the new day

photo: Heather Cisler Photography

 
I realize I'm long overdue for an update. It's getting much harder to find the time or energy to do much of anything outside of chasing a toddler. We're coming up on the "terrible twos", but I feel like we've been there for months now.

My last cardiologist appointment was January 20th which was a Wednesday. They did an echo and drew labs. The doctor said everything looked good, but I wasn't about to get my hopes up until we got the final report. Unlike at my last cardiologist where he just glanced at the echo and told me the results right away, this cardiologist sends the echo off for a thorough reading. I had to wait ALL weekend until I finally got the results in my email on Monday morning.

When I got the results, I didn't even know what to do. Have you ever received really good news and had no one around to tell it to? I was home alone (well, with Harper). I called Angela's phone, no answer. I called my dad's phone, no answer. My mom's phone...you get the picture. So then I resorted to texting. I didn't want to text my news, so I sent the ominous "call me" text that everyone hates. Finally my dad called back and I was able to share the good news. It seemed surreal. The brief message from the doctor seemed so clinical and matter of fact. I think they could have at least thrown in an exclamation point or smiley face. 

It has taken quite a while for the news to sink in. Recovered! My ejection fraction (EF) is at 60% (normal is 55-70) and the diameter of my left ventricle (LVEDD) is 4.7cm (normal is less than 6). I don't know if I'll ever completely feel alright again. Physically, I feel pretty great, but I think the emotional damage will take a while longer. I still worry all the time, but now I can at least counteract my anxiety by telling myself that I'm "recovered". I can go back to thinking that I'm overreacting, like normal. I'm still hyper aware of everything my heart is doing. I still feel the weird beat every now and then, but it doesn't make me panic as much now. I can do yard work and go for a walk without wondering who will be around to save me. It's an amazingly liberating feeling. 

I no longer feel like my immediate future is at risk, but I still wonder what this disease will mean for me long term. How many good years will I have before I start having problems again? For some people, the recovery is only due to the medications. My doctor feels that I should stay on my medications for life partly due to the length of time it took me to recover. But then, if I'd had this doctor all along, I don't feel like it would have taken so long. But there's nothing I can do about that now. I am fine taking medications for life. I can deal with the minor side effects. I've heard of so many women who have been taken off their medications and then relapsed. Once you relapse, it's not as easy to get your heart function back up again. I'll deal with the three pills a day and the $30 co-pays if it means I get to live. 

I've never been happier to be so normal.

Probably the biggest thing I have learned from this whole nightmare is that so many things just don't matter. What matters is being with the people you love. I don't need the biggest house or the nicest car, I just need a heart that beats and people to love. The things I used to care about two years ago seem so silly to me now. I feel as though I've been completely transformed as a mother, as a woman, as a survivor. I take nothing for granted. Every day, when Harper throws her arms around my neck and yells "mommy!" I know that all the pain and the fear have brought me to this point and I feel like everything will be okay. 

 

Harper will be 21 months old next week. Every day she blows me away with her wit and personality. I still dread having to tell her about this in the future. Not only do I have to explain what caused it (my pregnancy with her), but that she could have it too. She is at risk of developing PPCM herself if she gets pregnant. It kills me to think about her having to go through this fear and anxiety. I also don't want her to ever feel like this is her fault. She has, if anything, helped me to grow and heal.

So for now, I'm going to enjoy my life and worry about the rest when it's time. I will keep telling my story until everyone knows about PPCM. I am one of the lucky ones who was diagnosed right away and has reached a point of recovery. So many women are not as lucky. There are too many doctors and medical professionals that don't know about this disease and think we are "too young" or "too healthy" to have heart failure. PPCM can happen to ANY mother. If you are old enough to get pregnant, you can get PPCM. It also doesn't always happen with your first pregnancy, like mine did. Listen to your body, trust your gut. Don't be afraid to look for a second or third opinion. I believe that my second opinion doctor saved my life. 

I had the amazing opportunity to share my story and participate in the 4th Trimester Bodies Project. Check it out!

the waiting game

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. 

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.