Pregnancy with an Auto-Immune Disorder During COVID-19 Pandemic: Drive-Through Testing, IV Infusion, and OB appointment
I’ve been meaning to write more about the process of becoming pregnant with my auto-immune disorder (pemphigus foliaceus), and I figured this was a good time to also include what’s been happening during the current pandemic. This is just my experience; please consult your own medical professional.
There’s a bunch of info below about how I got to this point (it is very long…), so if you’re more interested in what’s happened during the pandemic, you can click here to skip ahead.
Before we started trying to become pregnant, we talked with my general doctor and my dermatologist (who managed my auto-immune disorder). My original dermatologist referred me to another dermatologist that had had experience with a patient becoming pregnant with the same auto-immune disorder I have; it’s a pretty rare disorder (it’s in the National Organization of Rare Disorders‘ rare disorder database) so it I felt pretty lucky that a doctor nearby had dealt with this before. I actually completely switched over to having her manage my disorder. When we met with her, she also suggested we talk to a maternal-fetal medicine OB, so I made an appointment for a general consult, which would assign us to a random MFM OB. We got lucky again – the random MFM OB happened to also have had managed someone with the auto-immune disorder, and his main clinic was the one near us! He also suggested a general OB that was at the clinic closest to us that I eventually started seeing.
Most of this took place over about three months. Luckily all of these doctors are within the same medical system in the Bay Area (though across three different locations) – it was a lot easier to get referrals and appointments, and they communicate internally a lot. I can’t imagine how much longer just getting appointments to consult with them as a new patient would have been if they were all separate medical systems.
The general consensus was that the medications I was on are not safe for pregnancy, so I would need to switch to something else – and the something else they ended up agreeing on was completely stopping all my medicines and switching to IVIG infusions of Privigen.
With my auto-immune disorder, my immune system is overactive and attacks my skin when it shouldn’t, causing blisters on my scalp, face, chest, stomach, arms, armpits, and back – blisters that pop and don’t heal, and so are very susceptible to infection. My skin gets very fragile; before it was controlled, I would put bandages over the blisters to try to prevent them from rubbing against my clothing, but removing the bandages would cause the top layer of my skin to lift. In fact, when I first went to the dermatologist to try to figure out what I had, as part of diagnosing me, he rubbed a spot on my hand to see if the skin would lift – ew! There’s still a slightly darker spot on my hand where it lifted.
My previous medications were immunosuppressants, basically weakening my immune system and telling it to calm the fuck down. From what I can tell – and I’m still pretty unclear; even the Privigen website says “Exactly how Privigen works is not fully understood” – Privigen is made from the plasma of blood donors and has a bunch of antibodies that prevent my immune system from going haywire in the first place, so it does not need to weaken the immune system to stop it from attacking my skin. This was especially good since your immune system already becomes weaker during pregnancy.
I started the IV infusions at the very beginning of 2019, with a three-day “loading dose”. I went in three days in a row for three to four hours each day to an infusion center in Mountain View; I wasn’t sure what to expect so I just took PTO for all three days. They allow one visitor, so Jack came with me – I really don’t like needles (and still can’t look after all these years of blood draws and now IV infusions) so I look away and squeeze his hand whenever they insert and remove the IV, while he is very fascinated and watches very carefully.
The first day was okay. The infusion center has two main areas that are connected; each one has a nurse station surrounded by 8 recliners that each have curtains that can be closed. I’ve taken to asking for a corner seat if they’re available, so Jack can plug his laptop in while he sits with me and works. Each time before I start the infusion, they take my vitals (blood pressure, heart rate, O2, temperature), and then they give me Tylenol and Benedryl to counteract any side effects of the process of getting the infusion itself. They also offer a warmed paper blanket – I already get cold easily, and the IV flowing into you makes you cold! After inserting the IV and starting the Privigen infusion, they set it up so that the machine will beep at periodic intervals, for when the rate should change – the infusion rate is increased over time to avoid side effects of an immediate fast flow. The total dosage and rate is calculated based on my weight. The Benedryl made me very sleepy partway and I napped for a part of it. When we got home afterward I just passed out until dinner time.
