PART TEN: Blastomycosis
Confused? Read Part 9 here!
I could just as easily title this blog post, “That time that I almost died.” That would get people reading, right? Of course it would.
But, this isn’t a big climactic story… or it doesn’t feel like one to me. There isn’t a car accident, no fiery explosions, no accidental drowning, no bombs in body cavities… This isn’t an episode of Grey’s Anatomy after all.
…And yet, it very well could have been.
Patient (i.e. me) presented with shortness of breath, wheezing, a productive cough, unexplained weight loss, pain in the right side and shoulder, and general malaise.
Oh… and I should probably mention that I was coughing up blood before I finally went to the doctor.
I went to see my primary doctor the week before Thanksgiving. She diagnosed me with community acquired pneumonia, wrote me a script for some antibiotics, and said, “Take these for two weeks. Call me for a follow up appointment when they run out.”
You got it, doc.
Took the pills every morning, washed them down with water before I had my coffee. But I was still short of breath — even bringing groceries in the house was enough to leave me winded. I was still napping for hours every day, like clockwork, at 2pm. The pain in my side and shoulder never subsided… and I was still coughing up blood.
I scheduled my follow up appointment with my primary doctor for Monday, December 10.
On Monday, December 3, I woke up to coughing up tablespoons of blood at a time. Still. Justin looked at me and said, “I think you better call your doctor, babe.”
I begrudgingly told him he was right and picked up the phone.
“No, we don’t have any earlier appointments available, but you can talk to a triage nurse.”
After explaining my symptoms, the triage nurse basically told me, “Do not pass go, do not collect $200, go straight to the ER now.”
So Justin called his mom out of work to take me to the ER. I was still in my pajamas, hair unbrushed, exhausted and in pain and scared. I pulled on my boots and winter coat and reluctantly got in the car after kissing Justin goodbye, promising I’d let him know when I knew something.
A 45-minute car ride, 20 minutes in the waiting room, a CT scan, and a lot of needle pokes later…
The doctor came in with a worried look on his face.
“There’s a mass in your right lung and a pretty substantial amount of fluid surrounding it,” he said. “We want to do a bronchoscopy, but we don’t have the tools to do it here. So you’re going to be transferred to our sister hospital in Weston.”
My brain was going a million miles a minute. I had to sign a bunch of transfer paperwork, texted Justin, and called my mom.
“You should probably get up here. I’m being transferred and I’ll know more of what’s wrong by the time you get here.”
“I love you,” she promised.
“I love you more,” I said.
I got loaded up into an ambulance with tons of blankets and two really nice paramedics who calmed my nerves on the half an hour ride to my next hospital stay. The entire 40-minute ambulance ride up to Weston, I prayed that I didn’t have cancer.
I had lost my grandma on my mom’s side and my dad to different types of lung cancer less than a year apart from each other. That little voice in the back of my head reminded me that once my dad entered the hospital, he never came out. Worry gnawed at my heart as I anxiously awaited for both the doctors to examine me, and for my people to come sit with me. Being alone in a hospital is never something I’ve dealt with very well.
There was a lot of confusion once we finally got to the hospital. It was cold in the ambulance bay… which I guess is to be expected for December in Wisconsin. They wheeled me around, finally stopping at an isolation room. Everyone donned masks, gowns, and gloves and looked at me like I was patient zero.
…Right, I thought, I’m coughing up blood. I might have TB. Or cancer! Or pneumonia! It could be anything!
They took blood, exhausting all the good veins in my arms, made me pee in a cup, and cough up junk out of my lungs so that they could do cultures. I went over and over my family history… The cancer, diabetes, fatal heart attacks, mental illness. We’ve got it all covered in my family tree. And the crazy, traumatic story of how I entered into this world.
When I was born, I was only 27 weeks and weighed 2 lbs. My dad could literally hold me in the palm of his hand. I spent the first 2 months and 10 days of my life with the hospital where I was born being the only home I knew. I had a head of baby fine red hair, purple bruises all over me, and bells and whistles going every which way.
My mom calls my newborn photos from the hospital my “ugly monkey baby pictures.”
