It was a Friday night, and as I was getting ready for bed and taking my nighttime medications, I realized I was out of Tramadol. I didn’t think much of it and went to sleep.

That night was awful. I had the urgency to urinate multiple times, which was completely out of the norm for me. Usually, I can sleep through the night without needing the restroom. Every time I got up, I was so dizzy I had to hold onto the walls just to make it to the bathroom. Then the nausea started, and soon I was vomiting. I felt terrible the next morning and assumed it was either withdrawal from Tramadol or a urinary tract infection. Sepsis never even crossed my mind.

The symptoms continued through the weekend. I couldn’t get out of bed. My heart rate was so high that I burned 4,500 calories in one day just sleeping. I figured I’d feel better Monday after getting my Tramadol refill but that relief never came.

Worried, my husband called a neighbor who’s an ER doctor. He came by to check on me. Around that time, my husband took my temperature—it was 103°F. The doctor strongly recommended I go to the hospital for blood cultures to test for sepsis. I was stunned. Sepsis? No way. I was still convinced it was either a UTI or withdrawal symptoms.

I bargained with my husband: one more day. If I wasn’t better by tomorrow, I’d go get the tests done.

But I didn’t improve. Reluctantly, I went to the hospital to give a urine sample and have blood cultures drawn. By then, I had developed something called rigors—my entire body was shaking uncontrollably, often a sign of high fever or serious infection.

About an hour after we got home, our ER doctor friend called and told us to go to the emergency room immediately. My urine results were alarming. The blood culture would take another 12–24 hours for conclusive results, but things were clearly escalating.

In the ER, my blood pressure plummeted. Even after receiving three bags of saline, it wouldn’t stabilize. I was admitted with a strong suspicion of sepsis. That first night in the hospital, I was freezing and kept asking for more blankets—but they wouldn’t give me any. I didn’t know at the time that I had a fever of 104°F.

At one point, I got up to use the bathroom, and when I came out, about ten nurses and doctors were in the room. My blood pressure had dropped to 67/49 (or possibly lower), my oxygen was below 70%, and my heart rate spiked to 160. Everyone was talking, either to me or about me, but I couldn’t make out what they were saying. Everything sounded like I was underwater, fading fast. I was rushed to the ICU, where I would spend the next five days.

Eventually, the blood cultures came back positive for sepsis. I was immediately started on norepinephrine to raise my blood pressure and heavy antibiotics to fight the infection. The source? My central line, which I used for LR2 fluids for POTS, had become infected.

I had that line for a while and was always told how easily ports, central lines, and PICC lines can become infected. Still, I took great care with it—keeping the site dry, changing the dressings carefully. I think I became overconfident, believing it wouldn’t happen to me. Oddly enough, the insertion site looked perfectly fine. No signs of infection at all.

In the ICU, they scoped my heart. Right where the central line ended, they found a vegetation—an infected blood clot—on my bicuspid valve. It was endocarditis. This was especially concerning because a clot like that could break loose and travel to the lungs. The central line was removed immediately, and the infection source was confirmed. I was stunned. My infusions had been going smoothly with no signs anything was wrong—except for how sick I felt.

I had daily blood cultures until they finally came back negative. After eight days, I was discharged with a new PICC line in my left arm so I could complete six weeks of IV antibiotics at home to fully treat both the infection and the clot.

For about two weeks, everything was going okay. Then the PICC line clotted. I went back to the hospital to have it removed and got a new one placed in my right arm. Unfortunately, because of my Mast Cell Activation Syndrome, I had a severe reaction to the dressing over the line—blisters and weeping at the site. We eventually found a hypoallergenic dressing that worked better, but the site was still was weeping, even after the new dressing was applied.

After completing the six weeks of antibiotics, my PICC line was removed. I’m finally line-free and feeling much better. But I’m not fully back to normal although I’m grateful to have recovered.

I still have lingering effects from the sepsis. My resting heart rate is now around 95 bpm, likely due to being off fluids, which has significantly reduced my functionality. Simple tasks leave me breathless. With POTS, fluids and salt are essential. I’m stuck between a rock and a hard place: get another central line and risk another infection, or continue living with reduced functionality. Having ME/CFS, my baseline was already low. Now it’s even lower. As I write this, my heart rate is 102 bpm—just sitting.

If you have a central line, port, or PICC line, I urge you to never let your guard down. Be meticulous. Even if you have a home health nurse or do your infusions at the hospital, do not become complacent. Sepsis can happen without any obvious external signs.

Sepsis is awful and scary, especially when you’re already chronically ill. It can significantly drop your baseline, even after you “recover.”

I have ultimately decided to get another line placed. I need what little functionality I have to spend time with my loved ones. It’s a risk, but one I’ve decided to take. 

Please be meticulous when caring for any IV insertion site, sepsis happens. It happened to me.