Rachel Walsh, now 36, went from specialist to specialist to find out what was causing her chronic cough, severe diarrhea, unremitting fatigue, and elevated white blood cell count.
This article is part of ishonest's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
My story starts in 2014, when I was 29. That's the year doctors found a mass the size of a tennis ball in my chest.
I'd gone to urgent care after having a cough and fever for a few days, thinking they were symptoms of bronchitis. But an X-ray proved otherwise. The imaging showed that I had a mass on the base of my trachea. The urgent care doctor sent me to the emergency room. There, a CAT scan revealed that the mass was calcified, meaning it was a buildup of calcium.
As for what caused the mass to develop, doctors blamed a fungus that naturally lives in the soil near my Kentucky home. I had breathed in the fungus, they told me, and it caused an infection that led to the the mass, which I began referring to as my "chest rock."
The location of the mass made biopsy too risky, so doctors didn't test it to see if it was malignant. They said that cancerous masses are almost never calcified, so they determined that the mass was not cancerous and told me, "You're fine."
Then in 2015, my brother went to urgent care with the same symptoms I had the year prior. They also saw a mass on his X-ray. His mass out turned out to be adrenal cancer, and he died weeks later. His death put me on high alert. Maybe we need to look at my mass again, I thought. I contacted my doctors, and they told me they could monitor my mass every six months with a CAT scan. If the mass didn't change over the next two yearsâ€”something a cancerous mass would doâ€”I'd be in the clear.
Two years later, I was cleared again. "It's fine. It's not growing, it's not cancerous, so it's no longer a concern for you," they told me. And for the next few years, everything was fine.
From specialist to specialist
I went to the pulmonologist two months later. But it was the height of the pandemic, and he was only seeing cases he thought were severe. He didn't think mine fit the bill, so my appointment was a virtual one. I told him that it feels like I have pressure in my throat and on my trachea, but he didn't seem to care about my case.
"I looked at your X-rays; your lungs look clear. This is acid reflux," he said, diagnosing me with the digestive condition that causes irritation to the esophagus when stomach acid flows up into it. Chronic cough is one of the potential symptoms of acid reflux. He put me on acid reflux medication.
The medicine didn't do anything, so my doctors started thinking my cough could be caused by allergies. But tests and a scan I had done at an allergist's office came back negative for everything beyond super mild seasonal allergies. The scan, however, did show that lymph nodes in my neck were very swollen. A biopsy of those nodes came back negative for cancer, so the allergist concluded that my symptoms must be from a severe acid reflux. She referred me to a rheumatologist, though, just to make sure I didn't have any type of autoimmune disease.
The rheumatologist tested me for pretty much everything she could think of. It all came back negative. "I have had a persistent cough in the past, and it was acid reflex," she said to me. "It takes months for those medications to start working. I wouldn't worry about it. Just keep taking your medicine."
Because I was also having chronic diarrhea, I went to a gastroenterologist. He performed an endoscopy and a colonoscopy. The only thing he saw was a lot of inflammation in my stomach and large intestines, though he didn't know why there was inflammation. What he didn't see was any signs of acid reflux. Still, he told me to continue taking my acid reflux medication. Afterall, he said, since my lungs were cleared by a pulmonologist, acid reflux is the only reason I'd be having this kind of cough.
Throughout all these specialist visits, my white blood continued increasing. That's what kept me pushing for a diagnosis; the blood tests gave me proof that something was wrong. A white blood cell count between 4,000 and 10,000 per microliter of blood is normal, and my count was hanging out around 20,000. Over and over, the different doctors kept telling me that I must be fighting something, maybe a cold. When my white blood cell count surged to 23,000, I told my general practitioner: "Please, I need answers for why I feel so sick all the time, why I have this cough."
A high white blood cell count can be a sign of some cancers, so she sent me to an oncologist. He did a bone marrow biopsy to rule out any types of blood cancer that wouldn't be detected on imaging scans. The procedure put me in pain, and I had to be hospitalized for a few days because I developed the rare complication of a skin infection at the injection site. Yet once again, the results came back negative for cancer.
"What would you do if you were me," I asked the oncologist, frustrated because I still had no idea what was causing my cough. He responded by saying, "I don't know. All I know is you don't have cancer, so come back in a year to see me."
Getting answers, at last
That nurse referred me to a new oncologist located an hour and a half from my home. For the first time, I felt like a doctor was listening to me. He leaned back in his chair and let me tell my story. When I was done, he said, "We really need to pursue this." That feeling of being heard gave me so much joy and relief. I felt like I wasn't crazy. He showed compassion, and that gave me my dignity back.
But after looking at my scans hours later, the pulmonologist called to tell me that the mass in my chest was the likely reason for my chronic cough and white blood cell count, and that it needed to be removed. However, he wasn't willing to do the surgery to take it outâ€”and he said no doctor in the country would be willing to eitherâ€”because the location of the mass would make the procedure extremely risky. He also believed the mass was wrapped by arteries. "You're probably going to live a disabling life," he told me.
This was crushing for me to hear. So I went back to the oncologist and told him about this latest development. "It's fine," he assured me. "I just needed to hear a pulmonologist say that you had an issue. We'll find a surgeon who can take care of this." Amazingly, he did find a surgeon. But because that surgeon wanted to wait a month to schedule an appointment with me, I went to see a different surgeon the nurse practitioner knew, who agreed to an appointment a few days later.
That surgeon did a scope of my lung, which confirmed the mass was to blame for my cough. My "chest rock" was pushing into the middle lobe of my right lung, causing an almost complete blockage in that lung. The obstruction led to chronic pneumonia, and a biopsy showed that pneumonia had damaged my lung. Ultimately it wasn't just the mass that needed to come out; surgeons needed to take out a third of my right lung, too.
Being your own advocate
Self-advocacy is something that I had to work on during this years-long ordeal. Early on, I was overly polite and downplayed my symptoms when talking to my doctors. I don't know what made me feel like I needed to do that; I wish I wouldn't have. But my experience has taught me that I had to be less polite when advocating for myself.
For instance, when I told my doctor that my recovery pain was affecting my sleep, I put all of my niceness to the side. I wasn't aggressive, but I was very straightforward: "You need to do something about this. This is your responsibility as my caregiver, to help me work through this," I told her. Sometimes it can be hard to speak up for yourself, though. That's why I try to have somebody with me at my appointments now, just so they can be there to make sure that I do speak up for myself when I'm a doctor's office.
Throughout my journey, I questioned my sanity. My diagnosis finally gave me the confirmation that I wasn't crazy. That's message when it comes to getting an accurate diagnosis: never think you're crazy. Hold your doctors accountable if you aren't getting the proper care or respect. That might mean bringing in someone else to your appointment or getting another opinion. Through it all, advocate for yourselfâ€”nobody else is going to advocate for you like you will.