Three Years Ago: My Life Leads to Pulmonary Hypertension

Serena Lawrence avatar

by Serena Lawrence |

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PAH and symptoms

In Life with PH

October 2013 is when I first started to notice unusual symptoms that would soon lead a diagnosis of idiopathic pulmonary arterial hypertension. I can’t recall having any symptoms prior to that month, which is rather unusual. Most PH patients show symptoms for two years before receiving a proper diagnosis, because PH is the great disguiser. It can mask itself as anxiety or asthma. Sometimes the symptoms are simply chalked up to being “out of shape.” I soon learned that finding a doctor who knew what was going on would be difficult.

Prior to those first symptoms, my life was pretty active. Up until May 2013, I worked at the busiest bakery in town for nearly a year. I was on my feet all day, six days a week. I carried heavy boxes up a full flight of stairs with ease. In June 2013, I flew to Montreal, Quebec, for training for a new job. Everyday I would spend hours wandering that hot and humid city, walking up giant cobblestone hills and flights of stairs in old department stores. Then I would go back to my hotel and work out.

Between returning from my business trip and noticing symptoms, I also managed to get stuck on a bus during a mini tornado and had to walk several miles to meet my dad, since all the roads were clogged with fallen trees. I was also followed by a man after work to my hair salon, and ran to the salon to get help. Both of those instances are huge stressers. I’ve noticed that since being diagnosed I cannot breathe, and my heart thumps aggressively, with any sort of panic. I was obviously very scared in both situations, but I didn’t notice trouble breathing or a dangerously fast heart rate.

When I think back to my life prior to October 2013, nothing really sticks out in terms of PH. I can’t really remember noticing anything abnormal that made it difficult for me to function. Even up to October, I was walking a few miles everyday, running uphill to catch a bus daily, and doing a 20-minute bootcamp workout most nights. Again, I didn’t notice anything.

My first symptom was an inability to walk up the stairs without becoming extremely short of breath. My parents have two really large staircases in the house, and October makes my asthma flare, so I attributed symptoms to that. However, I soon noticed that I was uncharacteristically short of breath. I tried using asthma inhalers, but they soon made me feel worse. Clearly, this wasn’t asthma.

Symptoms begin to escalate alarmingly

I started to miss my bus after work, because I could no longer run up the giant hill in time. In fact, I could no longer walk up the hill. I started to see black, but never officially “blacked out.” My dad began picking me up from work but, still, I was able to do less and less. I used to always walk with my boyfriend and his dog along a river near his house, but began  to stay home, physically no longer able to join in.

My symptoms escalated an alarming rate, and developed in a matter of months. It was scary. I started to go to the ER on a daily basis, and noticed that I had stopped breathing a few times in my sleep, which was a horrible way to wake up. I also started to get out of breath while kissing my boyfriend, which was really weird.

At the ER, I repeatedly explained that my symptoms were more than asthma, but each doctor wrote a prescription for a new inhaler without any sort of thorough examination. If they had hooked me up to an oximeter and asked me to walk, my oxygen saturation probably would have dropped to the 70s. But I looked young, I seemed healthy. Many ER visits took place during work hours, and since I managed an office, I usually looked pretty “put together.” A lot of doctors didn’t even second-guess the severity of my symptoms as a result.

I was finally diagnosed in December 2013, three months after the first noticeable symptom that something was wrong. My first PH doctor said I probably had the disease for two years, because the diagnose was stage 3 to stage 4. This still leaves me puzzled. How did I not notice any symptoms, given how active I was? Why did this disease feel like it came on so incongruously, so quickly?

Serena walking along the river in 2016.

A walk along the river, three years after diagnosis.

Sometimes I feel frustrated thinking of all the ER doctors who ignored pleas that my symptoms were more than asthma. From October to December, there was a huge decline in my health. I went from being short of breath going up stairs, to being almost completely bedridden.

It is now three years later. While things aren’t ideal, I am glad to say they’re better than they were. Just the other day, I walked along the river with my boyfriend and his dog, admiring the changing color of the leaves. We didn’t walk as far or fast as before my pulmonary hypertension diagnosis, but it felt good to do something I hadn’t done in exactly three years.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Ella Macleod avatar

Ella Macleod

Thank you for sharing your story it made me realize that I am not alone. My own story is very similar it took 3 months of doctors appts meds and ekgs. Before I was admitted to the er and an er doctor suspected it was pah. After 2 weeks in the hospital I was diagnosed with ipah. It has been very hard to adjust to my new normal my children have made alot of sacrifices.

Serena Lawrence avatar

Serena Lawrence

Thank you for taking the time for reading, and for sharing a bit about yourself as well. Sharing our stories helps create bonds within the PH community since it is so hard to find people in our everyday life who understand what it is like living with the disease. I am sorry to hear about how hard the diagnosis has been on both you and your family. It certainly impacts everyone apart of our lives. I wish you and your family all the best.

Robert avatar


I just got diagnosed with it after 2 blood clots to my eye. I had a echocardiogram. I am so scared. I am age 30 college student. But, I know I am not alone. My grandfather says everyone has something. He knows I will fight it. Thank you all for your posts.

Serena Lawrence avatar

Serena Lawrence

Hi Robert, sorry to hear about your diagnosis. I understand how scary it can be. If you are looking for patient support, you might be interested in some of the resources I wrote about here:
There is a link to Generation Hope, which is a really great resource for young adults with PH. There will be lots of people your age who understand what you are going through.

Thanks for reaching out. Wishing you all the best.

Colleen Enghauser avatar

Colleen Enghauser

My story is also very similar to yours - although without asthma as a distractor (and with an awesome team of doctors) I was diagnosed in weeks. It is shocking how quickly I went from normal function to barely able to walk into the house from my car. And being idiopathic makes things that much more mysterious - we don't have anything to point to as a contributor/cause. Hang in there and enjoy what you CAN do WHEN you can do it...that's my new matra...

Serena Lawrence avatar

Serena Lawrence

I have a similar mantra to yours!

Sunday avatar


I am also a IPAH survivor and now double lung transplant recipient. Thank you for sharing your story. I believe most of us have faced the similar problem of misdiagnosis and the frustration of knowing something is wrong without being able to pinpoint it. I was diagnosed right away once I noticed the symptoms but misdiagnosed by earlier signs that I'm sure were there. Best of luck and health to you.

Serena Lawrence avatar

Serena Lawrence

Thank you for sharing. I hope that you are doing well! Thank you, and best of luck and health to you as well :)

Donna Goodrich avatar

Donna Goodrich

I’ve had COPD and bronchectasis for years but was diagnosed with PAH in January 2019. Have gone from oxygen just at night to 24/7. Cannot walk from one room to another in small mobile without oxygen going to as low as 67. Hard to even go to the bathroom. Got in the car the other day and it was 59 and heart rate was 124 I feel completely helpless. Kids moved in with me but they’re gone during the day. Am also on several meds but nothing seems to help.


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