I’m so excited to share the news of my lupus pregnancy! Well, I did announce it on Instagram and Twitter back in November. I also mentioned it in my recent posts, A Day in the Life with Lupus and my 2017 Yearly Digest. But I know those snippets likely did not reach all of my readers.
I have to admit that I really didn’t expect the word ‘pregnancy’ to enter into my personal vocabulary in 2017. It has been a whirlwind of prenatal education, doctors’ appointments, and brand new experiences over the past few months. In this post, I’m going to share my first trimester lupus pregnancy journey with you partially because it’s a great way for me to document it but also because having lupus can really change the dynamics of pregnancy. I want to provide an educational and relational resource for other people with lupus (or another chronic illness) who are pregnant or considering pregnancy.
(I wrote most of this post during my first trimester but it’s taken me quite a while to get around to publishing it. Just so you know, I am currently 21 weeks into my lupus pregnancy and looking forward to sharing more updates with you soon!)
The first trimester of my lupus pregnancy journey.
Discovering my pregnancy.
This pregnancy came as a huge (but happy) surprise. About 10 years ago I was told that I would not be able to have children naturally, so it’s never been something that I counted on. Mr. Meena and I decided a long time ago that we weren’t going to use birth control because it was probably unnecessary and we wanted to have children if it ever turned out to be possible.
However, all of this changed when I was diagnosed with lupus a year ago. One of the first things I learned about lupus and pregnancy was that it’s high-risk and not always a good idea. I was terrified about the potential complications – especially the possibility of maternal and fetal death. I was also incredibly sick and couldn’t take care of myself, much less a newborn. So this past October I decided to make an appointment to discuss semi-permanent birth control options with my doctor. Ironically, I had to call about a week beforehand and change the appointment to a pregnancy confirmation. I can’t help but laugh because this baby slipped in under the radar right before I was going to shut things down (probably) for good.
I discovered my pregnancy when it was almost seven weeks along. Not only was I not expecting it, but I discounted my nausea because I had just increased the dosage of my immunosuppressant when it began (nausea is one of the major side effects of that medication). I was totally shocked at first. But it didn’t take long for me to adjust to the news. The next day I was reading “What to Expect When You’re Expecting” and planning our pregnancy announcements. I installed pregnancy apps, asked Google a ton of questions about lupus and pregnancy, and resisted telling the whole world (I managed to wait until we reached 12 weeks). I suddenly felt a huge responsibility to take care of this little person growing inside me.
Our announcement photo; taken with Fury 325 at Carowinds.
Searching for good medical care.
Weeks seven through 12 were especially tough for me. I called my rheumatologist two days after I found out and he instructed me to stop taking all my medications except for plaquenil. I was suddenly without pain medication (aside from Tylenol, which doesn’t touch my severe pain) and my lupus kicked back into overdrive not long after I stopped taking my immunosuppressant. My rheumatologist has only treated one pregnant lupus patient before (most of his patients are much older than me) and he tends to err on the side of caution.
I was full of questions for my OB (who had previously been my GYN) when I went in for my pregnancy confirmation. I asked her about all of my medications and she disinterestedly told me not to take any of them. I also asked her to perform an antiphospholipid antibody blood test – because up to 50% of people with lupus have antiphospholipid syndrome (APS), which makes you prone to blood clots. Having APS is particularly dangerous during pregnancy and needs to be managed carefully. She told me it was unlikely that I had it (which was ridiculous because there was a 50/50 chance that I did have it) and she didn’t want to do the test. I insisted, but when I got my blood work back I saw that she did not actually order the test.
It was clear that she was not the right OB to oversee my pregnancy. In fact, I believe that my life and my baby’s life could have been in danger if I had continued to see a doctor that refused to address my lupus pregnancy risks. But, finding a good high-risk OB was not an easy task. It took me another few weeks of asking for recommendations, checking to see who was in-network with my insurance, and calling around before I finally found the Bradford Clinic in Charlotte.
While I was searching for the right doctor I was also dealing with a variety of other stressors, including a barrage of first trimester pregnancy symptoms and the possibility of miscarriage. Somewhere around 10-20% of pregnancies end in miscarriage, but the incidence is higher for women with lupus. I felt like my pregnancy was a moment-to-moment gift that could end abruptly at any time. I was so concerned about it that when we made it past the first trimester, at which point the risk of miscarriage decreases dramatically, I was almost surprised that I still had a baby.
Finding the right doctor and treatment plan for my lupus pregnancy.
I finally saw a doctor at the Bradford Clinic when I was 11 weeks along. He immediately addressed my lupus in great detail and it was such a relief! He wanted to establish a baseline since so many lupus symptoms (such as swollen fingers, a red face, and high protein levels in my urine) overlap with pregnancy symptoms. He sent me home with a 24 hour urine collection kit – so that we’d be able to differentiate between active lupus and possible pre-eclampsia down the line – and that was the happiest I have ever been to pee in a cup. (Well, actually it was a jug).
He gave me the okay to take my pain meds again (another happy moment!) and referred me to a maternal fetal medicine specialist (MFMS) for all my other questions and concerns. I had read about the importance of seeing a MFMS throughout a high risk pregnancy and was ecstatic for the referral.
My first appointment at the MFMS was like a dream – the exam room was luxurious and the staff were all incredibly kind. No one made me feel foolish about my concerns; they were just concerned as I was about making sure I had a healthy lupus pregnancy. Mr. Meena and I got to see our baby via ultrasound for the first time at nearly 13 weeks.
