PATIENT STORY Lupus & Pregnancy

By Bizz Rinkes

I was able to stay in a medication-free “remission” of lupus for over 6 months, when my husband and I found out we were also pregnant. We were ELATED. I knew all the risks involved and possibilities, so we immediately called the doctor. Because I have lupus, we came in slightly sooner than most initial appointments to set up a plan. The plan was very much “dependent upon” the progress of the pregnancy, but it mostly only involved additional check-ups throughout. As long as we could both remain healthy, no further precautions were needed.

Because I had been working out at OrangeTheory Fitness prior to getting pregnant, my doctor actually encouraged me to continue, but listen to my body and take precautions with certain exercises. I had been used to listening to my body because of lupus and being sure to not push myself into a flare. The only symptoms I had were exhaustion (hello naps!) and morning sickness. I was working out at 5:15 am so when I was tired, but I wasn’t surprised. I made sure to listen to my body and took naps after work as needed and rested all night. I actually slept in more often during my first trimester rather than workout, but I noticed a pattern that I would actually be more nauseous on those days!! I ended up losing 16 lbs during this time due to the morning sickness.

I started going to the gym more often in the morning and pushed through the initial nausea because by the time I was finished moving my body for an hour, no matter how easy I took it, I would feel better. I tried to limit the rest of my schedule to allow for naps or breaks so my body could recover. I was sure to tell our coaches so they could help me modify exercises and could help monitor my heart rate during class. I couldn’t believe it when I hit the second trimester and my energy started to come back. I felt stronger and faster than ever! I made sure I never ran on inclines and even if I felt like I could run my all-outs at 12mph, I didn’t. I listened to my gut that said “well what if you trip?” I didn’t want to take that kind of risk when

I had such a beautiful being growing inside.

I was lucky to be able to continue my workout regime throughout my pregnancy; and at every doctor’s appointment, I made sure to ask if I was still cleared to keep going to the gym. As I said, we had more appointments than is usual. At every appointment, the baby checked out healthy and so did I; so we were able to keep to our new routine. We had appointments with my regular ob-gyn and a high-risk ob-gyn doctor from the same hospital. I was referred to the high-risk doctor early on, but I didn’t have too much contact with her because of my overall healthy checks throughout my pregnancy.

She was always checking my chart to confirm that I was still within normal ranges. However, towards the end of my pregnancy, we did get to know the high-risk ob-gyn a bit better. We had at least one appointment a week from about 34 weeks on. Every other week we had a biophysical profile test (BPP), which is a combination of tests that checks the baby’s health. It measures the baby’s body movement and muscle tone. It also measures how fast your baby’s heart rate accelerates during movement, and the amount of amniotic fluid protecting the baby in the womb. Each part of the test is assigned points, and basically the baby needed to get a total of 10 points in 30 minutes, which includes 2 points per category of movement - like legs, arms, etc. These movements were measured using an ultrasound. If the total is less than a certain number of points, then we would have to do more testing. We had an extremely active baby, and she never wanted to do her “practice breaths.”

At every BPP, the ultrasound tech would get all the movement points tracked in the first few minutes, and we would spend the last 25 minutes or so sitting and watching the baby’s lungs. The first time this happened, it made me very nervous. We were taken to a room where they set up multiple mon- itors around my stomach. They charted movements and contractions for 30-60 minutes each time she “failed” her BPP. The baby luckily would do well during this “non-stress” test each time. After the second and third time of having to go through this, we started to catch on that this was just going to be our baby’s “normal.” We continued to go through the motions each time though to make sure everything still checked okay .

I ended up having to be induced because even at 39 weeks I was still running, squatting, and doing full workouts at the gym. Since lupus patients have high-risk deliveries after 40 weeks, and my due date was changed, my doctors didn’t want to take any chances. We started with pitocin, and it worked really well for my body. It immediately started the contractions, and we actually had to lower the dose at one point. We had a healthy baby girl the next morning. We were extremely thankful for both doctors who worked together with both our daughter and my recovery.

Out of an abundance of caution, my doctors recommended I go back on Plaquenil after delivery. Hormones are completely thrown out of balance, and the doctors didn’t want negative effects. I also continued taking my prenatal vitamins. However, a few months later, I was able to wean off plaquenil because I was still symptom free. I was able to share a positive breastfeeding experience with our daughter and remain symptom free for almost 2 full years.

We count our blessings every day that we had such a positive experience with our daughter. We finally thought it was time to try for a sibling and a year later we are still waiting in anticipation. I’ve had flare ups off and on this entire time as well. I share this piece of my story because not only is each and everybody different (lupus or not), but so is each and every pregnancy journey. I also share this because as lupus patients, we are always warned of gloomy experiences, but I was happy to write an article to share with you all that it doesn’t have to be that way. At times, our journey requires resiliency (sometimes it feels like it is more resiliency than anything holding us together, right?), but our experience from the start of pregnancy was truly amazing and I finally felt “normal” in a sense. While I am now having symptoms, I’m lucky enough to have a supportive husband, family, and friends who can help when I need them . . . and, I’ve learned when to speak up when I do. I’m teaching my daughter that it’s ok to ask for help. I’m still able to show my daughter what it’s like to lead a healthy lifestyle. And, I’m experiencing things through her eyes. Becoming a mom has been the most exciting chapter of my life. I know as lupus patients we face many challenges, but I hope my story brings some light and hope to other lupus patients.