what it feels like: 'i feel left out' with pulmonary hypertension

allison wells first noticed something was wrong when she started constantly feeling short of breath. when she wasn’t feeling better after a few months, friends and family urged her to see a doctor. it took several more months, and a month-long stay in the hospital, before she was given a diagnosis: pulmonary hypertension.  

pulmonary hypertension (ph) is a condition that causes higher blood pressure in the lungs due to the narrowing of the pulmonary arteries, according to pha canada. because of this increased pressure, the heart is forced to work harder to pump blood throughout the body, which can have negative effects on the heart as well. symptoms of ph include dizziness, shortness of breath, lethargy and swelling of the feet and ankles.  

approximately 5,000 people in canada are living with ph, however, it is thought that as many as 10,000 canadians have ph but are undiagnosed. without treatment, ph can be fatal in as little as two to three years. although there is no cure, with treatment patients are expected to have a 10 to 20 year survival rate.

still working as a schoolteacher in newfoundland and now a mom to a young daughter, allison sat down with healthing.ca to talk about living with ph.  

what led you to being diagnosed with pulmonary hypertension?

i had been feeling unwell for several months before diagnosis. my symptoms included shortness of breath, a dry cough, elevated heart rate, dizzy spells and things like that — almost like a head rush all the time. at first, i just thought like, it’s been a long winter. i’m out of shape. i would be winded after doing very little, even after just going up a half flight of stairs in my own house, i would have to stop and take a break.

for a while, i just kind of tried to hide it. you know, just thinking that it’ll go away. i knew that something serious was going on but i didn’t really want to face reality. so i kept it to myself and played off my symptoms. that was going on from december until may. in april/may i did see my family doctor a few times; people started to notice i wasn’t feeling well and urged me to go see my doctor, so i did.  

i was given all kinds of tests, and finally, at the end of may, i passed out at my school where i was teaching and went to the emerge. that was when i was first told my diagnosis by my doctor. i was an inpatient between that hospital in gander and the hospital in st. john’s, i was in both hospitals for a a month. it was not a fun month; it was a lot of just waiting. it’s not like i necessarily needed to be an inpatient, but as an inpatient you get tests quicker than if you were an outpatient. so that’s why they kept me in.  

so you’re in the hospital for a month trying to sort out what happened; what was going through your head?

[instead of] focusing on the condition itself, i would just focus on what test is next. [i tried not to think about] what would be next for my life as a whole. i didn’t think like, a m i gonna be able to work again ? i didn’t think about the big things, i just focused on the little steps that came: we’re waiting for this test . that’s how i was able to stay sane and not have a meltdown.

i was very lucky; i had a lot of friends and family around. they were supportive. and a lot of visitors.  

did you know what pulmonary hypertension was?

about a month before i was diagnosed, my sister was having a baby shower and i was helping decorate. i was blowing up balloons. i took a snapchat and sent it to my friend who i had kind of confided in i wasn’t feeling well, and i captioned the picture “ probably shouldn’t be doing this. not good for the pulmonary hypertension, lol ,” as a joke. a month later, that was the diagnosis.  

it was a shock. but it wasn’t [a complete surprise]; i guessed that it could be a possibility but crossed my fingers that that wasn’t it.  

was that a scary thought?

yeah. i try not to think about it, but i’m in a few facebook groups like pulmonary hypertension canada, and different support groups. and every now and then, they’ll post if there’s a pulmonary hypertension patient [who] passed away. then that makes it real.

how do you cope with this sort of diagnosis?

there’s always a lot of research being done. so i stay on top of that as much as i can and hope that by the time that i’m in a position where the oral medications aren’t working anymore, or, you know, my disease progresses, that maybe there’ll be something else that’ll give me more time.  

what’s the treatment for pulmonary hypertension?

the next step up from that would be medications that are given through an in-line in the chest. like, a pump — it’s the same concept as an insulin pump, but instead of having it in your side, the tube is going directly into your [chest]. after that, it would be a lung transplant.  

what is your daily life like?

i’m doing very well with the oral medication. if i just met someone, they would never know that i have this disease. there are still problems, thought, especially if i have to carry something up the stairs or, [if] i bend over and do something when i stand back up i’ll be a little short of breath. i can’t sprint anywhere. but like, laughing, i can pretty much do all the time.

i still teach; i am a substitute teacher. i haven’t really missed any days because of my condition. it does affect my daily life; i always have to think, okay, if i go here, i’m gonna have to go upstairs, i’m gonna have to rush. [i have to] make sure i give myself enough time. so if i’m rushing around, i’ll get shorter breaths. and [even though] it affects my life every day, you wouldn’t know that from the outside looking in.  

how do you manage shortness of breath?

and are there any special considerations you have to take in your daily life because of pulmonary hypertension?

[i am] more or less approaching it the same way. for the most part, i still do everything that i want to do. but, like i said, ultimately, when i need to, i am taking breaks. i wouldn’t be able to, you know, hike a mountain, but i can go for a walk or i can walk around a boardwalk. . you just have to make slight adjustments, depending on the situation, like if we go to the beach, i’ll make sure to walk on the hard packed sand instead of the soft sand. i will just take another route that doesn’t include an incline, or things like that. i [avoid] anything that would cause me to be winded. 

and you mentioned that you’re still working through all of this — how has pulmonary hypertension impacted you in your job as a teacher?

not severely. if i’m going to a school with several flights of stairs, i’ll just ask for the key to the elevator. the only thing that would impact me was if i was substituting in a class where we were going to be doing something that required me to be physical. i wouldn’t be able to do that, but in a regular classroom, i’m fine.

what do you like to do when you’re not working?

are there’s parts of this diagnosis that you feel are misunderstood?

yeah, for sure. [pulmonary hypertension] a rare condition, and when people hear you say, oh, my hypertension , they just think high blood pressure. it’s kind of like this stereotype, i think — like it’s a common thing. it’s definitely misunderstood in terms of [what it affects] in your body and how it affects your body. i actually don’t tell a lot of people; my close friends and family know and if i have to tell someone i do. but the majority of people in my life don’t know.

but i’ll have things said to me — like last year, i went to get onto the elevator at school and it was down. there was another teacher there and she’s like, oh, i’ll walk upstairs with you . and i was like, yeah, okay, but y ou go ahead, i’ll be slower because i have a lung condition . i said, i have arterial hypertension . she was like, oh, i understand, i had pneumonia once . i know how it is . it was well-meaning, and you don’t want to be like, it’s not the same. 

do you ever feel lonely because it’s such a rare disease that not a lot of people understand it?

what led you to want to share your story and talk about your experiences?

if [this] helps someone else recognize symptoms that they’re having or even [for] somebody that may have a different disease, just knowing that with a strong support system and the right doctors, there’s hope that you can still live a meaningful life.  

readers looking to learn more about pulmonary hypertension can visit the pulmonary hypertension association of canada and the american lung association .  

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com or on twitter @jonesyjourn

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what it feels like: 'i feel left out' with pulmonary hypertension

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