Membership Medicine Part II: Uncovering the Missing Pieces of My Medical Mystery
Membership medicine might just be what you never knew you needed to get your health on track.
This post is the second in a series.
By Monday morning, October 17, I was off on an early flight to Denver, excited for the week ahead and for some time to get away from the everyday. While I did get away from the everyday, I didn’t expect to need another vacation once I returned home. Being first-timers in Colorado, none of us had ever experienced the high altitude and dry air it’s known for –- while my in-laws complained about their sinuses and allergies early on, however, I thought my sinuses “felt more open” –- though I was in for a rude awakening.
That Wednesday, I experienced my worst-ever stomachache, likely brought on from eating too many sugar-free chocolate toffee bars, though I blame the abundance of candy and fudge shops in the region. Tempting me with it while fooling me to think I could also keep up my low-sugar diet.
Otherwise, I felt fine until Saturday morning, the morning after the wedding. I was immediately alarmed when looking in the mirror that two nights of drinking had started to show on my face. Both of my eyes looked puffy, with my upper eyelids drooping and visible wrinkles showing under my eyes – something I never had experienced before. I focused on it in the morning, venting my concerns to my family.
While out sightseeing that day, I wore sunglasses as usual, happy to shield my eyes. Though I thought less about it as the day progressed, I began to feel sore and achy in my legs while checking out the Buffalo Bill museum and grave. What I initially attributed to sore legs from extensive walking I soon realized was much worse when I began to experience facial pressure.
Having been diagnosed with chronic and acute sinusitis in my 20s, I’ve had many sinus infections over the years and know exactly what they feel like. By the time we made it back to the hotel room that day, I was exhausted and could barely move. In the short amount of time we had before dinner, I began Googling my symptoms and growing concerned they were all connected and possibly indicative of something worse. Because I hadn’t been able to take my thyroid medication as usual on an empty stomach that week, I worried that my eye symptoms were due to thyroid eye disease.“Or was the eye thing from an allergic reaction?” I found out months ago that I have a sesame allergy, and, because I had another appearance of the mysterious bruising I occasionally get, I thought, “Maybe I was exposed to sesame during the week?”
When you’re away from your usual routine, things can go awry. I wasn’t taking all my meds as I usually do when I’m home, either from the timing or from forgetting to bring something or not being able to find something (like my asthma inhaler, which happened). I wasn’t eating as healthy as I now do when I’m at home – and the additional gluten and sugar, I worried, was throwing my body out of whack. On top of that, I immediately felt guilty about the several glasses of wine I had over the past two days. I had largely cut out alcohol before this apart from the occasional drink, and this week I had told myself it was okay to give in a little, that it wouldn’t hurt. But now I worried that the dry air coupled with the alcohol had totally dehydrated me and my skin. While I had fun during the week, I couldn’t wait to return to my routine and get my body back in check – and to put down the alcohol again, this time, possibly for good.
So, while in the hotel room, I read something else that included my symptoms and warned to see a doctor immediately. With that, I turned to my husband and said I might want to go to Urgent Care.
“What?” he asked, immediately alarmed. “We have to be at the airport at 4 a.m.!”
“Well, tell that to my symptoms,” I said. “Not my fault. I’m serious here. I’m really freaked out.”
He suggested stopping by to see his uncle, a doctor, who was just a few doors down the hall at the hotel. So, I did. He didn’t have any of his equipment, of course, but he gave me Tylenol and the peace of mind I needed at that moment.
I realized, though, that there was another reason for my panic. I was never the type to immediately think of doom and gloom from a few symptoms. But I was being triggered by something else.
Only three weeks earlier, I had experienced an ectopic pregnancy and had emergency surgery to remove it along with my entire left Fallopian tube – and to save my life. On September 10, after waiting two long weeks from the time of my seventh – yes, seventh – embryo transfer from IVF until the day of the pregnancy test, I learned my pregnancy test was positive – but with a catch. It was a weak positive, the nurse said. I was driving when I got the call, yet she didn’t sound hopeful. I pulled over into a shopping center parking lot and asked, “What does a weak positive mean?” Apparently, blood and urine pregnancy tests base a positive or negative result on a hormone known as HCG. Anything over 5 is considered pregnant, and anything below this is considered not pregnant. However, low HCG numbers can often indicate poor outcomes, such as chemical pregnancies – an early pregnancy loss where the pregnancy does not continue to develop as it should (I experienced one of these in October 2020) and ectopic pregnancies – where the embryo implants in a place outside the uterus, typically inside the Fallopian tubes, where it cannot continue to develop, known as a tubal pregnancy (this was actually a Jeopardy! question the other night, and I was practically yelling at the screen when two of the contestants said that a tubal pregnancy involved implantation outside of the tube). If undetected, the growing fetus can rupture the Fallopian tube, leading to internal bleeding, which can be fatal.
