a woman scratches her chin with a chart behind her showing red-emergency-yellow-caution, green-in the clear

Dealing With Life-Threatening Health Issues

I recently experienced many medical issues, a 7-day hospital stay, and being discharged on IV antibiotics 3 times a day for 6-8 weeks. More doctor appointments and visits from home healthcare to change my central line dressing and check on me. And LOTS and LOTS of sleeping. But what happened that got me here?

Looking back, I know that it began when the power port I had for 5 years no longer wanted to play nice and flipped. A new port was placed without issue. Healing also was going along as expected.

First sign of trouble: high fevers

I began having high fevers (102-103°F and higher), shaking chills and quickly increasing redness from the port site up into my neck. I began to develop harder areas (for lack of a better word) and PAIN started in my neck, going down my shoulder and to my chest to the port. I couldn’t get in with anyone over the weekend, including our step-down emergency room (ER) and my primary care provider. Every day, every hour (not being dramatic), was getting worse.

My ER visit for lupus complications

After a month, I felt awful. I cannot even explain how bad it was. So off to the ER, I went. When I got there, I knew it would be a long wait when those around me had been there waiting 8-14 hours. I was showing classic sepsis signs. Thankfully, I only waited 2 hours in the waiting room.

Once I got back to an actual bed, things started happening fast. So fast that I honestly have very little memory of that day. I was on strong antibiotics, fluids, and a blood thinner. There were lots of tests and so many people. But at that point, I realized the chest pain I’d been having on and off and the occasional shortness of breath was not just my anxiety or my constant lung issues. It hit me that I had probably been walking around with these clots for a while.

This sounds dramatic, but I totally feel that the ER doctor saved my life. She randomly grabbed a bedside ultrasound and checked my neck since it was so warm and painful. Had she not done that, I don’t know who or if it would have been done. They found a GIANT blood clot going from my neck to my chest and down into the superior vena cava in my heart, which could have been FATAL.

Sepsis and lupus

I honestly think it was good that I don’t remember everything because it became very serious. I ended up with that giant clot that, at some time, broke off and showered small septic clots into my lung. I was also septic and had methicillin-susceptible Staphylococcus aureus (MRSA) in my blood and in the recently placed port.

The port was removed (also not a pleasant experience), I had X-rays, CT scans, doppler studies, a transesophageal echocardiogram (TEE), which was an awful experience for me, and lots of blood work. I came home looking like a pin cushion. I am glad they were able to find a vein due to the fact I have no good ones left. My hospital doctors were FANTASTIC! They worked so hard to figure out what was going on and how they could fix it. This could be a different story if they had not been so on top of things.

A change of perspective

I must say this event changed the way I look at things. It didn’t all compute before I left the hospital. Two doctors and a nurse told me that if I waited even 12 hours to come in, "There’s a high chance you wouldn’t have survived," and, "Amber, God has a plan for you here! Because if he didn’t, you wouldn’t be here!" Hearing things like that makes you look at your life differently.

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