A Year Later After My Peripartum Heart Failure Diagnosis
Celebrating Frances’ First Birthday, a year after my Peripartum Cardiomyopathy (Heart Failure) diagnosis.
As Frances’ first birthday arrived, it felt more bitter than sweet. I wish my first thought was, “365 days of loving our sweet girl.” Instead, it is a very visceral reminder that I was diagnosed with Peripartum Heart Failure a year ago and my heart has not improved. We were hopefully expectant that after the pregnancy hormones stabilized around 6 months after delivery, my heart function would go back to normal. Unfortunately, I was told as long as I need to take diuretics to keep the fluid off, I have heart failure. And if I try to wean off of them, my feet start to look like little sausage rolls.
I had made a *lot* of fantastical plans to celebrate when all of my efforts had paid off and I could consider myself “healed”…most of which involved birria ramen and commissioning custom portraits🤪.
I was hoping to commission a custom painting from Shelly Madruga art once I was healed, who makes the dreamiest portraits.
A Peripartum Cardiomyopathy diagnosis is extremely rare. I read that there are less than 1,000 people in the US per year diagnosed with systolic failure after pregnancy (PPCM), but mine is an even smaller subset with diastolic failure. Systolic is when your heart squeezes and diastolic is when your heart relaxes, in between heartbeats. My heart muscle walls aren’t relaxing well, also known as ‘Ejection Fraction Preserved PeriPartum Cardiomyopathy’ or EFpPPCM.
Considering many others who have the PPCM diagnosis require a heart transplant or don’t survive, I have it really good. I feel well enough to Jazzercise and hike without issues and generally don’t feel like I am suffering.
However, as Brene Brown says, “Comparative suffering is dangerous. Empathy is not finite. When we practice empathy, we create more empathy… Hurt is hurt and every time we honor our own struggle and the struggles of others by responding with empathy, the healing that results affects all of us.”
It is technically organ failure after all, so I am trying to allow myself a certain amount of self-empathy.
One year later with this lil nougat.
Our culture is obsessed with:
The Rocky stair celebration scene…
‘Before and After’ …
the ‘Cure’…
the ‘Secret to Good Health’…
In that lens, I feel like a failure; stuck in the ‘Before’ with diminishing hope of becoming the ‘After.’
I was ALL ABOUT “What Not to Wear” when it was airing. I remember my sister saying, “What if you didn’t even realize it, but you were living as a “Before”?!?
Everyone knows the scene from Princess Diaries where they transform Anne Hathaway into a beautiful goddess from a bedraggled schoolgirl.
The Princess Diaries is the ultimate ‘Before’ and “After’
It’s not just looks that we want to have an ‘After’ moment with. The supplement and “Wellness” industry and proof of that.
The truth is that most people have (at least) one diagnosis or chronic condition they are living with. And even people who obsessively work out and eat only raw fruits and veggies are still not immune to disease and I’m sure they don’t feel perfect. I’ve heard many people share about how they HAD struggled (past tense), and there’s no shame, but usually it’s from the perspective of “and I lived through it and it was such a hard time.”
Personally, I don’t like to ‘complain’ and it feels odd and uncomfortable to just say, “this is my life now and it’s really hard and I don’t know if it will ever be better but I sure have been putting in a lot of effort.”
I literally stopped my car to write down this quote from Season 3 of the Podcast ‘The Dream’: “We live in a meritocracy. And that capitalism is a reward system more than anything else. The people who work the hardest … should reap the biggest rewards. Wealth and health should be bestowed to those of us who believe we are putting in the most effort” (JaneMarie).
Results get praise and encouragement.
Why can’t I be happy that I feel well, thanks to taking multiple medications per day? Our culture would tell me that if I am NOT getting better, I am not really “doing what I need to do” or haven’t been working hard enough to get to my ‘After’ moment.
The reality is that I have known the exact sodium content of every single thing that I have put in my mouth for the past 365 days. On the rare occasion that I am eating out or someone else has made the food and I don’t know exactly, (after googling) I will eat a very small amount and have basically no sodium the rest of the day. I am also limited to 1,000ml of fluids per day. In addition to taking care of my 3 kids and working part-time as an Oncology Nurse, I carve out time to go on hikes and to Jazzercise class.
I am certainly not perfect in any meaning of the word, but I have been working extremely hard.
It can be normal to have swollen ankles after delivery, but it has also was a sign of my heart failure.
10/29/22:
Exactly a year ago today, I had trouble sleeping the night before. When laying down in bed, it felt like pressure on my lungs. All night long I felt pressure. In the morning my heart rate was 30 and it sounded like wet crackles when I breathed out (I could hear them with my mouth open).
My blood pressure was high and my heart rate stayed 30-40 beats per minute all day long in the ER.
Baby Frances was allowed to by my visitor while being hospitalized for Peripartum Cardiomyopathy.
After the urging of my friends from nursing school, we went to the ER and I figured that I would just get checked out and they would find a blood clot and send me home on lovenox injections. Frances counted as my ‘one visitor,’ but because I was breastfeeding, an adult also had to be there to take care of Frances, so technically I got a bonus visitor (what a relief).
After hours in the ER and doing a CT scan, I was admitted to the hospital and moved up to the Telemetry Unit. The nurses, were so kind and gentle and excited to have a Baby Guest.
As I tried to sleep at 0300 in the telemetry unit, my nurse came in, woke me up and placed defibrillator pads down on the computer next to me. I asked if every patient was required to have defibrillator pads in their room and he said, “no, just you.” He explained all the staff was freaking out that my heart rate was just hanging in the 30s and they called the cardiologist, who told them to have the defibrillator pads bedside. I said, “okay,” clutched my C-section incision and rolled over to my other side with BIG eyes, envisioning them shocking me like in the movies.
I didn’t get much sleep that night if you can believe it. The hospital would not give us any formula (when we begged for formula, we were told, “she’s not our patient” and that my husband could take her and leave to get formula. Except it was 0400am). Frances cried on and off all night, hungry no doubt because I was hardly making milk with all of the diuretics I was on (they pull fluid off and make you pee like crazy). Still to this day, I can’t understand all of the managers who said “no” to giving us a 2 oz. bottle of formula for our 8 day-old. Finally, my husband waited for the on-site Newborn Clinic to open in the morning and with bleary eyes, begged for formula. Those angelic nurses loaded him up with bottles of formula and he came back to the room triumphant with a “Patient Belongings” bag filled with formula and supplies.
We both cried.
Nine days after my baby, Frances, was born, I was diagnosed with Peripartum CardioMyopathy or PPCM.
The next morning, a Cardiologist sat on the end of my bed and explained that I had “Peripartum Cardiomyopathy with Grade III dysfunction.” He said I could keep staying in the hospital, or I could go home to keep taking large doses of diuretics. He thought I had another 10-15 pounds of fluid that would come off. I remember being discharged and was so surprised but grateful I would be home for one of my favorite holiday transitions, Halloween. Every year, we go to my in-law’s home in Downtown Los Gatos, which is transformed into Halloweentown. The streets are closed and there are wall-to-wall people who also have an affinity for costumes and magic. My MIL makes a big batch of her famous soup every year. She has recently tailored it to be low sodium, so loving. This year, I’ll have a cozy, feisty one-year-old and will likely be feeling grateful, somewhat resentful, and hopeful that things will be better next year. Until then, my ‘before’ is really not so bad.
Last year I was discharged from the hospital just in time to celebrate Halloween in downtown Los Gatos.