I had heart surgery at 10 days old to close the PDA valve in my heart with a metal clip that I still carry the scar from to this day. I was the tiny baby in the incubator, hooked up to all sorts of wires and machines. Once they took me off the ventilators and replaced them with cannulas and tubes up my nose, I figured out how to scoot down in my incubator and set off all my bells and whistles that would send my team of nurses rushing in to hook me back up to the machines. I just wanted to breathe on my own, and I suppose loneliness may have been a factor there as well. I just wanted human contact, but it also serves as concrete proof that from day one, I knew what it took to be a fighter and stake your claim in this world.
I knew that I had to summon that same temperament, the strength and courage to be strong and get through this. It was easier to be brave once my people showed up.
Justin’s mom brought Justin up to stay with me, and his sister came with to visit with me. My mom and my auntie made the 4-hour drive for me. They went to Target and got me stuff to do, Justin brought me all my essentials — phone charger, toothbrush, laptop, some coloring books and my giant pack of gel pens.
Having my people near me cheered me up exponentially… especially when my results from my bronchoscopy the next day came back inconclusive. The plan B? Numb my ribs from my hospital bed and stick a giant needle into my chest.
Lymph node biopsies? Check.
Pleurocentesis? Aka, that giant needle going into my chest and pulling out 2 liters of fluid and pus that had all the markings of some sort of infection. Check.
“We’re not sure what’s wrong with you,” they said, “but we’re gonna find out.”
By day 3 of my hospital stay, I was sick of laying in bed all the time, sick of daytime TV, sick of the 4 AM rounds for blood draws. I was supposed to have a 1-on-1 call with Jenni Maroney that week and texted her to reschedule and explain what was going on. She sent me well wishes and a good pep talk and I was reminded of how great the photography community can be.
Just get through this, I told myself. All you have to do is literally survive this, and you can do anything. You can chase your dreams.
All I wanted to be doing was running around with my camera. I went to sleep every night dreaming of summer and shutter clicks in that dreamy golden hour glow. It was the one thing that kept me going day after day.
On day four, they finally had a diagnosis for me plus scary IV meds to go along with it.
I had Pulmonary Blastomycosis, a rather severe lung infection, and they told me that if I had waited another week or so come in, it would have killed me.
How’s that for a wake up call?
One more time, they wheeled me into the OR to put a PICC line IV into my arm and threaded a catheter to my lung to treat the infection. I was immediately started on Amphotericin B, a highly toxic anti fungal medication. (Yay me!)
Fun fact: During my first round of treatment, they offered me Benadryl to help counteract the side effects and I refused because Benadryl makes me sleepy and out of it and gives me the worst cotton mouth. Justin was sitting on the edge of my bed, we were talking and joking around and then suddenly I couldn’t breathe. I couldn’t talk. I couldn’t do anything but open my mouth and try to gasp for air while Justin ran into the hallway screaming, “We need help in here!”
They disconnected my IV, made sure I was okay, and said, “Now we have to wait half an hour and then start your infusion over again.”
This time I took the Benadryl, dozing on and off for two hours while my medicine did its thing, and everything was okay. Little did I know, this was about to become my entire life for the next two weeks — hooking myself up to my own medicine at home once I finally got discharged, plus home healthcare visits for blood draws and to change my IV dressing… And I can’t forget the foot of IV line coming out of my arm. It was long enough to peek out of my coat sleeves at the grocery store, and I never had the energy to explain it properly.
They discharged me from the hospital the next day. While I was dreaming of sunny days and warmer temperatures, I also dove headfirst into Google to find out everything I could about pulmonary blastomycosis. My findings mostly left me in a long-term relationship with dictionary.com. A lot of the stories I read were about canine cases because, fun fact— blastomycosis is also a disease commonly found in dogs!
But every single human case that I read about made me cry.
I vowed that someday I would write down my story in the hopes of helping other people that are suffering from the same very real, very scary thing.
The antifungal medicine that they put me on to treat my blastomycosis has a side effect of messing with your liver. I started 2019 by going to my doctor’s office bright and early to get blood drawn to check my liver function. I was taking Itraconazole twice a day, choking down little blue and pink pills after every meal.
I had no idea then that 2019 would be the best year of my life.
TO BE CONTINUED... Read Part 11!