Living with PPCM

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.

Echo summary 2017

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. 

Team Heartbeeps, West Michigan Heart Walk 2017. Our little team raised $435! 

We sure have come a long way in three years

  

*Simpson's method: Ejection Fraction = end diastolic volume minus end systolic volume divided by end diastolic volume times 100. 

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. 

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

A new baby, a new life (the diagnosis, part two)

Photo: Heather Cisler

The ambulance ride to the heart center was mostly non-eventful except for when the driver nearly crashed us through a construction blockade, not realizing the road was closed. I had to ask the paramedic to turn off the heat and he said something about how they're used to transporting old people who are always freezing. I lost track of time. It was early morning by the time I was settled into the heart center. The nurses had to check me for bed sores...standard procedure for anyone checked into the heart center. "But I'm 28" I said. They weighed me. I didn't even look at the numbers. I was feeling pretty good now that most of the fluids were gone. I was lucky to have a room to myself. I waited. I was completely alone for the first time in 9 months. My milk had finally come in and I had no baby to feed. It hurt; everything hurt. I felt hopeless. I texted our friend, Missy, who I knew worked somewhere in the heart center as a nurse manager. I said something like "are you working today? I've been admitted to the heart center and I'm terrified." I still couldn't wrap my mind around what was happening to me. Angela went home to trade spots with my mom so she could be with me at the hospital and Angela could be with Harper. The nursing staff was awesome and kind. They told me that Harper could "room-in" with me while I was there and that they would bring everything I needed. They held my hand while I cried. A doctor with a thick accent came in and lectured me about not knowing I had a UTI. She says "your urine is duh-tee (dirty), did you not feel pain?" She must have missed the part where a baby just slashed her way out of my body and that everything was pain. I felt like a UTI was the least of my worries at this point. I wanted her to leave.

I finally had an echo. It seemed to last forever and I think the girl doing the test was being trained. I kept falling asleep and startling back awake, like in those dreams where you think you're falling. I nearly hit the girl doing the echo more than once. There was more waiting. Someone must have alerted my OB because she came over to see me. I can still remember the awful look on her face. I don't know if she was just worried for me or worried that she missed something, that she let me down somehow. She told me I "looked good" (I heard this a lot during my stay) and offered me an antidepressant. We waited. Another doctor came in. This doctor again said this is something rare and serious. He said 1/3 of women will get better, 1/3 will stay the same, and 1/3 will get worse. He said I can't have another child due to the probability of this getting worse.

Angela arrived with Harper. I couldn't even look at her without crying. I felt like I had failed. I brought this baby into the world and now I was dying. I spent the next four days in the hospital. Harper celebrated her one-week birthday just a few floors from where she was born. Nurses came in to see the baby and share horror stories about other PPCM moms they had seen, thinking that would give me comfort. One nurse said that when he heard he had a PPCM mom on the floor, he was afraid to even come in because these cases are so sad, that he can't handle seeing the moms in LifeVests. Yes, thank you. Please leave.

Harper's one week birthday, back in the hospital.

I did a lot of Googling and found a lot of scary things: 50% will die, eventual heart transplants, pace makers, 10 year life expectancy, sudden cardiac arrest. I tried to stop searching, but I needed answers. I needed to know why this was happening to me. I was 28 years old. I had a textbook pregnancy. I was healthy. I didn't find any answers. I found that there is very little known about this disease and barely any quality research. I kept asking the staff why no one had caught this when I delivered and my legs kept swelling up. They just told me that it's so rare that they wouldn't have caught it, that it's normal to have swelling. Even though I said it was too much, that it kept getting worse, that I couldn't walk. I realized I wasn't going to get any answers.

My feet, before and after.

I was sent home with a large, white packet with only the words "Heart Failure" printed across the front. They told me to watch my fluid and sodium intake and weigh myself daily.  They said to follow-up with the cardiologist in about four weeks. I remember sitting on the couch in the hospital room next to the discharge nurse as she went through these documents with me. Until this point, no one had called it "heart failure" and I felt completely rattled seeing the words printed out like that. I remember thinking to myself, "what is she talking about? I don't have heart failure. This isn't right." But it was. Just over a week prior to this, I was discharging with my new baby. Today, I was discharging with heart failure...and a new baby. One of the things it says to do in this handy handbook is to "get at least 8 hours of sleep at night". Right. I guess that's one of the most cruel things about this disease is that as a new mom, you need to take care of yourself, but then you also have this tiny baby that is depending on you for everything. You feel guilty "taking care of yourself", because your baby is supposed to come first. You've been planning and dreaming about this little human for the last 9 months, making every decision with them in mind, and now you are failing. You read all the books on sleep techniques, swaddles, feeding patterns; you've got your wet/dirty diaper journal. But now, you're too exhausted to carry your baby to the nursery to change her diaper. Your heart starts pounding and racing every time you have to pick your crying baby up in the night. You feel like you're killing yourself with every hour of missed sleep. More times than I can count, I said to myself and Angela "I can't do this". Your partner also doesn't know what to do- they didn't sign up for this. You were supposed to be a team. Now they have to care for this helpless newborn and their sick, often helpless, partner.

