I wish it were my best friend's girl but it's really Little Red Riding Hood's grandmother again. Indeed--the wolf has resurfaced with a vengeance and the 27 week and 3 day old baby inside of me is likely both the cause and the one in the most danger.
It actually started about three weeks ago with swelling in my feet. Normal for a 24 weeks pregnant woman having acknowledged that me and the little girl just passed the point where we would have resuscitated her in the NICU had she been born then, right? But it seemed excessive swelling and when it spread to my face I had one night of flashbacks to the prednisone moon facies of five years ago with he initial lupus diagnosis/treatment but I've been off the steroids for 18 months now--ever since Matthew and I got married. And then the next day it started around my eyes. Periorbital edema is never a good thing.
Matthew and I went for a walk along the ocean where they'd closed the street to cars. We watched drummers and zumba dancers enjoying the lovely day. We passed a yard sale with lots of baby items on the way back to the car as I tired to explain oncotic pressure and how the I was worried the protein in my blood was off because all the fluid was leaking into places it did not belong. I'd decided to get checked out at this point and in my mind escalated my care from stopping by my closed office to dip my own urine for protein to contacting the OB on call for advice and likely a meet up at the hospital.
At the local hospital, they put the baby on the monitor (the first of many over the subsequent days) and she looked good. My urine was full of protein but my blood work looked okay overall. Lupus is most severe when it affects your kidneys, which is often first manifested by blood or protein in the urine. I'd never had problems with my kidneys and was pretty pleased with that fact--always quick to point it out whenever I told someone about my disease.
In obstetric land, however, protein in the urine, swelling, and the fact that my blood pressure was also up is preeclampsia until proven otherwise. And being still in our second trimester, I learned that it would be severe preeclampsia by default. They wanted to have me collect a 24 hour urine sample to quantify the amount I was spilling. I collected my jugs and urine catching device and was relieved that I could keep in on ice instead of in the fridge. I'd warned Matthew that the latter may be the case and he, as always, made me feel better about this among the many insecurities past and in our near future.
I was off work due to the swelling and urine collection and dropped off the urine to a grumpy woman at the hospital just before closing time on Monday evening. She assured me that the results would be ready for my office visit with my normal obstetrician the following day.
5.7 grams of protein spilled in 24 hours. "That's a lot," I responded with muted shock when she told me. "You're need to go straight to the hospital and they are going to transport you to Stanford by ambulance or helicopter," she responded with her hands clasped in an illustrative prayer that Matthew had picked up on when she first entered the room. She had to say it a few times for it to start to sink in and even then we were in a fog. Then my mind started spinning. The baby might have to be born today--way too early. Or I could have a seizure. Or my kidneys could be failing. Or I could die. We both could die.
But no time to worry then, we had to get to the local hospital where they delivered fetuses only over 28 weeks. I had to be "stabilized" for transport. This ended up entailing an iv start, a urinary catheter, the first of two steroid shots that would help our baby's lungs mature by 24 hours after the second shot (if she would just stay put for 48 more hours we'd have that advantage at least), blood draws, blood pressure every 15 minutes. A patient of mine was the ob nurse; she definitely had my back.
Matthew couldn't ride with me in ambulance. They would not even let me scoot to the stretcher, but had to lift me. The magnesium was making me feel awful, red and hot and dizzy on top of my swollen and tired. Someone told me later that a woman who'd had it had described it as feeling drunk in a sauna--sounded pretty accurate to me. It was the worst of the many medications I would have over the next few days, far worse than the steroid butt shots that they warned me about. At least those were over fast.
I was strapped in the transport stretcher like my little adorable twin nieces get strapped in their car seats. The transport nurse and the two paramedics hovering and moving ivs and collecting all the data they could. I warned them that I get carsick and she gave me some zofran prophylactically as the drive would involve a windy hilly road and I'd be looking out the back of the ambulance.
We got to Lucile Packard Children's hospital around 6pm I believe. My mom had started driving as soon as we found out we had to go there and she'd made good time. She was at the front desk when I rolled in. Matthew was on his way with the car and had stopped at home to get clothes and phone charger and stuff for potentially either a long stay for me or a long stay for baby or both.
