In 2016, I was an active 32-year-old. My boyfriend and I were trying to have a baby, and pulmonary hypertension, a disease I had never heard of, was the furthest thing from my mind.
I don't remember noticing any symptoms, just one day waking up with a hoarse voice that seemed out of the blue. I didn't think anything of it, but our administrative person at work remarked that I should get it checked. Even then, I shrugged it off as a possible cold and told her I would see my family doctor if it didn't get better in a couple of weeks.
The hoarseness remained and would remain through a series of futile attempts to treat what they suspected was acid reflux. A dry cough came on at night when I was lying down followed. I learned to keep a glass of water next to my bed, started taking a stomach medication called Tecta and raised my bed to what felt like a 75-degree angle using old encyclopedias. Fortunately, my boyfriend was always cooperative.
During this time, I felt like something had a loose grip around my throat. It didn't hurt, but it was an uncomfortable sensation. I kept swallowing, hoping to clear it. Though it feels much better these days, I still cannot wear turtlenecks. I never knew how to describe this symptom to doctors except feeling like when you are holding back crying and have a huge lump in your throat. I had such weird symptoms, and I am sure this all contributed to a delayed diagnosis.
I can't remember exactly when, but I started experiencing shortness of breath. I was an active person, devoting a lot of time to exercise, and next, I found myself leaving most classes frustrated and almost in tears. I didn't know what was going on with my body. I couldn't keep up, so I tried to exercise more to improve my cardio.
Barely having a voice and difficulty breathing made for an exhausting life. I dreaded social plans, where people always asked me the same questions. I grew weary of hearing, "Do you have a cold?" I backed out of opportunities at work that required me to speak or to go into ICU rooms near patients where I felt having a hoarse voice made staff uneasy. The nurses understandably may have thought I had a cold. I kept working in the Operating Room, where I wore a mask but then began to pick up small, broken equipment and repair it at my desk.
When the frustration and symptoms became too much, I would resort to the emergency room, hoping someone could help, but I would always leave after many hours of waiting to see someone.
I kept going back to my family doctor every few weeks, but every appointment was the same. I had to remind him why I was there, and he would order blood work, which always came back unremarkable. After about ten months, I said enough of this and demanded further testing. They performed a chest x-ray, CT scan, cookie swallow and endoscope. The tests didn't find anything, but the doctor doing the scope referred me to an ENT specialist who discovered that my left vocal cord was paralyzed. It was deemed idiopathic and attributed to my shortness of breath. I was referred to a specialist at the QE2 in Nova Scotia for a Medialization laryngoplasty. This procedure inserts an implant to move my non-functioning vocal cord more midline, helping the vocal cords to touch and generate better voicing.
My shortness of breath became so bad I had to sit to get dressed and stop for a rest between each flight of stairs I took. I finally got to see a lung specialist, and when she looked at my prior CT scan, she noticed that my pulmonary artery was grossly larger than it should be. She called me and said she knew what was happening and to go for an echocardiogram (echo) the next day. The tech doing the echo saw me walking in, thought I looked like the picture of good health and commented that she didn't expect to find anything. Shortly into the exam, she left and returned with a doctor who told me I had high lung pressure. I don't remember much else.
I left and returned to work, but I wanted to know more about what "high pressure in the lungs meant" to my health. I searched the internet, and pulmonary hypertension came up, along with the description. I felt sick but told myself it couldn't be the same thing. My meeting with the lung specialist the next day to go over the results of my echo confirmed it, however, and she referred me to a Respirologist and PH specialist at the hospital where I worked.
I met with them, and they gave me the bad news about pregnancy being a contraindication. I was scheduled for a Right Heart Cath to confirm Pulmonary Hypertension and some further tests, such as a Pulmonary V/Q scan, to rule out causes. We stopped trying for a baby, but it was too late. I took a test a few weeks later, never thinking I was pregnant. We had been trying for almost two years with no luck. When I went to throw out the test, there were two lines. My heart sank, but I knew you must check the test within a timeframe, and I was beyond that window. I figured the test was erroneous but still mentioned it to my PH specialist the following day.
The whole situation was just awful. My boyfriend and I wished for a baby for so long, and now we knew what it meant with my condition. I know people may ask, If you were so sick, why were you trying to have a baby? Well, despite my symptoms, I never stopped my routine. Despite feeling breathless, I never missed a day of work or the gym and never took an elevator. I knew how I felt wasn't right, but the doctors weren't finding anything, so I kept going.
Ultimately, I decided to have the recommended medical termination. No one pressured me. Knowing how sick I was and with the information laid before me, I felt like I only had one option. I sought second opinions with an OBGYN and maternal-fetal care. I questioned if I could do it, and I just knew I didn't want to die. My dad had flown up to be with me after my diagnosis. I found out I was pregnant during his visit but never said anything. I almost told him on our drive to the Halifax airport as I didn't want him to leave, and I really wanted his help, but I knew what that burden to make that decision felt like and didn't want him to have to live with that. Making that choice was my cross to bear. I called and told him after it was done, and we cried together.
My life may have been saved physically, but mentally, I was destroyed.
But my story has a happy ending. I am now the proud mom to a 3-year-old boy who I can't begin to describe the happiness he brings. My PH is controlled, and symptoms are minimal. I am on only two oral medications. One is a calcium channel blocker, and the other is Adcirca (Tadalafil). I worked hard at my job and am now the supervisor of the Clinical Engineering department at the Moncton Hospital. Though my left vocal cord will always be paralyzed, I talked so much that my voice returned, and I never needed the surgery. I may have been through a lot, and looking at me, no one has any idea of my struggles, but we all have a story to tell, and I feel very fortunate.
Contributed by Lea George, Living with PAH since 2016, Moncton, NB