The second day began pretty okay. I started bringing my own blanket so that I wouldn’t need to deal with warmed paper blankets, and napped half the time due to the Benedryl. However, after I went home, I had a really bad headache that didn’t go away even after my long nap until dinner time. It basically continued through until the next morning.
So, the third day I told them about the headache, and they added an additional bag of saline solution to the IV at the same time as the Privigen, to make sure I’m hydrated enough. This was the end of the loading dose, and I pretty much just passed out after I got home. However, two days later, my face got really tight, dry, and flaky, and the tight dryness lasted for about a week. I was worried this would happen every time, but luckily it only happened this one time at the beginning.
Since I started, I’ve gone back in for IV infusions every four weeks; in addition, over the first eight months, I slowly tapered off all of my medications one by one (at which point it was safe for us to start trying). It’s gotten pretty routine – I bring my own blanket, some snacks, and a book, game, or craft project to occupy myself until the Benedryl knocks me out and I nap until the infusion is over, and then I attempt to work from home for the rest of the day while I’m fighting off the Benedryl. Jack drives me there, stays with me (as WFH, hence needing to plug in his laptop), and then drives me home (other than once that he had a meeting he couldn’t reschedule, and also once so far during the pandemic). There were two things that changed over time though.
The first was that over about half a year, I noticed that I would sometimes get a lot of tiny red itchy bumps on the inside of the arm they inserted the IV. These would appear about a day after the infusion and last about a week; they were so itchy I would wake up in the middle of the night scratching them. However, it didn’t always happen, so it was really confusing. It took maybe another six months to try to narrow things down and discover that it was related to the rate of saline solution at the end of my appointments. When the nurses add the saline to the Privigen being infused, there is always more saline left at the end. Some nurses would finish it off really fast, and some would finish it slower. I get randomly assigned to a nurse on duty each time, so it was pretty inconsistent. I discovered that I would get the itchy red bumps on the days that the nurse would finish the saline very quickly, so I started asking them to finish it slower, and no more itchy red bumps! It just means that I have to stay longer each time.
The second change caused me to stay even longer. At some point in the last few months of last year, some recommendations changed or something, and they stopped doing saline at the same time as the Privigen. Instead, now they do half the bag of saline first, then the Privigen, then finish the saline. Unfortunately, since I have to get the saline pretty slowly to not get the itchy red bumps, I am now there for almost 5 hours each time.
Now to what things have been like during this pandemic.
The day before my scheduled April 1st IV infusion appointment, I missed a call from the medical center. They left a voicemail and also sent a message through the online portal; basically they were contacting me to ask four questions:
- Within the past 48 hours, have you experienced a fever, chills, cough, runny nose, sore throat, muscle or body aches, headaches, fatigue, or shortness of breath?
- Within the past 48 hours, have you been exposed to anyone exhibiting any of these symptoms?
- Within the last 14 days, have you had any long-distance travel or outside the United States?
- Within the last 14 days, have you had contact with someone known to have coronavirus disease (COVID-19) or on the Grand Princess cruise ship?
I thought it was kind of funny that the last question was so specific.
Unfortunately, I had developed a bit of a dry cough the week before the infusion appointment. Nothing concerning and I wasn’t coughing that much – I’m pretty sure it was just due to the changing weather. However, this meant that I had to answer yes to one of the questions. I called them back and let them know, and they told me a nurse would call me back. I waited until the end of the day but did not get a call back, so I replied to the online message mentioning the cough and that I hadn’t gotten a call back yet (the original message said to call instead of reply if the answer to anything was yes).
Early the next morning, a nurse called me and told me that I would not be allowed get get my infusion until I had been tested for COVID-19. It felt kind of overkill – I only had a dry cough and nothing else; in fact I had been checking my temperature and I seem to run a degree or so colder than Jack in general. However, at the same time, I get why – I would be in the infusion center with nurses and other immunocompromised people for 5 hours, so it would be better to be safe. I just felt bad that they would be wasting a test on me.
The nurse said she would call me back after she left a message for my doctor (my dermatologist, since that is who the infusion is ordered through) and scheduled a drive-through testing appointment for me. Luckily they were doing them in the same building I do my infusions at; she called back and said that I had a 1pm appointment. It would be in the basement level of the garage, and I should follow the signs and call a number that she gave when I got there.