I was in the labor and delivery ward that night and since the baby was so little she'd swim away from the constant fetal monitor all the time and the nurses would have to come readjust it. I tried to sleep some after mom and Matthew's parents had left but it was pretty impossible. I did marvel at him sleeping in the plastic recliner chair that kept trying to close up on him. I think there were more blood draws that night. OB on call came to assess me. Anesthesia resident came in to talk in case we had to do a c-section. I told him I had strokes five years ago and he wrote "thromboembolic" which I told him was wrong and they were venus, but he just underlined the word. They said that they'd spoken with the nephrology (kidney), rheumatology (lupus) and the maternal fetal medicine (high risk ob) doctors on call and they would all be by to see me tomorrow.
I was awoken early (must have slept some) by a med student on the ob service who never did introduce herself over the next several days as she hovered and scribbled notes in her little book and asked if I had headaches or vision changes or epigastric pain.
We were transferred to the antepartem ward the next day since I did not need to deliver overnight and was looking more stable and could come off the magnesium (hallelujia!). And their beds were much better.
Mom and my wonderful in laws showed up and we proceeded to entertain our long line of guests. I was familiar with the repeated rounds and teams of teaching services and tried to be patient with retelling the story and my history several times. It went faster given my fluency in "doctor speak" and I was very impressed with the communication between services and coordination of care. The main differential was preeclampia vs. lupus nephritis. If the former, I would stay until delivery (potentially months as I remembered vaguely the bored women I'd rounded on eons ago in my high risk ob rotation in med school). With the latter, I could potentially go home. I wished for the latter without really thinking much. "Come on lupus!" just seemed like an odd war cry, especially when it would necessarily involve my precious and heretofore unsullied kidneys.
We had not entered into the pregnancy unknowingly. We knew I was high risk, but most of the concern had been focused around the clotting disorder I have also: antiphospholipid syndrome (or lupus anticoagulant) and I'd been taking the blood thinner shots daily as directed, along with the plaquinil that was supposed to help and I tolerated well. We'd consulted with a lupus specialist at UCSF and a Stanford MFM. The risks for preeclampia were higher (which did give me a week of sleepless nights after we saw one ob for the first growth scan and he walked in not knowing my history but got increasingly dire as it unfolded for him). I don't remember having the risk of nephritis on the radar as much. Premature labor was a risk. But I kept thinking of the old adage of lupus pregnancies going one of three ways: 1/3 better than normal, 1/3 same, 1/3 worse. I wanted to feel lucky. And we wanted a baby, or a few.
Back in the hospital, feeling once again the "interesting patient," They'd decided to treat me for everything still (preeclampsia and nephritis) which mostly involved large doses of iv steroids planned daily for at least three days. They would also do a renal (kidney) biopsy on my third day there. I remembered the one I'd done on a teenager with lupus at our Children's hospital in San Diego. It wasn't the worse procedure ever (or so it seemed) and I knew how important it was to figure out what was going on exactly. We would have a fetal growth scan that same day and a renal ultrasound the day before so I tried to focus on them instead of the long needle I knew would be going into my left kidney. They tried to figure out how to position a pregnant woman for the procedure. I assured them I could lay on my stomach if the still unintroduced ob med student didn't tell the rest of her team. A 26 week along belly is not that big. I knew it would be one of the residents or fellows doing the procedure and didn't want to add any more positioning complications. At least they would do it under ultrasound guidance.
And so it went along. I was not sleeping much as they'd restarted my old buddy the heparin drip which once again was requiring blood draws every six hours and my hypervigilence at patrolling the frequency of meds and blood draws and coordinating meals and trying to sneak in a shower with my iv wrapped in a biohazard bag and as discretely as possible providing them with the stool sample the needed prior to the heparin. I was not really supposed to get up otherwise. Matthew and I would watch some movies before bed. His crazy fold up couch bed was better in antepartum, too. They had one station that just played a bunch of pictures of puppies. I'd mess around with my phone or try to read the books that my in-laws had bought for me and visit with them as they came and went with updates on the contents of the cafeterias and the haps in the nursery down the hall. I'd make lists of questions in my head and try to make sure they clumped as many blood draws at possible together. It was a Children's hospital and the phlebotomists were very very good but I still dreaded them. I got to order room service when I was hungry and they would bring afternoon snacks of egg salad sandwiches or chocolate covered strawberries. The day after the biopsy the nurse even put a note on my door and stood guard so I could sleep for a few hours.
