On Rebirth: A Life Update

I graduated!! Not from college, though I am working on that. I mean I graduated from the clinical trial I’ve been participating in since September.

Run by Dr. Vernino at UT Southwestern in Dallas, Texas, this clinical trial is researching the effectiveness of IVIG treatment for autoimmune presentations of POTS. If you want a (very) quick crash course on IVIG and autoimmunity, read on: IVIG is a drug that’s used to reduce inflammation and prevent the body from attacking itself. Autoimmune diseases are conditions in which the body mistakenly damages its own healthy cells and tissues. IVIG is used for some autoimmune conditions, as well as other types of diseases.

IVIG stands for Intravenous Immunoglobulin. “Intravenous” means that the drug is delivered via infusion through the vein. As explained by this article, Immunoglobulins are “made by the immune system of healthy people for the purpose of fighting infections.” IVIG comes from plasma donated by thousands of healthy people, and the immunoglobulins (also known as antibodies) in this plasma are helpful for treating particular illnesses.

My mother had first told me about the trial in 2021. I put it off, thinking I didn’t need it since I was doing so well at the time. But then a flare came out of nowhere in the spring of 2022 and changed everything. On the first day of Spring Break, I came home from a doctor’s appointment that would become the first of many and I saw a post on instagram from someone in the trial. They were chronicling their experience participating in clinical research and explained that the trial was still enrolling patients. They encouraged people to apply.

Even then, I made excuses. “I want to finish this semester.” “I don’t want to come off my meds for testing.” But stumbling upon the post felt like fate somehow, and the trial lingered in the back of my mind as spring turned into summer.

Summer 2022 turned out to be a summer from hell–literally. For 21 consecutive days, temperatures reached above 100 degrees fahrenheit. According to DFW Weather News and Blog, in total, we experienced 47 days of over 100 degree heat. And relief from rain was scarce.

Since my symptoms worsen with heat, my health declined over the hot weeks and my independence dwindled again. I sublet my apartment for the fall and moved back home. I stepped down as club co-president and applied for my university’s disability course-load reduction. My “toolkit” of coping mechanisms (salt, fluids, current meds, exercise, acupuncture) no longer fixed anything. It was like a film I’d seen before, back in 2019, and even though I knew more about POTS than I did before getting diagnosed, I felt almost as helpless as I did then. I didn’t know what else to do, except for one other option. At this point, the trial was no longer at the back of my mind; it was front and center.

I spent weeks going over my pros & cons list. I had daily conversations with family members. “Should I reach out to the trial coordinator? Can I handle all the travel involved? How do I know what the right decision is?” At the time, I thought I was searching for an answer. But looking back, I see that I already knew my answer was yes, I wanted to do the trial, and that those weeks were really spent convincing myself not to yield to fear and doubt and worry. I wasn’t trying to make a decision, I was trying to accept my decision.

I sent an email to the coordinator and for weeks, I heard nothing. “I guess it’s really not in the cards for me,” I thought. “Maybe they’re no longer enrolling.” But still I carried my phone with me everywhere; I kept the ringer on. I was anxious that they would call me when I was embarrassingly unavailable: on the toilet, or taking a shower. Then one afternoon, around 2pm, my phone began to vibrate. I swear, I knew it was Dallas before I even looked down.

They squeezed me in in September, on my lucky number, the 22nd. “You came at the perfect time,” they said. “We only have a couple of spaces left.”

My first appointment was screening for the trial, and I underwent a series of tests and assessments. They listened carefully to my medical history; completed autonomic testing, which consisted of a tilt table test, QSART sweat testing, an ECG, various breathing exercises, and pupil testing; blood work; skin biopsies; catecholamine testing; standard neurology exam. It was one of the longest days of my life, but also the most rewarding. The next day, they called me and told me I was eligible for the trial. I had my first infusion 2 weeks later.

In total, the trial consisted of 21 visits to Dallas for treatment and testing. I received two different medicines, IVIG and another drug called Albumin, which was intended to be similar to a placebo. Albumin is a protein that expands blood volume, which can be helpful for people who have POTS, but it doesn’t treat issues with the immune system like IVIG does. The trial was double-blinded, which means that neither me nor the research team knew when I was receiving each drug. The trial was split into 2 cycles, one cycle for each drug, and both cycles consisted of 8 infusions scheduled in weekly and biweekly increments.