I was already anxious about delaying my IV infusion, as I had never had to before and didn’t know how long I could delay without the blisters reappearing, but in the hour or so before I had to leave for the drive-through testing, I got extremely anxious and panicky and could feel myself getting warm and flushed. I decided to bring some emotional support, and brought along a sloth plush that we had made a little mask for (he arrived after stay-in-place started so we put a mask on him and kept him away from the other plushes for a while in “quarantine”).
I drove to the medical center and was able to follow the signs to the drive-through testing (though the signs were pretty tiny and it was kind of dark in the basement level of the garage). I had gotten there about 10 minutes before the 1pm appointment, and at that point there was one car in front of me with a medical worker in a mask talking to them, and off to the side there was also another car parked and waiting. After a bit the medical worker finished talking to the guy in front of me, and a security-looking lady directed them to park with one spot open between them and the previous parked car.
The medical guy came to ask me for my name, appointment time, and take my car description and license plate. Then I was also directed to park with one space between me and the car that had just parked. After a bit the medical guy came to ask me if I had a mask; I had brought one with me but since I was staying in the car and I figured all the medical workers would have masks, I didn’t want to waste it if it wasn’t necessary. It looked like he was about to give me one, so I told him I had one and put mine on. Then I waited in the car for maybe 10-15 minutes; I discovered it’s really annoying to check my phone when the mask prevents Face ID from working (iPhone X), especially because I set it so notifications don’t show their contents unless it detects my face.
Then another medical worker in a mask came up and asked me to drive my car up to one of the tables they had set up near one of the entrances to the building. There was a doctor in a mask and plastic face covering in front of the table, and two medical workers in masks assisting her from behind the table and taking notes for her. The doctor introduced herself and asked what I was there for, and I explained that I only really had a bit of a dry cough, but they wouldn’t let me get my infusion without being tested. When she was telling the medical workers what to note down, she said something like “but we’re going to test her anyway because she can’t get her infusion”, which definitely made me feel like I was taking a test away from others that had actual concerning symptoms.
She took my vitals, and mentioned that I had a low-grade fever. I think I did not actually, but I got really warm from a combination of freaking myself out so much that I had gotten flushed, and not want to wear too many clothes there that I had to wash afterward, so I was only wearing a t-shirt with no cardigan and was cold in the car so I had the heat turned up pretty high. After I got home and took my temperature again it was normal, and when Jack stopped in the car after I got home to get something I had forgotten to take out, he said it was still really really hot from when I had the heat on earlier.
After vitals she also came closer to listen to my heartbeat and breathing. Finally the nasal swab… it was like a really long thin q-tip and it didn’t hurt, but it felt really weird and made my eye on the same side as the nostril water up. She told me that I was now considered a person under “investigation” for COVID-19, and to not go anywhere if possible. By 1:30pm I was driving home.
Originally when the nurse called to tell me I would need to get tested, they said it would take about a week to get results. The doctor that tested me said they’ve actually been getting them back in 48-72 hours… I got a message two days after the testing that I had gotten a negative result, so it was pretty quick. I immediately called the infusion center to reschedule, and I got a new appointment for 6 days after my initial appointment.
The day before my rescheduled infusion appointment, I had a dermatologist appointment that had been converted to a virtual appointment. A nurse called me to ask general questions, and then to give me the Zoom meeting code and password, and I connected to the meeting which the dermatologist was already in. Luckily at this point since I’m pretty controlled my dermatologist appointments are pretty much just checking in and talking about any potential concerns, so there wasn’t much lacking by switching to a video appointment.
The day of the IV infusion, Jack dropped me off at the medical center, armed with my mask and stuff I could either wipe off to disinfect or I didn’t mind leaving downstairs for a few days (for instance, I took the leather phone case off my phone so I wouldn’t have to wipe it down). When I got to the door, there was a lady standing right outside the door waiting to go in – there were some signs but I was staying far behind her so I couldn’t read them. However some medical workers came and just waved us in. Once I got in it seemed like it may have just been a station to check vitals of employees before they go to work; the medical workers just asked me what I was there for and waved me in around the station.