At first, I found the low sodium diet to be completely unmanageable. They want you to have 2,000mg or less of sodium. Have you ever looked at the sodium content on your food labels? You should. Total them up for a day and see what you come up with. Before Harper was born, we stocked the freezer and cupboards with easy to cook dinners. I remember coming home after discharge and opening the cupboards, feeling completely lost. I couldn't eat anything I wanted to eat anymore. I ate a lot of cereal and low-sodium peanut butter and jelly sandwiches. Food has always been such a comfort to me and now, when I needed that comfort more than ever, it was gone.

Sodium content for 3 Mrs. T's Pierogies

I have since learned that a lot of the "statistics" I found online about PPCM are misguided and outdated. The survival rate has only been increasing with early detection and treatment, although younger women still tend to have more negative outcomes than older women. The issue is that a lot of medical professionals are still unfamiliar with this condition.  I've heard too many horror stories of women being sent home from the ER with symptoms of PPCM, having been told they just have anxiety, bronchitis, pneumonia, that they're "too young" to have a heart problem, etc. They are sent home to just get worse and worse. I was lucky enough to have a doctor in the ER that night who knew what was going on, or was at least able to diagnose me and get me the treatment I needed right away. I went back and checked all the pregnancy books that I read before delivery for any indication of PPCM, but didn't find any. The closest thing I found was a mention of "heart disease" and that if you have a history of heart disease or murmur, you should talk to your doctor before becoming pregnant. But never was there an indication that pregnancy could cause heart disease. If there was, I probably wouldn't have read it. Everyone knows that terrible things could happen during pregnancy/labor, but no one ever thinks it will happen to them. I still find it pretty hard to believe and keep hoping I'll wake up from this nightmare, but for now, it's enough to just wake up.  



A new baby, a new life (the diagnosis, part one).

Photo: Heather Cisler

On August 16, 2014, I became a first-time mom. Five nights later, I was back in the emergency room being diagnosed with Peripartum (postpartum) Cardiomyopathy (PPCM), which is a type of dilated cardiomyopathy where your left ventricle becomes enlarged and your heart cannot pump blood efficiently to the rest of your body. Your body starts to retain excess fluid and you begin to drown from the inside as your lungs become filled with fluid. They don't really know what causes it other than being pregnant and the increased blood volume and demand on the heart. PPCM is a "diagnosis of exclusion" meaning they must exclude all other possible causes for the cardiomyopathy before giving a PPCM diagnosis. There really aren't good statistics on it either; I've heard that it happens in 1 out of 1-2,000 births or as many as 1 out of 850 births. This is my story.

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Our first day home from the hospital with our new baby was August 18, 2014. The sun was shining and the air was hot. We sat on the couch as a family. We cut off our hospital bracelets and thought about our new life, our 'happily ever after'. My legs and feet, which began to swell immediately following delivery, continued to swell with fluids. I had hot flashes. There were times that I noticed my heart was racing, but I assumed it was normal. It was stress; it was the lack of sleep, the hormones. The hospital called to check on me and I said my legs and feet were still swollen. The nurse said it was normal. The visiting nurse came and I showed her my feet, she said it's normal. I could barely walk from the swelling and the increasing pain from the fluids pulling and tearing at my sutures. I didn't understand why things were getting worse instead of better. I cried constantly. Harper wouldn't nurse and screamed bloody-murder when I tried to nurse her. I cried.

We took Harper to her first pediatrician appointment and I could barely walk. I sat in the corner using all my will-power not to burst into tears while the doctor examined Harper. We went home and I cried. My heart raced. Harper wouldn't nurse and wouldn't sleep. I felt like a failure. I felt like a bad mom. I felt that I wasn't bonding with Harper and that she hated me.

