Story #98 - Victoria, Reno NV (USA) - Gestational Diabetes, Postpartum Preeclampsia, Anxiety, Maternal Mental Health Advocate & The Cuff Project
I got pregnant in September 2018 and gave birth to my daughter in June 2019. My pregnancy was considered "geriatric" — what a term! — and I suffered from gestational diabetes and was insulin-dependent. I also tested GBS positive, so I knew that I'd have to get to the hospital as soon as my water broke. My labor was long but fine, and after 30 hours, I gave birth to a perfectly healthy baby girl.
Two days after her birth, I went back home. Every time I breastfed, I had waves of nausea and pain. Every. Single. Feed. I also started swelling. Like a lot. I remember taking a picture of my feet and posting it on IG with the caption, "Jessica Simpson's feet." I saw a lactation consultant five days postpartum and spent two hours with her: nothing was coming out, despite having a breast pump on both breasts. When my baby didn't have a wet diaper for 24 hrs, I knew I would never be able to feed her exclusively with my milk and would have to introduce formula. It was not a pleasant decision, but I had tried and didn't feel shameful for sending my mom to Target at 11 pm to get some. The perks of being an older mom I guess.
Soon I realized the swelling was not normal. The days after I came back home, I noticed that I had gained weight quite inexplicably and mentioned that to the lactation consultant. You think that it's normal to feel like shit after giving birth and be swollen from everywhere, but I didn't look healthy at all. The consultant confirmed that it was not, indeed, normal and asked me to call my doctor. She thought I might have some retained placenta or postpartum preeclampsia.
I called the hospital, and they told me to come in on the following day. When I got there, they checked me and told me everything was fine. They also gave me antibiotics, saying I might have an infection. My blood pressure was elevated compared to my usual numbers, but it was just under the level for being admitted. The doctor simply told me to call back later if I didn't feel well.
Two days later, I felt even worse, and I called to let them know. By then, I was nine days postpartum. They said to get a cuff from CVS and call them back with the results. I had no clue what I needed to buy, so I got the cheapest at $29.99. The pharmacist didn't have time to do it himself — which I understand — so I went back home with my little cuff and asked my husband to take it. My blood pressure was then much higher. I called my doctor's office back, and all they say is, "Your BP is high." Nothing about coming in or following up. By then, I had gained another twenty pounds within days and was weighing more than on the day I delivered my daughter. My body felt like I had gone through the most intense night of college partying on top of having the flu. I looked like a marshmallow man.
My parents and husband were home with me and told me to take a nap. I had a terrible headache, and when I woke up and took my blood pressure, I was at 208/107. Much higher than my normal numbers. I called the doctor again, and I swear the doctor on call said, "Maybe you don't know how to take your blood pressure. Call us tomorrow." I texted a friend of mine to tell her about it. Her husband is a physician, and she immediately wrote back: "Call an ambulance. You're going to the hospital."
The caption says, “On magnesium — only time I held her in 4 days in hospital.” (Family photo)
When I got there, my blood pressure had skyrocketed to 219/104. My infection was so bad I was bordering septic. They weighed me, and I had gained 40 pounds since giving birth. My edema was three times the amount of fluid I should have had in my body. How no one noticed at my doctor's office is beyond me.
The ER doctor said, "give her Tylenol and send her home." But I requested to be seen by an OB. They reluctantly agreed and put me into an overflow room in labor and delivery. Immediately the nurse grasped how severe it was, and they diagnosed me with postpartum preeclampsia.
For 24 hours, I was on magnesium drips to reduce my blood pressure and brain swelling since there's a risk of seizure or stroke when your brain becomes too inflamed. I was on such a high level of magnesium two doctors from different departments needed to do it. I had pads on the bed in case of a seizure, and they ran a bunch of tests because my heart rate was incredibly low. That's what happens when your blood pressure gets too high: your body responds by decelerating your heart, so you don't go into cardiac arrest.
I stayed at the hospital for four days. I don't think I fully understood the gravity of my condition until after I was out.
I'm a highly educated white female, and I still had to fight to be taken seriously. I can only imagine what would have happened with a different demographic.
I still have co-morbidity issues due to postpartum preeclampsia. Everyone told me my blood pressure would regulate itself after two weeks, but it didn't until eleven months after my episode. I'm eating incredibly healthy, doing spinning, and I walk a lot. Still, as a result of having waited so long, I have high cholesterol and a fatty liver, which is common for survivors of preeclampsia. I still check my blood pressure three or four times a week, and I'm always at risk of having to be put down on insulin.
Three weeks after I was hospitalized, I went to the same ER because I was sure I had a heart attack. They did cardio testings and sent me home, telling me nothing was wrong. It took me some time to understand I had a panic attack. Anxiety was normal, even expected, considering I was at the same location where I almost had died, but no one mentioned that.
Finally, I found a therapist through a friend who diagnosed me with postpartum anxiety and PTSD. It manifests with all things related to the hospital: before every appointment, I get incredibly anxious. I had a panic attack during my postpartum glucose test. I'm afraid to have intercourse with my husband because I fear I'll get pregnant again and die. Every time I eat, I wonder if it's healthy enough. If not, I think it can be fatal. My blood pressure reads high one day? My daughter is going to grow up without a mom. The fear of dying crippling, and planning for your own death on a daily basis is exhausting.
