trying to figure out how to be okay if the numbers come back the same...or worse. A lot of people have said "don't worry about the numbers, worry about how you feel!" I don't know what kind of Oprah special nonsense that is, but I trust in numbers and facts. If the numbers are bad, you're not doing well, regardless of how you feel. Call me a cynic. The numbers (ejection fraction) are how much blood your heart is pumping to the rest of your body.
Over the last 7 months I feel like I have started to regain some sort of confidence in my body. Confidence that I'm not going to drop dead while buttering my toast. Of course, there are still those moments. Those moments that knock the wind out of me. Those moments when I feel my heart beat...pause...and beat again. The split second where I think "well, this is it". Those nights where I can't sleep because my heart is racing. The moments I question whether I have enough time to call for help. Those days when I try to memorize my daughter's beautiful face, in case I never see it again. I wonder if my life was worth it. Did I love her enough? Will she remember me?
I know I've said it before, but I have to believe I'm going to get better. Maybe that's just human nature, our biological inability to comprehend a world in which we don't exist. We are driven toward survival. Maybe it's the only way my mind is able to keep turning, some type of self-preservation against things that are too scary to think about.
I want to be able to move on with my life. I want to plan for the future without having to consider my limitations. I'm hoping my appointment will bring me some relief. I'd like to start planning for baby #2 without the added stress of my health. Surviving life with a newborn is hard enough, but to add a toddler and a bad heart to the equation, I'm not sure we would make it.
