D (diagnosis) Day.
March 20, 2020. A seemingly mundane day in years passed, will now hold heavy weight from now on.
With a pending global pandemic, news of the country shutting down and an email from the president of our company telling everyone to work from home for the “two weeks” that we all assumed we’d be quarantined for — my anxiety was full force. Let’s add on top of that the abnormal EKG I had a few days prior and an echo and stress test coming up at the end of the week. WOOF.
The previous weekend, I had started having a lot of back pain. I brushed it off as yoga, I was doing it pretty regularly, or sleeping weird, or lugging the boys around. I didn’t have time to be down, I don’t like to be down and usually by the end of the day, I felt ok. We decided to pull the boys out of school that Tuesday things began shutting down. My mother-in-law was set to arrive Tuesday to help us with what we all thought were two weeks of quarantine, then everything would go back to normal.
On Thursday, March 19th not only did I wake up with a very, very sore, painful back, now, my chest was hurting. It felt tight, achy and very heavy. I’m emotional by nature but can usually keep it together in front of my kids, but not this morning. I was crying, I was scared, I hurt. My abnormal EKG playing in my mind over and over again. I knew in my gut something was very, very wrong.
I told Adam that we needed to go to the ER — something was wrong and thankfully my mother-in-law was here and ready to go, she (in her true, amazing, gift), jumped up and took care of the boys, gave me a big hug, said lots of prayers and sent us on our way.
As we pulled up to the hospital, I began to get nervous, my never-stopping mind started thinking — COVID, pandemic. What if someone in the hospital has it? What if I had a heart issue? What if I was having a heart attack?! I had to stop myself. I took some deep breaths, still terrified and went in. The nurses stopped me — asked all the COVID questions, short of breath? Yes. Maybe I had COVID? Nope, thankfully no, I passed those questions and went into the ER.
It looked very different than I had last seen it. We unfortunately are very familiar with the ER, my son has a history of febrile seizures, we’ll save that for another day. The room was divided in half with panels — nurses were quiet and cautious. It was eerie. Soon a nurse came to get my vitals, get another EKG and sent me back to my own room. The ER doctors and nurses were aware of my upcoming echo and stress test and decided to do a CT scan.
Two friendly nurses met me in the CT scan room, hooked me up to all the things and said they would be using contrast. They said it would be quick but warned me that it would feel like I peed myself… and they weren’t kidding. I laughed, swore up and down I actually did (I didn’t), thanked them for the warning and was wheeled back to my room. The doctor quickly came back — said my heart looked ok but my pulmonary artery was huge, way too big for my size, and likely 3x the actual size it should be. I was confused, I wasn’t sure what that meant but also it didn’t seem like the best news but it was news. I wasn’t crazy.
At that point, they didn’t admit me but sent me up to the Clinical Decision Unit (CDU). This is a designated section of the ER where patients are monitored by a staff team for 6-24 hours. So we knew that we’d be there awhile longer. Since I was settled and feeling relaxed, I told Adam to head home to work and my mom came up to sit with me. I’m so glad she did, because it would be weeks until I saw her again with the shutdown.
Shortly after AP left, they wheeled me up for an echo and a stress test to check on my heart. I waited my turn while an older woman next to me finished her ultrasound and was told to start walking on the treadmill. The sonographer then made her way into where I was. She was around my age, we laughed and joked and honestly — I was really relaxed. She left to go check with the doctor that he had everything — but she had me continue to lay down. She came back shortly thereafter, we talked about our love of true crime and different podcasts we listen to. I knew at that time something must be wrong. I have too many experiences in hospital settings and things like “checking with the doctor” but she kept me calm — she was wonderful.
The doctor came in and explained I had a rather large hole in my heart and that because my heart was already under a lot of stress that I didn’t need to perform the stress test. They then performed a bubble study — no big deal, just an IV of saline that has been shaken up — and my oh my, I had a VERY large right to left shunt. What that means is that I have oxygenated blood looping back through that heart up to my lungs instead of going to the rest of my body.
The doctor came in and explained I had a rather large hole in my heart and that because my heart was already under a lot of stress that I didn’t need to perform the stress test. They then performed a bubble study — no big deal, just an IV of saline that has been shaken up — and my oh my, I had a VERY large right to left shunt. What that means is that I have oxygenated blood looping back through that heart up to my lungs instead of going to the rest of my body.
I remember being wheeled back to the room where my mom waited — I burst into tears, so frustrated that “I couldn’t do the stress test”. I laugh now, it wouldn’t have been good for me at all but I don’t think we anticipated the rest of the day to come. Adam came back that night while his mom took care of our boys. WIth an IV smack dab in my elbow, I couldn’t function — we both got a laugh at just how good he could pull up my hair. Not a bad first try.
The pulmonologist informed us that the following day I would have a right heart cath. A right-heart catheterization (cath) is performed to see how well or poorly your heart is pumping, and to measure the pressures in your heart and lungs. This would be the true test to determine my diagnosis.
The procedure was quick — only about 30 minutes and they found the answer to the problem. Pulmonary Arterial Hypertension (PAH). PAH is a chronic and progressive disease. It is high blood pressure in the arteries of my lungs. It is a very serious condition that can make it difficult for blood to flow through to my lungs. This can force your heart to work harder than normal — that coupled with the hole puts a lot of strain on my heart.
Normal pulmonary pressure levels are under 25 (source). Mine were in the 80s. Severe PAH. Because my heart was under stress — my ProBNP levels were also through the roof at 765pgm/mL (“normal” for a 32-year-old woman is under 124pg/mL). A slew of other tests were ran — but those all came back good (normal lung function, no connective-tissue disorders, etc).
I’m on a slew of medicines now — I’ve had a few follow up appointments and have an amazing medical team close by. I’m getting better by the day — but I still have my good days and bad. But I’m a PHighter… and I’m going to win.
—Chels