Our Journeys

Patient Story

Robyn Heinrichs

"In my heart I knew something was wrong, but couldn't possibly figure out what it was so I told myself and everyone else that I was just really out of shape."

I am 27 years old and was diagnosed with pulmonary arterial hypertension in June 2012. I started experiencing symptoms nine months before I was diagnosed while living in South Korea to teach English. Because I was only living there temporarily, I relied on public transit which meant a lot of walking as well. There are always a lot of stairs to climb at every subway station and I began to notice that I was struggling to get to the top a lot more than I used to. I didn't think too much of it. When my boyfriend and I finished our contracts in Korea, we traveled to Vietnam. I felt like I could barely keep up with him there. In my heart I knew something was wrong, but couldn't possibly figure out what it was so I told myself and everyone else that I was just really out of shape.

Robyn Heinrichs

We finished our traveling and I made it back to my parents' place in Canada, where I grew up, to spend Christmas together. I was excited to be home and began to run up the stairs to my childhood bedroom like I always did. When I had to stop only halfway up the stairs to catch my breath and let my pounding heart slow down, I knew for sure that I had a problem.

"We were lucky enough to see my family doctor. He couldn't figure it out. Eventually he referred me to an internal medicine specialist. I had to wait months to see him."

Mom took me to the emergency room on Christmas Day and we were lucky enough to see my family doctor. He couldn't figure it out. Eventually he referred me to an internal medicine specialist. I had to wait months to see him. In the meantime, I was living on my own and walking to work every day. My condition worsened and my walk to work that should have taken me 10 minutes took me 25. I was stopping to catch my breath every 20 steps or so. I was afraid I would pass out while crossing the street. I was so embarrassed to be clinging to everything I could; fire hydrants, hydro poles, while people passing by in their cars stared at me...probably wondering why a young girl like me with no apparent problem couldn't walk normally. I guess we were wondering the same thing. So many times I cried walking to work.

"My condition worsened and my walk to work that should have taken me 10 minutes took me 25. I was stopping to catch my breath every 20 steps or so. I was afraid I would pass out while crossing the street."

Finally I saw the internal medicine specialist. After explaining everything to him, he couldn't figure out what was wrong with me. He ordered me a stress test. The stress test showed that my heart rate went up extremely high in the first two minutes of walking, but then went back down. My specialist agreed that this was very strange, but because my heart rate went back down during the test, this told him I didn't have a heart problem. When I went back to see him he told me that he didn't know what was wrong with me, but that I would have to live this way. He told me not to worry because my heart was fine and the only way to decrease my symptoms would be to exercise more. After hearing that I couldn't stop crying. I left his office feeling more hopeless than ever.

"When I went back to see the doctor he told me that he didn't know what was wrong with me, but that I would have to live this way. He told me not to worry because my heart was fine and the only way to decrease my symptoms would be to exercise more. After hearing that I couldn't stop crying. I left his office feeling more hopeless than ever."

I continued my life and tried my best to take his advice of exercising more. I clung to the stairway railing of my apartment building every day, pushing myself to get to my suite on the third floor. It was a daily struggle. On really bad days, my boyfriend, who also had a suite in the building, would piggy-back me up to my suite. He started to do everything for me. Suddenly I started to retain water in my feet and ankles. I'd never had water retention before. I had a follow-up appointment to see the internal medicine specialist so I hesitantly went back to see him and showed him my feet. He told me it was normal for a 27-year old to have water retention like that and sent me on my way. This wasn't good enough for me so I made an appointment to see my family doctor again. By the time my appointment came around, I had gained 30 pounds in water weight that went from my feet up to my chest. I was enormous. My doctor couldn't figure it out, but sent me for blood tests.

"By the time my appointment came around, I had gained 30 pounds in water weight that went from my feet up to my chest. I was enormous. My doctor couldn't figure it out, but sent me for blood tests."

I took taxis to work every day and hobbled around the office because I could barely walk with all the water weight. Thankfully I was a bank teller and it didn't require much physical work. My doctor called me at work to tell me that my blood tests were all normal and he believed that this meant it HAD to be my heart. He told me to come down to the hospital for a chest x-ray immediately. The chest x-ray showed that the right side of my heart was enlarged and my doctor suspected congestive heart failure. I was admitted to hospital over the weekend to rid my body of the extra water weight. Once the water weight was gone, my parents took me to the states to have an echocardiogram done at a mobile screening unit in Fargo. We couldn't wait to have one ordered here in Canada...we'd already wasted so much time. The echo showed my diagnosis of pulmonary hypertension (PH).

Since then I have been in the care of my amazing PH specialist. He started me on Sildenafil, which I seemed to be doing quite well on, as well as Lasix and potassium. My parents took me to the Mayo Clinic for a second opinion just to know that we'd done all that we could. While I was there, they did a second heart catheterization on me and this time they also did the nitric oxide test that they hadn't done for me in my city. They found that my levels went down to normal while on the nitric oxide and were happy to tell me that I'd be a calcium channel blocker (CCB) responder. My doctor here agreed with them and has started me on the CCB called Amlodipine along with my Sildenafil Citrate. I've only just started this treatment, but I feel amazing! I'm walking around as quickly as I want without stopping, picking things up off the floor without losing my breath, and daring to do more stairs than I have done in a long time.

"I'm happier than I've been in a long time. I know that is strange because I've just been diagnosed with a life-threatening disease, but at least I know what I'm up against. The worst part for me was not knowing and just living with it."

I feel so blessed to be in the care of doctors and nurses who know about PH and to able to take medications that are helping me. I'm happier than I've been in a long time. I know that is strange because I've just been diagnosed with a life-threatening disease, but at least I know what I'm up against. The worst part for me was not knowing and just living with it. The diagnosis has been hard to deal with, especially not being able to carry a pregnancy. I've screamed and cried over this many times. But I'm happy to be where I am. God has carried me this far and I know He'll carry me the rest of the way. I'm excited to see the upcoming developments in PH treatments!

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.