The biopsy itself went as well as I'd expected. Matthew got to sit by my head as the nine other people crowded into the room. The nurse had taken pity on me before she shipped me over and given me a dose of fentanyl (favorite drug of the whole experience as I was able to relax for a little while as it was metabolized way to fast for my liking). The effect had completely worn off, unfortunately, by the time of the procedure since the radiology tech was also in training and was therefore much slower than her teacher. The biopsy team was mostly the nephrology team with the nervous resident/fellow procedure performer as I'd suspected and the radiology team along with the ob med student. I was on my stomach as I'd planned and could not see what was happening, though they did kindly demonstrate the sound of the rapid fire punch biopsy device: "ka-chunk!" I knew they would numb the area and the lidocaine would sting and they cut a hole in the skin with a scalpel and then go in with the biopsy gun. They didn't tell me when they were starting though so I was just sitting there waiting listening to the attending telling the resident/fellow to make the sterile area larger. Fortunately Matthew could see the whole thing and warned me before the lidocaine and as they checked for adequate anesthesia. Matthew said she was pretty shakey and nervous and that the interventional radiology attending ended up basically holding, alighning and checking the angle and position of the gun and all the resident would do is reach in and push the button. "Ka-chunk!" They'd said it almost always took 2 biopsies and they would check them quickly in between to make sure they had what they needed. I prepared myself for three passes just in case. It mostly was a startling feeling with some referred shooting pain to my hip. I tried to stay still as they collected the three biopsies and verified them.
Back in labor and delivery recovery area, a cardiologist specializing in Marfan's (a connective tissue disorder) came to consult on me because my rheumatologist in Santa Cruz had mentioned it in one of his notes as a possibility and it had become some sort of outstanding chart lore. I'd had a heart ultrasound four years ago for pericardidits in San Diego and all was normal there. The most serious and consequential ramifications of Marfan's are problems with the heart valves and aorta, neither of which I had. I'd told several people this by that time and yet here was this cardiologist tearing himself away from the baseball game (Giants winning?) to have me bend my thumbs back and check my heart with his ultrasound the size of a flip out smart phone. He determined I didn't have Marfan's. Great. I was irritated at this point that anything else could possibly need to happen. Didn't I have enough going on? I needed another chronic disease like I needed a hole in my other kidney or a fork in my (well connected) eye ball.
The nephrology and rheumatology teams all reviewed the kidney cells over the next day and, while the pathologist would not finalize the interpretation for three more days, it was looking quite convincingly like Class 4 Lupus Nephritis. I'd spent part of the previous sleepless night trying to re-learn the different classes. One of the results that was most concerning to me was whether it was acute (ie would likely recover to full normal function) or chronic (with scaring of the kidneys that would not return to normal). It looked to be acute, though it did involve greater than 50% of the glomeruli (basically the kidney's filtering sacs) and they inflammation was pretty severe. "Go lupus!"
Now the big question became how to treat a pregnant woman with lupus nephritis as the medications they normally would blast me with (immunosuppressants) were harmful to the fetus. The nephrology team did a lit search and then a very nice rendition of narrowing down the options. Turns out azathioprine and high dose prednisone are the winning combo for now.
And...once I started putting the timeline together, I figured out that if they just moved up my last dose of iv steroids, we could maybe go home that very night!! The teams all agreed and when the last hold up was just waiting for my prescriptions for home, I offered to call them in for myself the next day (all the schooling gotta count for a few perks!). Three or four of the team members called to make sure I had all I needed the next day, including the OB attending who had done our growth scan and who apologized for the delay. Turns out they'd had one of the worse c-sections of her career and a generally horrible night. I can fully understand why my prescriptions were not at the top of their to-do list and was just glad I had resources to have already taken care of it myself.
The shower at home without the iv line was heaven. I had sticky grey patterns on my skin where various things had been taped to me. I was too tired to take on the biopsy bandaid then and didn't find another little bandaid on my butt for another couple days. When I'd decided that bed sounded better then the shower, I went to get out and found that the shower door was stuck with me naked, wet, pregnant, still flushed red and swollen. Matthew was downstairs and I could have yelled but it looked like it was just off its hinge a little, so I pounded on it until it came loose and just left it leaning askew against the wall as I got into my new favorite blue flower and butterfly pjs and crawled into our own wonderful bed where I could sleep next to my sweet husband instead of just having his head at a 90 degree angle from me.
The door actually works way better now that he's fixed it.
