My Heartiversary

Photo by Erin at Sweet Dimples Photography

A year has gone by and I'm still here. One whole year. It seems impossible. In the beginning, I really wondered if I would see this day. Every day was (and is) a struggle, waiting for the other shoe to drop. I was hoping for some improvement by now. So many people told me that they expected to see my heart function recover by now, since it was so high at diagnosis, but my heart function remains about the same (40-45%). Normal is 55-70%. I've been in a constant struggle with my cardiologist over medications and breastfeeding. Not surprisingly, there isn't a lot of research on heart failure medications and nursing mothers, but there is some. He just wasn't willing to do the research. This caused me to receive medications that were less than standard for treating PPCM. The best treatment is a combination of a beta blocker, ACE-inhibitor, and diuretics. The medications are meant to remove any excess fluid, slow down your heart, and help it pump more efficiently in order for your heart to recover. My cardiologist would only put me on a beta blocker and not the ACE-I. He also put me on a beta blocker that is more commonly used to treat pre-eclampsia than heart failure. I do wonder if I had been receiving the best treatment all along, if I'd be recovered by now. My cardiologist (and others) might say it's my own fault for wanting to breastfeed. At every appointment he would ask me when I planned on weaning. He said that by six months my baby could "just eat real food, right?" He made it very clear that he's never worked with a PPCM mom before...or anyone under the age of 50 for that matter. I also don't think he was prepared for the sobbing, emotional creature that I was, as I tried to explain my feelings to him through my choking, ugly-crying. My cardiologist and my OB suggested using a milk bank to get donor milk. Here's the thing, and I probably won't be able to relay this properly to anyone who hasn't had a breastfeeding relationship with a child, but it's so much more than the milk! Add to that the fact that I will never nurse another baby and it's too much. I felt like breastfeeding was finally the one thing I was doing right. My body had already failed me in so many ways, but this I could do.

MilkTime photos of Harper at 3mo, 6mo, and 10mo. Photos by: Brooke Collier

I recently switched to a new cardiologist out of the University of Michigan Hospital. She has done research on PPCM and it is a special interest of hers. She has changed my medications and validated my feelings. She has treated other women with this disease and is familiar with breastfeeding and medications. She has me on good medications and supports me in continuing to breastfeed until Harper and I are both ready to stop. I'm hopeful that I'm on the right track under her guidance. She has been working to increase my medication to try and slow my heart rate down, but so far we haven't been successful in that, but it's a process.

In the heart center at diagnosis (Aug. 23) and Mother's Day (May 10th)

I have found that the anxiety over having a heart condition is one of the biggest obstacles. When I mentioned this to my first cardiologist, he laughed. He could not fathom how that was possible. The slightest twinge or stutter of my heart sends me reeling. I've rushed myself to the ER or urgent care more times than I can count, where I'm usually dismissed without concern. The doctors seem to take my diagnosis in stride, saying "your heart failure is mild". Mild heart failure? Is that an oxymoron? I'm 29 years old. I have a baby who needs me. I read somewhere that if you don't recover within the first year, you're not going to. Tell me again how I shouldn't be worried. Tell me how I'm supposed to sleep at night not knowing if I'm going to wake up. Tell me how I'm supposed to explain this to my daughter one day without making her feel like she caused this. I'd really like to know.

I'm afraid to spend too much time outside if it's hot, afraid to overexert myself. I'm afraid of drinking too many fluids or not enough fluids. I'm afraid of driving. I'm afraid to be alone with Harper in case something happens to me and then she gets hurt being unsupervised. I've found an active online community of other PPCM moms which has been helpful at times, but I also find it pretty traumatizing. I try to avoid the posts as much as possible unless I'm looking for info on something specific. I understand that everyone is scared, but some of the fears I have now, I never had before I read these posts. I remember posting a question once, something like "how do you explain this to your children without them feeling like they caused this?" and someone responded, knowing I had a daughter, that "Oh, if I had a daughter, I'd be more worried that she would get PPCM when she has a baby." OK THANKS. Now I can worry about that too. I wasn't afraid to drive with Harper in the car until I read about the PPCM mom from our group who suffered a sudden cardiac arrest and crashed her car and died while taking her kids to school. The members post photos of their chests cut open and stapled back together following LVAD implantation. I see young women waiting for heart transplants. I see teenagers fighting for their lives. It's all too much to handle. I see the things these women post and I think "wow, they must be really sick, old, etc.", but then I click on their profiles and find women who look just like me with little babies just like mine. 

At cardiac rehab

This diagnosis has also been extremely isolating. There aren't a lot of 20-something heart patients. I walk into the cardiologist's office and the other patients ask me why I'm there. "You're too young to be here" they say. Yes, tell me again. They don't know how much that hurts or how much I'm secretly envying them for getting to be 60, 70, or however old they are. I just want my life back. I want to see my baby grow up. I want my baby to know me and know that I existed. People look at me and don't see a sick person. They tell me how good I look from all the weight I've lost. They don't see a person with heart failure; a person whose heart rate is constantly running at 100 or more BPM. A person whose anxiety is literally eating away at them. People think that once you leave the hospital, you're all better. They ask if I'll "get better" and I never know what to say. My heart function could "get better", but I'll always have PPCM. I'll likely be on medications and followed by a cardiologist for the rest of my life. Even with the best treatment, my heart function could deteriorate. I might need an ICD or a heart transplant one day. The longest survivor I've come across online is at 24 years, if I remember correctly. 24 years. In 24 years, I'll be 53. That's not long enough. One thing they have learned about PPCM is that younger women tend to have worse outcomes. You would think it would be the opposite, but it's not.

I've had a really hard time grasping the fact that I'll never have another pregnancy. I know I am very fortunate to have Harper, but my heart breaks nonetheless. I have a hard time watching my friends go on to have more babies, knowing I'll never get that chance. People who don't know this frequently ask me if/when I'm going to have another baby. I cringe a little and have to make a mental decision whether to give them the long answer or the short answer. When you're 28 and haven't even recovered from the birth of your first child and you're told that your child-bearing years are over, you feel it. You feel it in a way I never would have expected. Something deep inside you breaks. It is a loss that I'm not sure I'll ever stop mourning.

Some people say to just "live every day as if it's your last", but I don't know how to do that. Thinking every day is my last is terrifying. I have to believe that I have many days left because thinking anything else is completely paralyzing. I guess I live with more of a "one day at a time" motto. Every day I'm still here and not hospitalized is a good day. Every day I still have my own heart is a good day. Every good day gives me a little more hope for the next.

So at least for today, I'm still here. I've made it a year. I have a beautiful child that I will never take for granted. I have a family that loves and supports me. And while I know what the future could bring, I don't know what it will bring. If this diagnosis has taught me anything, it's that there are no guarantees. You can do everything right, follow all the rules, and still lose. There are no second-chances. If I knew that pregnancy could cause heart failure, would I have still chosen to have a baby? Probably. No one thinks "it" will happen to them. At least now I can wake up happy every day, knowing I'm lucky enough to have one more day with my daughter.

Photo by Julie Riddle

For more information on PPCM, visit www.myheartsisters.com/aboutppcm