What I Want The World To Know On My Heartiversary.

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This time of year is hard for me. Almost surreal sometimes. Life slows for a few days, as I reflect on the weeks that came after my sons birth. Weeks that nearly took my life.

I check my Facebook memories most days. I think a lot of us parents do that. It’s a window into days when our littles were a little squishier, or maybe our belly’s were round and we were awaiting our little arrivals. A window into our past. I’ve been an avid Facebook user since MySpace’s death gurgles in the mid-aughts, so I have a lot in my old news feeds.

But six years ago, this week, it was silence.

Because 10 days after my sons birth I went into heart failure and was admitted into the hospitals cardiac unit. Away from my Wee Man. Away from my family. Sharing a room with an old woman who had sundowners and was terrified of the sound of my breast pump.

I still feel a lot of anger towards that time. Maybe it’s hardening into bitterness. And I need to let that go or use it to fuel change somehow.

But I was misdiagnosed at every turn.

I felt sick within hours of my sons birth. And I had chest pain. Instead of an EKG I was given a soda, ” to help me burp.”

I was kept an extra day for observation because I felt fluish, and after a c-section that’s no small symptom, but my OB left for vacation, and I was assigned a new one, and released with no further testing.

At home I bloated. Nothing fit, not even my ample sized maternity clothes. My stomach and face and arms swelled, but I wrote it off. I felt incredibly tired. More tired than I ever felt.

I remember handing the baby off to my husband and mom and taking a shower. I sat down and as the water washed over me, I felt like I was dying. I breathed in and out deeply, assuming it was anxiety, but my breathe bubbled in my chest. On every exhale it sounded as if I was blowing bubbles in my lungs. Suddenly I was terrified, but too tired to do anything about it. Raising my arms over my head took tremendous effort. Eventually my husband came to find me, assuming I needed help standing after surgery. And I assumed again that’s all it was.

That night I couldn’t sleep. When I laid flat breathing it sounded like swimming, and I was suffocating. A heaviness descended on my chest. But it had to be anxiety.

Until it knew it wasn’t. I woke my husband up to ask of he could hear me breathing. He mumbled, exhausted and said he was sure I was fine.

Because no one expects heart failure in a healthy mom a week after giving birth.

Then the headaches started.

As a life long migraine sufferer I can attest, that the pain was horrifying. I’ve never felt such pounding. I remember lying on the couch, with my little man cooing gently on my chest, unable to move because of the pain. It made me sick. I had to ask my husband to take the baby.

I went to lay down again. Propped up this time so I wouldn’t suffocate.

After a few days of this, I decided I needed Dr. Google. Usually I shy away from googling symptoms, but I was scared, and tired, and knew it couldn’t be in my head, so I googled anyway.

I searched watery sound breathing, and heaviness on chest. New heart murmur. Head pain postpartum.

The first result was postpartum cardiomyopathy, PPCM.

I had every symptom. There was a self test and the American Heart association had a list of symptoms. I scored high.

And then I felt intense and horrifying fear. But also, an out of body peace.

I knew I was dying. Without a doubt now. I felt it. And I started making peace, even as I panicked. It turns out this is a common cardiac symptom too.

So I told my husband. We called my mom to come over. I said goodbye to my two year old and newborn. And I left for the E.R.

I told them mommy loves them. I told them no matter what happens, I’m so glad I got to be their mommy. I kissed my daughter and nursed my new son just one more time.

And I left.

Only, the hospital was sure I didn’t have PPCM. It was rare they said. They did an EKG, that was absolutely abnormal but they ignored it. They took my blood pressure, which showed I was in hypertensive crisis.

And they sent me home anyway.

Because I looked normal. My legs weren’t pitting with edema, even though my trunk was swollen. Even though I’d gained 15 lbs since giving birth. I was petite they said, and this was all probably normal.

A blood pressure of 190/110 was probably normal. Or at least, anxiety and sleep deprivation induced.

So they sent me home.

Because I probably had anxiety.

And I felt defeated. Because I was dying, and nobody was listening.

I spent the next three days on the phone with my stand in OBGYN, the women’s center at the hospital and an answering services.

The tested me for eclampsia, but that came back negative. I went in for a BP check and the OB read a blood pressure of 200/120.

They had me stand in the hallway while they made phone calls.

I think God every day, I didn’t have a stroke, as a woman who had just had major surgery and was in heart failure, stood 15 minutes in a hallway.

They sent me for monitoring in the women’s center again.

My BP came down to 160/95. I was put on a weak blood pressure medication at its lowest effective dose.

And they sent me home.

To die.