My HCG was 10, the nurse said, which was low. She said the plan would be to continue to monitor my levels, as HCG levels should double approximately every 2-3 days. This was a nerve wracking time. Each day I did bloodwork and awaited the results, I’d worry this was the phone call with the bad news, as it had happened exactly two years earlier, catching me completely off guard. But with every phone call, I received the good news that my HCG continued to double as it should. By the time I made it to my 6-week ultrasound, I thought I was out of the woods. I was so excited, foreseeing in my mind the ultrasound photo of the tiny fetus I would receive. So I wasn’t prepared for what happened on the day of the ultrasound when the nurse was unable to locate my gestational sac. I never even knew that was a thing. Afterward, on the way to her office for a consult, I told her I was excited for the pregnancy. She said nothing.
In her office, she explained more and said she wanted me to come back on Monday to check again. I asked her what kind of outcome I could expect. She told me it could go a variety of ways and instructed me not to Google, but that’s easier said than done. While I didn’t want to worry myself unnecessarily, I also needed to know what I was up against. I left that conversation expecting the worst.
The next day, the pregnancy nurse called to say she had spoken with the doctor and that he wanted to see me the following day. She also brought up a word that made me sick to my stomach: Methotrexate, a medication used to prevent a pregnancy from continuing to grow. I was distraught that afternoon as I drove to my fertility acupuncture appointment, so much that I got into a fender bender with another fertility patient upon leaving my appointment! It was a raw moment I’ll never forget – I put the car in park and burst into tears. This, combined with the massive speeding ticket I got a week earlier when nervous on my way to my pregnancy monitoring bloodwork, I felt in that moment as if my life – and my body – were completely out of control.
The next day, I had my husband drive us to the appointment. Afraid of what I might hear, I did not want to drive. What I heard that day was scary and bizarre – but it also left me momentarily hopeful. The doctor detected a pregnancy in my left Fallopian tube and what could possibly also be two other pregnancies in my uterus – what’s known as a heterotopic pregnancy. Considering I had three embryos implanted in my uterus from my recent embryo transfer, this outcome was entirely possible, even if unlikely. Because of this, he was hesitant to give me the Methotrexate, as this would affect any other pregnancies that might still exist. So, he recommended I undergo surgery as soon as possible to remove the pregnancy and the entire left Fallopian tube. Yet, he couldn’t perform the surgery himself because he was new to the practice and wasn’t yet licensed in New Jersey. And none of the other doctors at the practice do surgery. Because it was Saturday, I wasn’t able to get an appointment with my OBGYN/surgeon until Monday. So the doctor advised me to rest the remainder of the weekend, to monitor myself for any signs of cramping or pain, and to go to the ER immediately if any symptoms develop. He couldn’t believe how calm I was with the news; even afterward, I was asking all these detective-like if-this, then-that questions about my situation. It’s crazy, but the hopeful feeling I got from thinking that some good might come from this unfortunate situation after all kept me from feeling scared. And, honestly, after having so many cycles fail to generate any pregnancy at all, I was just glad to hear something else. In my mind, at least if this didn’t work out, I felt I was getting that much closer. So I’m not sure if the gravity of that situation had really hit me.
The rest of that day, I talked a mile a minute, since I could not chill out and relax after being told what I just heard. Somehow I was able to focus and get some work done at home the next day. The worst part of that weekend, though, was getting through the night. I worried, “What if something would happen while I slept? If it ruptured, would I even be aware? Would I wake up?” I’m not sure how I ever got to sleep those two nights.