On Wednesday, August 20th, we had our newborn photo session. My feet were more swollen than ever. They wouldn't fit into flip-flops because the straps were too tight. I snapped a photo of my feet and sent it to my mom. I knew something was wrong; I knew something bad was happening. No one listened. I felt like the August heat was suffocating me. My feet felt like they were going to split open and that fluid would come pouring out. It was like I was walking on water balloons that were filled with fire.

Harper still wasn't sleeping. We took shifts staying up with her all night. When I did sleep, it was upright on the couch. I blamed my exhaustion on the lack of sleep. I cried constantly; huge, weeping cries. It wasn't supposed to be this way. On Thursday, my mom came back and my cousin came over to help with breastfeeding. I couldn't stop sweating. My heart raced. Harper was able to calm down and nurse. We laid in bed and nursed. Harper fell asleep. I finally felt at peace. It seemed like things might be okay. At bedtime, Harper went to sleep in her bassinet for the first time. I fell asleep in my own bed. When I laid down on my left side, I felt like my body was crushing my heart. I felt it flopping around in my chest. I worried that if I fell asleep, I wouldn't wake up. You know how sometimes you just know things? I just knew. I was too tired to care.

At 11:30pm, I woke up. Something was wrong. My right lung felt heavy and crackled when I exhaled. It felt like the time I had pneumonia several winters ago, like there were Pop Rocks in my lung. I rolled over and woke Angela up. I told her I couldn't breathe. I started to panic. I told Angela to go get my mom. We called the on-call OB doctor (because I didn't know what else to do). He was extremely dismissive and told me to go to the ER. I started crying. I looked down at my 5-day-old sleeping baby in her bassinet. I worried that whatever I had, she would have caught (pneumonia), even though in my mind, I knew it wasn't contagious.

We knew it wasn't smart to take a newborn to the ER full of sick people, so we left Harper home with my mom. It was the most painful thing I had to do, but there was no other choice. I couldn't breathe. I dragged myself into the ER and up to the reception desk. I explained that I had a baby 5 days ago and now I couldn't breathe. The nurse called over her shoulder to someone, saying "can you take a short-of-breath?" They got me in right away and hooked me up to monitors, drew blood, listened to my lungs, my heart. My heart rate soared over 120 BPM sitting down. By this time, my lungs weren't crackling anymore and the doctor said they sounded clear. For a brief second, I thought maybe I was fine, maybe I was exaggerating, it's been known to happen. I showed him my ankles/feet. They sent me for a CT scan and then we waited. The doctor quickly returned and said something like "we think what you have is postpartum cardiomyopathy. It's very rare and can be very bad or it can be OK." He said they could see fluid around my heart and lungs and could see that my heart wasn't working properly. He said I'd need to be transported downtown to the heart center and that I'd need an echocardiogram to see how much damage was done.

He didn't need to explain any more. I knew exactly what this meant; I had seen this before. 10 years prior, my brother was diagnosed with cardiomyopathy. Cardiomyopathy meant life support and comas. Cardiomyopathy meant planning a funeral. Cardiomyopathy meant my 5-day-old baby growing up without ever knowing me. The doctor may have said something else, but I couldn't hear him. I felt numb. I crumbled. Angela called my mom and I could hear Harper crying through the phone. The pain caused by being away from her was like nothing I had ever experienced. Every ounce of my flesh was screaming out for her and at home, her little body was doing the same for me. The memory of this pain still reduces me to tears, a year later.

The nurse came in and gave me some medication, lasix, blood pressure medication. He said something about how I'll probably have to stop breastfeeding. He asked how breastfeeding was going and I explained that it was not going well. He said that was good and that now she wouldn't miss it. What I heard him say was "good, now she won't miss you when you're gone." He went on to talk about his own kids and some story about a woman with breast cancer. Luckily, the lasix kicked in so I didn't have to listen to him anymore as I hobbled to the bathroom down the hall. This would be repeated at least a dozen times more in the next 30 minutes as the gallons of excess fluid were finally freed from my body. After my last trip to the bathroom, the paramedics had arrived to transport me down to the heart center. As I approached the room, I could see my nurse talking intently with the two paramedics. I heard the words "worst case scenario". They stopped talking when they saw me. 10 years prior, when my brother was transported from Lansing to Ann Arbor for his heart, he arrived on a ventilator. They couldn't find a vein in his arms so he had an IV port sticking out of his neck and one out of his foot. These were the images I recalled as they buckled me onto the gurney, my half-pregnant belly sticking out over the straps.

To learn more, here is a brief article on PPCM.