If you are a survivor of Preeclampsia or a related condition, I would love to share your story and to run in your honor. Stories can be submitted to firstname.lastname@example.org . The more women know about PE, the better they can advocate for themselves and their children.
Meghan shared her story with me this week. She is a fellow runner who had preeclampsia. She includes some great tips for pregnant women and PE survivors.
I am a runner. I have run one marathon and about a half dozen half marathons since I began running for the sake of running in 2004, right before my 30th birthday. I have run 80 miles a week before (plus road
biking and distance swimming), and when I became pregnant with my daughter, I was running about 40 miles a week, while also swimming 1-2 miles at a time and road biking. I was fit, but in a healthy way -
something that had not always been the case. I always felt it was not worth going for a run for less than 6-7 miles - until I was pregnant. Those 3-6 mile runs were exhausting but exhilarating at the same time
- I had never worked so hard to put one foot in front of the other, yet be going so slowly. The fact that my legs were carrying my daughter and me over those miles, with my belly growing, was beautiful to me - and probably a little concerning for the random person who drove by.
I started wearing maternity clothes just before 7 weeks gestation. I literally gained a pound a week from moment one. You could tell how many weeks gestation I was not by my uterine height, but by how many
pounds I had gained. At 18 weeks gestation, while climbing a flight of stairs at work, I started to have contractions - and not just Braxton Hicks contractions. My headache from first trimester also returned
(gosh, it must just be that hormone headache I thought), and as the weeks went on, I was gaining 4 or more pounds a day at work, and then I would lose it the next 3-4 days while at home, laying down. I had squigglies at the top of my vision while I was out running and sometimes while laying down, and my contractions were continuing and getting more constant. At 26 weeks gestation, while at work as a
Pediatric Nurse Practitioner in a Family Birthing Center, my contractions started to wrap around my body and lasted for 45 seconds every 2-3 minutes, so I called the OB on call. Instead of staying at
my hospital, I traveled to the hospital that I was going to deliver at, which in the end, was a mistake. My blood pressure there was 150s-160s/90s-100s after I had always been 90s/50s, and the
contractions showed up nicely on the monitor. After a few doses of tocolytics and me laying on my left side, the contractions slowed and my blood pressure came down (of course), so they sent me home to do a 24 hour urine. I dropped it off about 30 hours later after fighting with the lab to accept it because my providers had not given me an outpatient lab slip. Little did I know that this was going to be the
first of many mistakes.
Speed ahead 9 weeks: after 9 weeks of continual contracting and hypertension and headaches and visual disturbances and not getting anywhere with my complaints, I am seen by the Nurse Practitioner on an urgent visit for my visual changes getting worse. I have spent these last 9 weeks on self-imposed bedrest when I was not working my 24 hour shifts, because my contractions are unstoppable, I have dilated some, but no one will officially put me on bed rest. I am admitted to the hospital with pre-eclampsia. Turns out my 24 hour urine 9 weeks earlier, along with my hypertension and symptomology, have diagnosed me - and no one acted on any of this. I repeat a 24 hour urine and it is higher this time. I am finally officially placed on bed rest, but sent home. At this point, I am supposed to return if I feel sicker. Honestly, I think I felt sicker, but you are already so sick that your brain is not working (beyond the normal pregnancy brain issues). I am seen at my regular OB appointment 5 days later and am sent immediately to the hospital for induction for severe preeclampsia. The first induction fails, probably secondary to inaccurate Cervidil placement, and I am re-induced. My daughter is born on my 35th birthday after 51 hours of induction and eventual cesarean section secondary to cephalopelvic disproportion after two failed vacuum attempts. She had crowned at 1.5 hours of me pushing, but 3.5 hours after that, she was still only crowned and stuck on my coccyx. The OBs (there were three of them at this point, plus two residents) pushed her back up into my uterus in the surgical suite, thereby completely lacerating/rupturing my cervix and part of my lower uterine segment. She was born healthy despite two severe episodes of bradycardia during my epidural administration and reinforcement, which was the result of my hypotension and loss of consciousness.
She is now two years old, and has a gross motor delay and an expressive language delay, and is seen by Birth to 3, our early intervention program. She is smart and lively - with fine motor skills and receptive language skills being at or above average. Her speech is improving every day, but I waited until the month before her second birthday to hear the sweetest words - "mama." Her gross motor deficits are probably the result of low core tone, and we are also working to improve that.
I had postpartum preeclampsia, along with a host of other issues. I was on blood pressure medications for the year after delivery. I have labile blood pressures now, but am not on any medications. I began running again about 9 weeks after delivery - my first run was 2 miles and it felt great to be pushing that jogger. I was up to 7.5 miles at 7 months postpartum, but we had a horrible winter that I could not take the jogger out onto the road, and I did not make it to the gym, so I lost that fitness over the winter. That next spring I was up to 5.5 miles within a month of running again, and then had a subchondral fracture of my ankle, so I had to take 6 months off running and walking and could not get out with a bike due to my husband's schedule. In more fits and starts, vaccine-not-covered influenza took its toll on me this winter when we finally got a treadmill, but I am now back at it with renewed committment. I am still a runner, even if I am barely getting in three miles a run a couple of times a week. Now, more than ever, any amount of running is worth it.
Pieces of advice for all pregnant women:
1) your spot-check urine does not have to have any protein on it for you to be preeclamptic - I was always negative because I hydrated myself so well and my kidneys just put all that back out there - the 24 hour urine is usually the gold standard, although some studies show a creatinine clearance ratio can be accurate.
2) your blood pressure is not accurate laying on your left side, with a cuff too big for you, with a person not carefully taking it - I never had hypertension in my OBs office unless the Nurse Practitioner or MD took it, but always had it at the hospital when I arrived for my contractions becoming intolerable (and my fetal fibronectin expiring) and I always had it at home.
3) don't be afraid to fire your OB - I wish I had when I miscarried prior to the preeclamptic pregnancy, and had a tech come in and ask when my last period was, what I was using for birth control etc, when I was there as a post-miscarriage appointment. After my delivery, and finding out when I requested my records about all the mistakes made, I did fire my OB.
4) don't be afraid to demand a second opinion with a Maternal Fetal Medicine specialist/Perinatologist - I wish I had, but I listened to the reassurance provided by my providers and did not go with my gut
5) don't take any lip from the L&D nurses - I would rather be a "frequent flyer" than die or have my baby die.
6) educate yourself.
Pieces of advice for preeclampsia survivors:
1) see a MFM/Perinatologist after your pregnancy and before another pregnancy - make sure you have a plan of care for the subsequent pregnancy
2) know your risk factors for future health issues and modify as many of them as you can
3) grieve what you have lost
4) look to the future
5) educate your son and daughter for their futures
6) talk about this so more women are aware
If I had a chance to do it all over again, I would be much more pushy to my providers, and I would tell my husband to do the same. I knew what preeclampsia was. I knew I had it. I expressed this to my
providers, but I was not able to be a great advocate for myself because I was already too sick and figured my providers knew better than I did. As a result of my early preeclampsia, my husband and I
were very fearful of having another pregnancy, but were going to go ahead and have another with some very close medical care. As a result of my cervical injury and my investigation into my now incompetent cervix, I found AbbyLoopers and its experts on transabdominal cervical cerclage. Although it is an option for me, combined with another type of cerclage during pregnancy, my husband and I feel that, combined with the early preeclampsia, my cervical injury and the plan for a subsequent pregnancy, it is too risky for us, so we have decided to not have another child. Today, 26 months after the birth of my daughter, I still cry about this. I do cherish what I have with her and try not to let worry and fear and anger overcome all that I have.