New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)

Last updated: May 2023

In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that.

My pregnancy was absolutely miserable. I couldn't be near chicken without vomiting. I felt like my energy was drained all the time. I couldn't breathe through my nose for the whole 9 months. My allergies were out of control, and being pregnant meant I couldn't take anything more than Sudafed. I had actually lost weight during my pregnancy. I felt like my body truly hated me.

I gave birth. Why did I still have symptoms?

After his birth, my symptoms didn't seem to be disappearing. Instead, I was obtaining more. Around September, I had a fever between 102 and 103 daily. I was losing weight quickly. I was sweating through my clothes constantly. My hair was falling out and breaking off.

I saw my primary doctor, trying to understand what was going wrong with my body. We found out I had pneumonia. He gave me some antibiotics and an inhaler. I continued having symptoms and gaining more along the way. I started to struggle to breathe. Just going up the stairs made me stop to catch my breath.

I was getting worse. I knew something was wrong

By the end of October, I was just continuing to get worse. My fevers were still climbing, and I was still dropping more weight. I had now lost about 50 pounds in a few months. My hair was starting to look very thin. My face was beginning to look sunken in. Dark circles under my eyes. I tasted metal in my mouth constantly, and my ribs were hurting. I went back to my doctor 2 more times and he tried another medication and more inhalers.

I felt a little better at one point, so he thought it was working. On November 12th, I called my doctor's office, and they told me he wasn't in for the day. I could see the other doctor in the office. So I went in to see her. We ran tests and tried to see if it was my thyroid. She sent me for an x-ray to make sure my pneumonia was gone. The x-ray technician called my doctor from behind the glass and had me go speak to her. I knew then something was wrong. No one ever has you walk behind the glass.

I needed emergency surgery

She told me I needed to come straight back to her office and talk to her. That took a bit because I had my now 4-month-old baby with me, and walking even 10 to 15 steps made me gasp for air. I stopped 3 times in the parking lot to breathe, trying to get back to my car.

Going into my doctor's office, she sat me down and told me my right lung had collapsed. I needed emergency surgery. I was to call and make any necessary arrangements so I could head to the hospital. I called my stepmom about picking up my kids and taking the baby from me. I was also keeping her updated throughout the day. I called my husband at work, telling him he needed to come home.

All the emotions: fear, anxiety, relief

Talking to him, my emotions were too much; my fear was coming through, and I started to cry. I gave my baby over to my stepmom and headed to the hospital. Surgery was the next morning, on my daughter's tenth birthday. I didn't know then, but this event would cause my daughter trauma for her birthday.

Being wheeled into surgery, I remember being nervous but happy. I was happy someone caught it; someone heard me and could stop what was happening. I could breathe again. I had a chest tube placed on my right side, IVs, and oxygen tubes up my nose. I spent a week in the hospital.

I felt better. Until I didn't

After I was released, I still had bandages on my side and a PICC line in my arm for a month of home IV medications, and it took a while, but I started to feel better. Until I didn't. I tasted metal again in late January, and my ribs and shoulder blade were in intense pain.

I was terrified now because we didn't know what was causing it. The next morning I went to another hospital and was transferred to a bigger one. My ambulance drivers said they had never met someone joking like I was on my ride. I laugh my way through uncomfortable situations.

My second surgery

I was told I had collapsed both lungs this time. The infection was wrapping around my heart. My student surgeon was a real jerk and told me I would be awake for my surgery which made me panic. My heart rate shot up so high that another doctor ran into my room, trying to calm me down because it was dangerous. I was very blessed that this man was listening to me.

They allowed my husband to go into surgery with me. They put me in a twilight, and he held my hand through it. I introduced myself to all the male staff in my room because if they were all seeing my boobs, I would at least know their names. I did 2 weeks in this hospital stay.

A newfound fear spiraling out of control

The fear was unbearable. I had untreated anxiety at this point, and my brain was spiraling with "what ifs." A doctor sat on my bed, telling me I was lucky to be alive. He drew me a diagram of my lungs and heart. He showed me how the infection was wrapped around my heart and explained how dangerous it was.

I spent those 2 weeks fearing death and leaving my babies without a mama. I never feared for myself but for them. I grew up not having my biological mom around, and I was afraid for my babies with the turmoil that could come from that. I received another PICC line, went home with another month of IV medications, and had a newfound fear of death spiraling out of control.

Every night when the house got quiet, my mind raced with thoughts of not living another day. The quiet was my worst enemy, and it tortured me. This experience led me through finding my own strength. This experience became the moment the Phoenix resonated with me. Soon I would understand what was happening to me and where it would lead me.

Check out part 2 to find out how Dusty finally got answers and a rare disease diagnosis.

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