But I thank God everyday that I’m stubborn. And I know my body.

And that night, after another horrifying head ache, a desperate call to the on call doctor when my blood pressure spiked dangerously high again I finally decided I was going to fight.

I refused to believe that I was okay. That this was anxiety.

I was coughing up fluid now.

I couldn’t wear my bra.

I couldn’t walk across the room.

So we put in another midnight call to family. And I went back for my third ER visit in almost as many days.

Only this time I told them I was positive I was in heart failure.

I demanded an echocardiogram.

I told them hell yeah I was anxious, but I was also dying too.

And for once a doctor looked at me.

And she looked at my labs.

And now my cardiac enzymes were all elevated, indicating my heart was damaged.

Now I was completely unresponsive to any first line blood pressure medication they would give a nursing mother.

Now I had gained 30lbs since having my son.

So I was admitted. But the thing about being admitted to a hospital in October is it’s flu season.

No babies allowed.

So, after begging to nurse my son one more time, and a long pharmacological consultation, because ace inhibitors, beta blockers, diuretics and radio contrasts from my many ct scans are all contraindicated for breastfeeding, we had to decide if it was safe.

And then I was wheeled up the cardiac unit.

And I stayed there for a week.

Because when I had my son, my heart grew too big. I joke now that my love for him was so enormous, my body couldn’t handle it.

I was diagnosed with postpartum cardiomyopathy the next day.

They had caught it early, my ejection fraction, the number that measure your hearts function, had only dropped to 40-45%. I was diuressed of 4 liters of fluid my first night on the unit.

They drained 2 soda bottles worth of fluid from my body in hours. No wonder I felt was drowning. I was.

There was argument amongst my doctors. One cardiologist refused the diagnosis saying it was too rare and I wasn’t in the ICU. My EF was too high. Another said I absolutely had it, my cardiac enzymes were incredibly high and my heart was visibly enlarged and showed “remodeling” a fancy term for damage.

I was sure if I had waited another 24 hours, I would have been in the ICU. And I was thankful I had met with Dr. Google, that I was directed to the American Heart Association, and that I knew what tests to demand.

Either way it didn’t matter. I was put on a cocktail of cardiac drugs that meant I had to pump and dump. I was told to stop nursing. But I’m an obstinate head strong girl, and demanded to speak with a lactation consultant and pediatrician.

It was decided if we could get things under control before discharge, we could attempt to switch to breastfeeding friendly options.

So I set my timer. And I pumped every two hours. My nurses disagreed with my choice. But I was determined.

Even though my pump made the poor old lady I shared a room with cry. The nurse would have to come in and help her. I felt tremendous guilt, but I needed to do it for my son.

And then, they would come in and measure what I had pumped, because when you are a heart patient, all fluid out is measured and charted, and then they would dump it down the sink.

Devastating in those early days.

I missed my son. I missed my husband who was caring for my son.

I missed people. I was very lonely. I spent most of my admission alone, because I was worried for my son and daughter. I sent all well wishers and helpers there, to my home.

In hindsight I wish I’d have had someone sit with me.

I stayed off of social media, mostly because I was too exhausted. I was in an out during my time in the hospital. My life was measured in two hour increments. Two hour reminders I had a new son at home, and I needed to see him. I had a two year old wondering where who mommy went and who this little baby was that took her place.

Visiting hours were limited. And no overnight guests were allowed. And that was the hardest time for me.

I was still postpartum. So I had to ask for things like pads and mesh underwear. I still needed pain meds for my c-section because it turns out recovering from major surgery is even harder when your heart isn’t working right.

I was counseled about low sodium diets and given grisly statistics about the 10 year survival rate of CHF- congestive heart failure patients. Spoilers, the long term outlook is grim.

But PPCM isn’t like CHF, even though it is heart failure. Many, many Mamas make full recoveries. They wean off of medication, they live full long lives.

But that wasn’t shared with me. And I was forced to find my own support and information. Just like I had to find my own diagnosis.

Which devastates me even now. Because it shouldn’t be that way.

Maternal healthcare in the U.S. is atrocious. It’s the most dangerous developed country to give birth in. And 3 times they missed it.

They missed it 24 hours postpartum when I had a new heart murmur and chest pain. They missed it again and again and again.

Women are more likely than men to be misdiagnosed with heart disease, and it takes longer on average to diagnose women with cardiac issues too.

And time is everything.

Because we are viewed by the system as anxious and emotional.

Because the systems is broken.

I was discharged and finally got to go home to my little man. I nursed him right away, having been switched to the friendlier meds 24 hours prior.

But Mamas know best, and the moment I held him I knew something was wrong.

