Experiencing unexplained weight gain is a terrifying prospect for anyone. But for someone with an eating disorder like mine, it’s a particularly daunting challenge.
It was the summer of 2024, and I found myself inexplicably gaining weight.
I am on intravenous nutrition (Total Parenteral Nutrition, known as TPN) through a central line in my chest (Hickman) due to severe gut dysmotility from underlying genetic conditions.
Despite no changes in my TPN, exercise routine, or medication, my weight began to climb at an alarming rate of 2-3 pounds a day.
At first, my dietician thought I was retaining fluids due to low blood pressure. But my weight kept rising, and she suddenly realized we had no idea what was causing my weight gain. Yet, since I’m underweight, everyone thought it was a good thing.
I freaked out and cut way back on how much of my TPN I was infusing. I felt completely out of control with the pounds piling onto my body; I gained 25% of my body weight in 1 month. Then, I was scared and relapsing.
And then sepsis saved my life.
I got sepsis in September. This was my fifth time getting sepsis from bloodstream infections due to having a central line and infusing TPN. But this time, my heart rate dropped seriously low instead of going high, which is not the norm for sepsis. While admitted to the hospital, I asked a cardiologist to look at my heart because it was beating extremely slowly and was staying low.
The following day, I had an echocardiogram of my heart. The doctors spotted a massive blood clot in the right atrium of my heart.
Cardiac issues are a leading cause of fluid retention, but I didn’t know this.
Had it not been for sepsis, I would have died. Sepsis gave me an accidental finding that ultimately saved my life.
I was put on a blood thinner drip to try to shrink the clot for 15 days. The technicians did a transesophageal echocardiogram, where they went down your throat to look at the heart and check if it had shrunk at all, but it had not.
On day 15 of being in the hospital, I had surgery. The surgeons had to fly in the equipment and technicians because their procedure was relatively new.
It was a significant procedure. I spent the night in the cardiac ICU after surgery because the risk of bleeding out was so high. The clot was three by three centimeters. I’m on blood thinners indefinitely because my cardiologist isn’t convinced the central line is what caused the clot as we initially thought.
I had been off my TPN the whole hospital stay due to having to get my central line pulled out due to sepsis. So it makes sense that my weight would drop back to baseline. I had peed out all the water my heart couldn’t pump out with such a vast clot inside it.
Having anorexia is grueling, but having medical conditions that cause spikes and drops in weight is so upsetting to me.
I learned that I can’t settle for “we just don’t know why that’s happening.” Because that method could have killed me, the blood clot could have gone to my lungs, and that would have been the end.
I am lucky that the hospital spotted the clot while I was there for sepsis. I will go as far as to say I’m fortunate I had sepsis. It saved my life.
I have been working hard since then to gain a little weight, and I’m finding it’s almost impossible for me to gain weight on TPN unless you’re retaining fluids for some medical reason.
While weight loss is not the goal, and weight gain can be very healthy, what I was dealing with was a medical crisis that went undetected until I was admitted to the hospital for something entirely different.
I am grateful to be alive.