In the waiting area of the infusion center, I checked in and sat down to wait. They had blocked off various chairs so that you would be forced to sit far away from anyone else waiting. After only waiting a bit, a nurse came to get me to take my vitals. Usually they would bring me to the recliners first then take my vitals there, but instead that day they brought me into a smaller room first to take my vitals before bringing me to the recliners.
Once at the recliner, things were pretty much like they were normally, except that everyone had masks on and the infusion center seemed pretty empty. I’m not sure if it was because they were spreading out appointments or not though, as my rescheduled appointment was earlier than I usually have them and the nurse commented that she was surprised I was so early because they usually only have chemo patients come in that early. I just played Animal Crossing until I got too exhausted from the Benedryl and then napped. I messaged Jack when I seemed to be about 30 minutes from finishing (still finding it very difficult to use my phone with my mask on), and it was timed so well that he pulled up right as I got out the door.
Originally I had an OB appointment in the middle of March, but it was right after the shelter in place started and since the anatomy ultrasound a few weeks beforehand had been fine and I had no other concerns, my OB had decided that we could just skip that one. Instead, she scheduled the next one for around when I would need to do the glucose test, so that I could come in and do both at the same time.
And so, about a week after my rescheduled IV infusion appointment, I went into the medical center around 9:00am to do the glucose tests and some other blood tests. At the check-in area, they had marked large X’s on the floor for how far people should stand away from each other in line, and also from the check in desk. When I checked in, I told them that I had a 10:45am OB appointment, and that she had mentioned I could probably fit it in between the glucose test blood draws. Because of this, they decided to wait until 9:30am to do the blood draws and give me the glucose drink – I’d read people say it tasted bad but I actually kind of liked it! It was just a very sweet orange drink.
Then I was sent back out to the waiting room, where I played Animal Crossing for an hour until their timer went off and they called me back in for the first hour blood draw. After that was done, I went to my OB appointment. When I walked towards the elevator to get to the fourth floor, I saw a lady and a man waiting – the lady was about to get into the elevator that had just arrived, and the man looked like he was going to wait for the next one. I made a quick decision to detour to the bathroom and wash my hands, because I didn’t want to walk up and wait and risk the awkward interaction of the guy possibly offering to let me take the next elevator. It was at that point that I realized I had no idea where the stairs were and wondered if I could find them before my next appointment.
The OB appointment was pretty quick and uneventful; it did however include discussion of the ability to do a virtual hospital tour and virtual birthing class, since we can no longer do those in person. This was the first OB appointment that Jack had not been able to come with me.
I managed to make it back downstairs right in time for their timer to go off, so they called me back before I even sat down. Last blood draw and it was time to go home!
Overall my medical appointments were pretty much as I expected they would be during this pandemic. It sucks that Jack can’t come with me for anything, but at least right now it seems like if things continue until July, he will be allowed with me during birth.
Honestly, I anticipate not leaving the house (other than medical appointments) all the way until my maternity leave ends in the last few months of the year (still not sure how long I’ll take off). During my virtual appointment in the beginning of April, my dermatologist had mentioned that if things opened back up in May/June, she would write a note recommending I continue to work from home until birth, and that she felt my OB would probably recommend the same. At this point the Bay Area has extended shelter in place until at least the end of May, so it seems likely I will be at home until birth even without a doctor note.
Personally, this shelter in place has actually been pretty relaxing for me. I am very introverted, and just being around people at work (even if I’m not talking to them most of the time) is very exhausting for me. It’s especially good timing because we had already finished up our babymoon, and I had a very nice second trimester, but now that I’ve hit third trimester I’m starting to get more aches and pains so it’s good to not have to go out every day.
I don’t dislike social interactions and hanging out with people, but just chatting with people online and having occasional video calls feels like enough and I don’t feel restless wanting to meet up with people. Luckily for me just Jack, the cats, and daily walks around the neighborhood seem to be enough to keep me sane (Jack does all the grocery shopping) – and I’ve got so much more energy and time for projects I’ve been wanting to do! We’ve been putting a big dent in preparing stuff for the baby; I don’t feel like we’d have enough energy to get as much done as we have if things were still normal and we were going to work every day.
I definitely wish that the pandemic were not happening, and I feel for all the people it has affected, but I’m pretty at peace with how it’s been affecting us personally. I’m sure once I get closer to birth though, I’ll start freaking out about how that will work.