Monday morning, September 26, I called my surgeon’s office and scheduled an appointment for 1 p.m., the earliest they had --- but not early enough. However, I wouldn’t end up making that appointment. While eating breakfast, I suddenly felt cramping on my left side. I knew something scary was happening. Then, all of a sudden, I felt so lightheaded I could barely stand. Sitting on the floor, I grabbed the phone and dialed 911, where I was taken by ambulance to the emergency room. Once there, I was taken for an ultrasound, where I was soon told that the pregnancy had already ruptured my tube, causing internal bleeding. After undergoing emergency surgery to remove my left tube, I was happy to be alive but distraught over all I had lost — and it turned out that what the doctor thought may have been two other pregnancies were actually just blood clots. When I later returned to my part-time job after recovering from the surgery, my manager said to me, “You know, you could have died from that.” As if I didn’t know.
So, as I panicked in my hotel room in Colorado, I knew this panic was coming from something else. Those words “Youcould have died” echoed in my mind, and I had a typical PTSD response: “If last time I had such few symptoms and had such a close call, what if something like that could be happening now?” I thought.
That night, I didn’t sleep a wink. Instead of looking for the Tylenol I had put somewhere in my handbag, I just suffered awake, tossing and turning, feeling positive I had fever and assuming I probably had a sinus infection or COVID. Already awake sometime after midnight, I gave up my attempt to get even a little sleep, turned on the light, and began to get ready.
By Sunday, we were home, and I took one of our at-home COVID tests. It was positive. When the second was positive, I had my answer, though my husband suggested I schedule a PCR test. After scheduling one at a nearby CVS, he had a thought: “Why don’t you see your new doctor? Maybe he can give you a test.”
So I did. Barely an hour and a half later, I was meeting with Dr. Sadel and getting tested for COVID and the flu. Same-day service in the American healthcare system is almost unheard of, but now I’m experiencing what I thought was only available to the top 1%. After commenting to the doctor’s wife, Vivi, who runs the office, that I was enjoying “this first-class service,” she corrected me: “Not first-class. Just good service. What it should be for everyone.”
During this visit, I was able to bring up everything else I had experienced that week as to leave no stone unturned: the stomachache, the eye swelling, the fever, the congestion, the achiness –- leading the doctor to surmise that I was dealing with both COVID and a sinus infection. Because I had the time, I even mentioned the extensive odd bruise that had appeared on my legs, something I've experienced on and off since around 2011, which had become more concerning after experiencing years of infertility and being on a mission to solve this mystery.
Dr. Sadel wasn’t concerned by the eye swelling –- he figured that was probably something unrelated –- but then I remembered to show him the bruise on my leg. He looked alarmed and said he wanted to test me for something called Factor 11, a Jewish genetic blood disorder. But when I mentioned to him that I’ve taken an antidepressant since 2007 and that I had assumed that the bruising was a side effect, the light appeared to turn on in his mind. He suggested that the Zoloft could indeed be causing inflammation that led to the bruising and that it was possible this was also contributing to my infertility. While the thought of getting off Zoloft terrified me, I was more terrified to continue to take medication that could be causing more harm than good. I left the appointment that day feeling part anxious, part excited –- as if I had turned a corner in solving this mystery and getting myself closer to starting the family we so desired –- and totally overwhelmed, knowing this could be another long journey I was in store for.
Several days later, I spoke to my psychiatric NP, who was on board with developing a plan to ween me off the medication. Because I had been on antidepressants for about 15 years,I wasn’t expecting this to be a quick taper. But that’s what she wanted to try.
One week later, apart from experiencing some minor withdrawal side effects including night sweats, achiness, and fatigue, I am relieved to feel generally okay –- better than I had expected. I had a phone consult with my reproductive endocrinologist to discuss next steps for moving forward with IVF. I was pleased to hear that we’d probably be able to fit this next fresh IVF cycle in before the end of the year so I could use up the remaining fertility insurance coverage I had left. He asked me to get bloodwork that day to determine exactly where I was in my cycle. Usually, when I knew in advance, I would drive all the way to their Jersey office location for this to ensure they received the results quickly and to avoid the chaos that had happened when I had done bloodwork locally, with the results either not getting to the doctor’s office in time or getting mixed up in the shuffle somehow.
So, considering it was the middle of the afternoon, being treated by Dr. Sadel at Preservation Health during this time was really a Godsend. I was able to get the bloodwork done there in the office, where it would be sent to my specialist’s office asap safely and securely –- one less thing to worry about.