The MFMS put me back on my immunosuppressant and explained that it was actually much safer for me to take it than for me to have a lupus flare during pregnancy. It turns out that there actually aren’t that many medications that you truly cannot take during pregnancy. The category X ones are out but anything else is just a benefits vs. risks scenario (my immunosuppressant is a category D). The only meds I had to stop taking were NSAIDS (except for baby aspirin to reduce my risk of pre-eclampsia) and my muscle relaxer (the uterus is a muscle). I also had to lower my dosage of pain medication so that the baby doesn’t go through withdrawal after delivery.
The MFMS also insisted on testing me for APS (I don’t have it, yay!) and called my rheumatologist directly to address his concerns about my medications. I left the office that day feeling like a weight had lifted off me! It took several weeks of being on my meds again to start feeling better, but I did get there eventually. I highly encourage anyone with a high-risk pregnancy to seek out a MFMS.
My first trimester pregnancy symptoms.
Nausea: I was so nauseous during the first trimester that I lost 20 pounds. Fortunately, I had 20 pounds to lose so my doctors weren’t worried and it didn’t affect the baby’s growth at all. Still, being too nauseous to eat well for about 10 weeks (week four to week 14) was awful. I had never experienced long-term nausea before and it was more difficult to cope with than I had anticipated. Sometimes just sitting up or taking a few steps would make my nausea worse and I frequently went to bed with a growling stomach. It was the main reason that I couldn’t function and why I fell behind in so many areas of my life during the first trimester.
Fatigue: This was also one of the earliest symptoms I experienced. Since fatigue is a huge part of my lupus, I’m never really surprised when I get tired so I didn’t question it at first. However, looking back, this level of tiredness was new to me. There were several nights where I could not physically remain awake after 8pm – I became so incoherent from exhaustion in the evenings that Mr. Meena would have to tell me what happened the next day. I started taking naps each afternoon (sometimes involuntarily), which is very unusual for me. I tend to have a lot of trouble sleeping and I definitely relished my sudden ability to take naps again.
Abdominal pain: This surprised me, because I had never heard people mention this symptom when they were discussing first trimester ailments. My pregnancy app told me the pain was occurring because my uterus was getting bigger and my muscles were getting stretched out. It was usually only mildly uncomfortable and felt like cramps or growing pains.
Out-of-control emotions: I cried a lot. I was crying three or four times a day towards the end of the first trimester. This really made me feel like a pregnancy cliché and it was a bit ridiculous. I also got really happy/angry/sad over the slightest things. Like tiny little baby shoes.
General grumpiness: All the “no’s” of pregnancy really got to me in the first trimester. I knew the big no-no’s but I had no idea there were so many things that pregnant women couldn’t do! Here are a few of them:
– No more than 200mg of caffeine daily. This is really a problem when you love coffee and chocolate.
– No alcohol.*
– No fillings. I had a painful cavity around week eight and my dentist wasn’t comfortable filling it until week 15.
– No cookie dough.
– No foods that might have listeria (like deli meats, soft cheese, prepackaged salads, etc.).
– No hot tubs (or hot baths** or even really long hot showers).
– No getting overheated in general.
– No riding rollercoasters (probably not an issue for most people but we ride them fairly often, so that was hard for me).
– No face wash if it contains salicylic acid.
– No sleeping on your back (after 20 weeks, but I was trying to adjust to this before it was necessary).
– No hair removal cream.
– No unsafe medications (hahahahaha).
– No sitting for too long.
– No standing for too long!
– No painting.
And the list really just goes on and on depending on how strict you want to be during your pregnancy. I’m doing the best I can and sticking to the hard no’s – and let’s be honest some of the strictest guidelines are a bit ridiculous.
*I did have a small glass of wine on my anniversary.
**I still take borderline hot baths while drinking ice water and keeping about half of my body out of the water (it’s all about your core temperature). Someone with lupus/chronic pain can only give up so many luxuries.
Going forward: risk factors and hopes.
There are so many things that I could worry about when I think about the risk factors throughout my lupus pregnancy. My MFMS is most concerned about my risk for pre-eclampsia and IUGR (intra-uterine growth restriction: when the baby is smaller than it should be). My biggest concerns are premature delivery (three in 10 women with lupus give birth before 37 weeks) and going into a flare after delivery that could make me unable to care for the baby.
I have to admit, I’m also pretty concerned about reaching our out of pocket maximum. We are trying to save up for it but life keeps launching lemons at us. A healthy baby is most important of course, but man it is going to be expensive to bring it into this world.
I’m full of hope, however. I’ve made it this far and my baby has shown all the signs of being healthy and normal. I’m hoping to get as close to 40 weeks as possible and to have a minimally stressful labor so that I can reduce my chances of a flare. I’m hoping that my baby won’t develop lupus (ever) and that I’ll be healthy enough to care for the baby. I also hope that my baby is cute and happy – that’s only natural!
I’ve got a great team of doctors monitoring me closely and a great support system. It hasn’t been easy, and it might get a whole lot harder, but I’m convinced it will be worth it. I’m looking forward to sharing the second trimester of my lupus pregnancy journey with you before too long!
Have you had a high-risk pregnancy? Are you considering one? Please share your experiences and thoughts with me in the comments!
Sharing the first trimester of my #lupus pregnancy. Click To Tweet