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| Photo: Jess Stampe, Stamped in Time Photography |
My annual cardiology appointment was on July 18, 2017. As you may recall, my last echocardiogram (echo) from 2016 showed that I had fully recovered with an ejection fraction (EF) of 60%. Since then, I've been maintaining my medication regimen with the expectation for continued health. When my echo results came back from my July appointment, it showed that my EF had gone down slightly. Remember that "normal" is 55-70%. This year it shows an EF of 53% which they calculated using the Simpson's method*, which I'm told is the most accurate calculation. I've also learned that the reading from last year was an "estimate" and was not calculated using Simpson's method. The EKG results also came back abnormal, stating they cannot rule out an anterior infarction. Of course, being the person I am, this freaked me out. If 55 is normal, 53 is abnormal, and 53 is not recovered.
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| Echo summary 2017 |
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| Top EKG from 2016 (shows normal), bottom from 2017. |
Of course I shot a few messages off to the doctor's office through my patient portal asking for clarification. Much to my surprise, the doctor called me personally (usually it is her nurse who calls/emails). She told me not to be worried, that she thinks it's a solid 55%. She didn't realize I could see the EKG results and said the EKG was normal, that if there were something wrong, we would have seen it on the echo. She explained that an EKG can show abnormal for a number of reasons, like the leads not being in the correct spot. I asked the doctor if there is anything else we should be doing or could be doing. She suggested having a cardiac MRI, which could give us a clearer picture of my heart. She also cautioned that the MRI could cause even more anxiety if it shows something else. The MRI can show things such as Late Gadolinium Enhancement (LGE), which simply put, means how quickly your heart muscle absorbs the dye they use. "Late" uptake of the dye indicates scar tissue, which can mean irreversible heart damage. I agreed to go ahead with the MRI, hoping it would give me some peace of mind. A couple weeks later, I received another phone call from my doctor telling me that my insurance company denied the claim for the MRI, that they don't feel it is medically necessary. She explained that insurance companies just aren't familiar with this disease and aren't up to date on the research. I was really touched by her sentiment. She said she really fought for it and I could tell in her voice that she was actually really upset by it. It's amazing to have a doctor who actually feels like a partner in your health. She said she would try to appeal their decision, but she did not believe they would be moved. So much for having great benefits.
So now we wait (and wait). I'll have another echo next July, which seems like ages away. The scariest thing about this disease is that there is so much that is unknown. They say that if you don't have another pregnancy, they don't expect a relapse, but it can and does happen. They say that if you stay on your medications, your EF shouldn't go down, but it can and does happen. They have no explanation. The phrase that just keeps looping through my head is that the etiology of PPCM is unknown. If the etiology is unknown, how do I know that I'm going to be okay? It's hard wrapping my mind around the fact that this is my life now. I will always be living from appointment to appointment. I'll always be wondering if that sharp pain or slight twinge is about to kill me.
While all of this has been going on, Angela and I have been desperately trying to have another baby. As you know, it's not recommended for me to carry another pregnancy, although many women choose to do this and some women have favorable outcomes. To me, it's not worth risking my life or risking Harper losing her mommy. Angela has graciously stepped up to the plate. We started trying to conceive (TTC) in February 2016. Since then, she's had 5 rounds of medicated IUIs, a round of IVF, countless tests, blood draws, injections, and two frozen embryo transfers. She was briefly pregnant after the first frozen transfer, but this soon ended in a miscarriage. If it weren't for PPCM, we never would have taken it this far. We would have gone back to having me try for another pregnancy. But now we have nothing other than the $30,000 in debt (insurance doesn't pay for fertility treatment). We are uncertain what the future holds for our family. I'm hoping that our dream of adding to our family is not another thing I've lost to PPCM.
Over the last year or so, I've been trying to focus on how to live my best life possible. I have to believe that I'm going to be okay and that if I'm not, I will have lived a great life. I'm learning to take better care of my body and mind. I joined back up with the Women's Chorus, which is the most amazing group of women I've ever had the privilege to call my friends...plus the music! Music can truly have the power to heal. I'm actively trying to lose the weight I regained once Harper weaned. I'm starting to be less afraid of exercise or being active. We're joining the Y. Angela has been here to support me the entire time. She encourages me to do what makes me happy. She understands my (sometimes irrational) fears without judgement. She laughs at my jokes about "stroking out" because of XYZ.
Looking back now, the first year or two after my diagnosis was so dark; I was drowning. I had a new baby and a scary new disease. No one understood what was happening. Even now people don't know or continue to ask why I haven't had another baby. I'm trying to channel all the pain and anger about this disease into something productive. Women are still dying from this disease because doctors are unfamiliar with it and don't recognize the signs. Just because something is "rare" doesn't mean it's not important, especially something so deadly. This is inexcusable. This year we participated in the Heart Walk for the American Heart Association. I've also created little info cards about PPCM which I have been leaving around town. If I can help save a life, maybe it will all be worth it.
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| Team Heartbeeps, West Michigan Heart Walk 2017. Our little team raised $435! |
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| We sure have come a long way in three years |
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