8 hours later my son was in sepsis from a UTI. And I was never more sure of my choice to continue nursing.

He made a funny sound. A grunt when he breathed. Like pain. I looked that up too, and instantly recognized it as distress when I saw a video example.

My little man had a fever.

And the circus began again.

But I wasn’t afraid of hospitals anymore, or of doctors. My timidity died on the cardiac unit. There was no wavering. We took him in to the children’s hospitals and from there we spent a week on the pediatric unit.

But that’s another post for another day.

I have two weeks missing of Facebook memories, because six years ago, I went into heart failure and then my son went into sepsis.

It changed a lot for us.

I was told not to have anymore babies.

God surprised us with our Marigold, 22 months later. Our bittersweet last child.

Because I developed liver complications and had a mild heart relapse with her, I was told another birth might kill me. And 3 specialists told me to tie my tubes.

So I did.

And I’ll never forget the moment they did it. Marigold had been delivered, and was being handed to her Daddy. They found each ovary. The digging was intense pressure but not pain. I heard the snip as the OB told me what he was doing. Then a humming sound of a machine that cauterizes as well. Cut and burnt And I smelled in the smoke of my burning Fallopian tubes the loss of the future babies I wanted to so badly.

And I often wonder if you can grieve someone who never even was? The promise of a person?

A son or daughter that I knew was meant to be mine somehow, just gone in the smoke.

No more kicks and goldfish flips in my belly. No more nursing. No more baby coos and blinks and wondering if they have mommy’s or daddy’s eyes.

There is an echo in my home, a silence from what will never be.

and I smelled it and heard it in the smoke.

And he closed me up. And that was it. I had a new baby to love now. A newborn girl who shouldn’t be. And a complicated postpartum to navigate.

Bittersweet Marigold. Our last little one.

I’ve had to put these years behind me. And it’s hard sometimes. It’s hard when you want another baby, but your heart can’t take it.

It’s hard not to feel like a failure. Why can’t my body be different?

If children are a blessing and a heritage from the Lord, Oh Father God why can’t I have any more? What did I do wrong?

My body has changed now. Colds and flues spike my blood pressure. Medicines make it rise too. My medical charts and histories are a lesson in what not to take if you are prone to blood pressure problems.

I have valve problems and palpitations that weren’t there before.

And each month I get a period that feels like an insult.

What’s the point? If I’ll never carry another child.

So each October, my newsfeed grows silent. Because I didn’t document that time. I was too sick.

It’s reminder of my Heartiversary. My survivorhood. But also of my loss of fertility. The ending. A mourning and a celebration. I lived. But there was a cost.

A cost I still wrestle with in a culture that struggles to value motherhood and children.

Because I have 3 healthy kids. I survived. What more could I ask for, I’m always asked.

It’s selfish to wish and tempt fate.

What I asked for was God to take away my desire for babies.

Or to heal my heart.

And neither has happened.

And I’m learning it’s okay. It’s okay to be angry and sad and hurt. It’s okay to take this week, this silence, this remembering, this time for myself every anniversary.

And it’s okay to love God enough to say, not my will, but yours and still leave room for sadness.

I don’t know why this is my cross.

I don’t know why my heart grew faint and weak.

I don’t know why my womb was closed.

But I know that I survived, by the grace of God. And he is still good.

Even in the silence and the hurt. He is still good.

Every monthly reminder that my womb is now closed I am infertile.

He is still good.

Every new baby I’m blessed to snuggle, but isn’t mine.

He is still good.

When my 8 year old asks if I can’t have another baby.

He is still good.

When she asks if all mommy’s get sick like I did when they are pregnant.

Still good.

I want the world to know that postpartum cardiomyopathy happens, it’s treatable, and it leaves devastation in it’s wake.

It leaves its marks on mother’s, even when they recover.

and it marks our families too.

It’s brutal. It’s cruel. And we deserve better outcomes.

And sometimes, I fall apart because it took something precious from me; my fertility, the future of my motherhood.

But God is always strong enough to hold my pieces, even when my heart is not.

This year, marks my 6th year as a heart failure survivor. And I want the world to know, so another mother isn’t misdiagnosed like I was.

Our pregnancies matter. Our hearts matter. Our stories matter.

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One comment

  1. Thank you for this. I am a 10 year Peripartum Cardiomyopathy survivor. You two hours on and off with your son reminds me of me then. I slept every two hours. That’s all I could stay awake. I missed so much of his frost three months. Thank Heavens I took pictures. Now I have started a Nonprofit called Save The Mommies to try and help keep any woman from dying or being blindsided by this condition. DeAnna Stewart

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