I started working through that recently. We moved to Reno, and my new therapist does EMDR [eye movement desensitization and reprocessing] that helps trauma survivors. I'm also seeing a nutritionist, an endocrinologist, and a cardiologist. Every six weeks, I need to get blood work done. I have so many doctors that check in on me. I'm grateful for the care, but these are also opportunities to make me feel more anxious and relive what happened to me. Every time I go to the doctor, I'm afraid they'll miss something the same way they missed my preeclampsia.
I had my daughter in June, and by January, I was still working only part-time because I had panic attacks every day. I wanted to be there for my daughter, but I couldn't get over the fact that I had almost died.
In February, I left the career I loved and lived for because I was no longer thriving. I wanted to get healthy and focus on my child. I hired a lifestyle coach who's also a board-certified OB. I got into running but kept asking myself, what else can I do? Why is my body hating me? There's an adage that says that eating well and exercising will fix everything, but it's not true for everyone. I try to practice mindfulness to get better, but it still took a year to get all my labs back to normal. My blood pressure is still all over the place sometimes.
I go to bed at night and ask myself if my husband knows where all the paperwork is if I die from a heart attack. No one tells you cardiac issues and diabetes are incredibly common side-effects for 77% of survivors of postpartum preeclampsia. I had to do a shit ton of research for that and talk to preeclampsia associations to get these numbers. Why are they so hard to find?
Now, instead of going into a doctor's office and letting them tell me what to do, I show up with a binder and tell them what I do. Then I allow them to add things if they make sense in my care as a whole. Being told, "You'll need BP medication for the rest of your life," doesn't cut it anymore. There are other solutions. More specialists with different expertise. The arrogance of the medical world is sometimes mind-blowing. We're not talking about making stretch marks disappear here: my body does not do what it's supposed to do internally. It's scary.
I am grateful doctors saved my life. But I'm also extremely cautious about whom I trust.
Run Mama Run! (Family photo)
Through that, I tried to get involved to give back to the preeclampsia community: it's the sisterhood I never knew I needed. I'm an event and fundraiser planner by trade, so I decided to organize a fundraiser for the Preeclampsia Foundation called 140/90 Run. The goal is to run 140 miles in 40 hours or walk 14000 steps. We had planned to do it in Melbourne, FL, in November, but because of COVID, it'll be 100% virtual. We decided to switch the format to a year-long event with challenges every month. All the money goes to the foundation for a vision grant to researchers who study preeclampsia. 20K is the goal. Anything we get over goes to the Cuff Project for pregnant and newly postpartum people.
I picked that project because the access to a cuff to measure your blood pressure is incredibly triggering for me. No one asked me when I called if I had the means to pay for it or knew how to use it. These are barriers that could prevent people from getting one and possibly die. The Cuff Project offers a free cuff with a pamphlet that explains everything. We're hoping it saves lives. Maybe this event will remain virtual forever. Who knows? It's just good to be part of something great and advocate for a cause dear to my heart. I try to attend as many gatherings as I can and speak to pharmaceutical and physician conferences. I tell postpartum and pregnant people to advocate for themselves and come to their appointment with evidence-based research.
Preeclampsia literally means "before the seizure." Mine was caused by an infection (subacute endometritis), an inflammation of the uterine lining. Infection was the lower portion of the problem, and it can also occur during pregnancy. It was caused by my placenta and how it reacted to foreign DNA in my body. Some women are more at risk (IVF, first-time moms, etc.), and the hormones take a while to level out and be flushed out by your body. Usually, delivering the baby "cures" it, and it's gone within 24 hours, but mine took nine days to get out. I'm on the rare side of things...
I'm 15 months postpartum now.
I'm still in therapy, and advocating for this cause is my passion.
I'm feeling pretty good overall. If we ever decide to have another baby, I'd have a 50% chance of having it again, but I'm prepared now and know how to speak up for myself.
I never went back to breastfeeding after the preeclampsia episode. My daughter's been formula fed since day four and a half! I know sometimes it hurts to dry it out, but I never had issues, probably because I never had that much milk in the first place. Not being able to produce milk was the first indication that something was wrong. My body knew beforehand. It's pretty amazing.
We love formula in our house! It's one of the best inventions ever. I'm part of a group (Fed is Best) on which I read stories of babies dying because they didn't have enough nutrition. I had other things to fight for — like my life. She needed food, so I got it for her. Some museums have little glass pots used for animal milk when, historically, the moms didn't have enough to feed their infants. It's not a new thing that women's bodies sometimes don't work the way "nature" has intended. Lots of hospitals will make you sign a waiver if you want to give your newborn formula. It's so fucked up. Whatever you choose, the mom should be at the center of the decision. We are so vulnerable after giving birth: making us feel like we've failed shouldn't be part of the equation.
Speaking of which, we need real mental health checks after delivery. Not filling paperwork in a hurry in the waiting area of your OB or pediatrician. A real, heartfelt, one-on-one chat. I'm super type-A and checked all the "I'm perfectly fine" boxes after I had my daughter, although I had panic attacks almost daily.
Now I'm very open about my struggles, but it wasn't the case at first. I also participate in the Postpartum Support International new mentoring program. I got a mentor paired with me, and now we're texting each other. I try to do the same with the new moms around me. Motherhood can be heavy shit. People only want us to talk about the fluffy stuff, but the reality is that postpartum is not just cuddles and milky kisses. It's also hard, and having someone out there looking out for you is gold.