If this is sounding like a lot to you, you’re absolutely correct. This trial was a huge time commitment and aptly named: it certainly was trying. The only reason I got through this was because of the empathetic research team, who made me feel so well cared for; friends and family whose support made all this possible (I’m talking about you, Aunt Nancy); and of course, my superhero mother who was by my side throughout it all.

Throughout the trial, my mother was my cheerleader, home nurse, chef, and chauffeur. She was a constant source of comfort and positivity and a grounding presence in every difficult situation. I’ll never forget when we were leaving that first screening appointment, feeling absolutely spent from a long day of testing. My mom was standing at the valet desk, and I was sitting next to a television in the lobby, waiting for the car. Family Feud was on. “When you’re sick,” the announcer boomed, “nothing comforts you like your mother’s…” He paused for the participant’s answer. The options were A, love; B, touch; C, voice; or D, cooking. “E,” I thought, “the answer is E: all of the above.”

Like my mom, my nurses were incredibly caring. During the first cycle, I had a hard infusion day. After a month of weekly travel, I caught a stomach bug and struggled to keep anything down. When I returned to the clinic for my infusion, my veins were shrunken from dehydration. The nurses struggled to place the IV.

After three unsuccessful tries to get a vein, my favorite nurse suggested a break. Helping me out of the reclining chair, she said she wanted to show me something. We strolled to the back window where potted plants sat on the ledge. There was a flower in full bloom, contrasting against the cold, industrial view. It seemed an unlikely place for life to grow, and yet perfectly natural. The neutral colors of the research floor made the flower’s petals seem brighter.

Staring at their makeshift garden, I was moved by how my nurses spent what little time they had not taking care of people to take care of more life. Nurturing seemed instinctive for them, almost automatic.

At my last visit, my favorite nurse gave me a parting gift: a plant starter to grow at home. I watched her pick small parts of the potted plants before she placed them in my hands. “Don’t tell Miranda,” she said. “This plant’s hers!”

Participating in this trial has been healing in many ways. I’ve seen improvements from both drugs, though even more so from the second medicine I received. When I first started cycle 2, I got dizzy and saw spots in my vision just from walking up the stairs. Now, I can climb stairs, do squats, and lift heavy boxes with no problem. In general, I feel much more like myself again.

I still have some lingering symptoms, notably my finger tremors; numbness in my left foot; erythromelalgia symptoms (burning pain in hands and feet); some fatigue; and gastric issues. The medications didn’t fix everything, and it didn’t cure me, but all of the improvements I’ve seen make my illness much more manageable.

In addition to symptom relief, this trial has been emotionally healing. When I first started back in September, I felt almost too sick to be scared. But I was scared, and rightfully so. 2019 left me scarred from the long, grueling process that was my POTS diagnosis. For years, I was weary of making more medical memories.

But the care I received at UT Southwestern was attentive, compassionate, and kind. They made me feel heard, seen, understood, believed. Not only did this trial improve my symptoms, but it also helped heal these lingering emotional wounds. I’m forever thankful for this experience and opportunity.

I won’t receive the results from the trial until the research team reviews and analyzes the data for all the participating patients. The medications remain blinded until they finish this process, so I won’t know when I received each medication for another few months, at least. In addition to researching whether IVIG improves autoimmune neuropathic POTS, my doctor is also studying how long these benefits last.

I don’t exactly know what comes next for me and what my long-term care will look like. The data collected during this trial will likely help inform my treatment moving forward. Because IVIG is costly to manufacture and administrate, the medication is very expensive (reportedly around $10,000 per infusion) and can be difficult to get approved by insurance. The good news is, I was the last participant of the trial, so the research team is beginning to review the mound of collected data!

It’s been nine months of needle pricks, IVs, side effects, and 3.5 hour car rides. Nine months of diligently tracking my fluid intake and keeping a daily log of my symptoms. Nine months of change, fluctuations, surrender, of hope. Nine months can create a new person, can grow a new life. These nine months certainly changed mine.

The best way to describe these past nine months would be as a rebirth. As the medicine tamed overbearing symptoms, old parts of myself returned, as if resurrected from their grave. For the first time in a long time, I saw the me who loved to sing and play the piano. I greeted her like an old friend, picking up where we left off. “Please,” I urged her, “Won’t you stay a while?”

The nurse’s name has been changed for privacy.