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pulmonary hypertension: what it feels like

nicole dempsey was just 39 when she was shocked by a diagnosis of pulmonary hypertension. this is her story.

by emma jones

aug 6 2020
read time 7 minute read
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when nicole dempsey was just 39, she was diagnosed with pulmonary hypertension (ph), a condition characterized by high blood pressure in the pulmonary arteries (blood vessels) that carry blood to the lungs. the increased blood pressure puts strain on the right ventricle of the heart, which if left untreated, can lead to enlargement and/or heart failure.

ph can be hard to diagnose because symptoms are common to other conditions, and include shortness of breath, fatigue, heart palpitations, and chest pain.

healthing.ca spoke to dempsey, board chair at the pulmonary hypertension association of canada and the mom of two, about her experience living with ph and how it has changed her life.

what was your first clue something was wrong?

with pulmonary hypertension, the symptoms are very common to other things. a lot of people are short of breath — you might think you’re out of shape. when i was diagnosed, i was 39. i was teaching grade six, i had two young kids at home — i went a whole year thinking i was just out of shape, or overworked and tired. i was embarrassed to talk to my doctor about it.
i didn’t seek medical attention until things got really bad. it was 2013 in the middle of flu season. i picked up a virus, and i couldn’t walk up a flight of stairs.

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i was fortunate that my family doctor took my symptoms seriously and immediately sent me for the appropriate tests: ekg, echo-cardiogram, and a chest x-ray. when i went for the echo, the technician was visibly concerned and asked if i had someone in the waiting room. she got my husband and said that she would be right back. then the cardiologist comes into the room and says, “i’m going to cut to the chase here. you have severe pulmonary hypertension.” it was all so crazy — how often does the specialist come into the room to announce that you have a deadly disease?
many people with ph go two or three years without getting a proper diagnosis because their symptoms mimic other things, like asthma, for example. now i advocate to others, “if you have symptoms, go to the doctor.”

how does one live with the uncertainty of a life-threatening condition?

i’ve always taken it in stride. i never felt self-pity or asked, “why?” i knew my diagnosis was going to be life altering and it would just take some adjustment. it sounds cliché, but i have always said, “it is what it is.”
my girls were only three and five at the time of my diagnosis, so it was a matter of getting them to be okay and feel safe and not scared. we tried to keep things as normal as possible while still being honest with them. we always loved travelling, so we continued to do so.
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while i’m currently stable, we know my disease can take a turn for the worse at any moment.  that’s why we like to live life and do the things we love. it saddened me when i had to stop working as a teacher. i had been teaching for 12 years when i was diagnosed in 2013. i loved my job. i still struggle with the idea that i’ll likely never work again and feeling like i have no value in life, but i’m working on it.
i have good days and bad. the side effects of my medications can limit what i do, but i rest and relax as much as possible — netflix and candy crush come in handy for those days. having pets (three dogs and two guinea pigs) has also been a joy. they keep me busy and happy and offer so much love.

what does treatment look like?

there’s no cure for pulmonary hypertension. it’s a progressive disease, but there are medications to manage and stabilize symptoms. often you start you with one or two depending on the severity of symptoms. sometimes you need to go to three — currently, that’s where i am. in canada, there are ten approved treatments, two of which are 24 hour intravenous therapies, which are infused via a hickman catheter through the chest. i am also on intravenous therapy 24/7.

these medications are called vasodialators. they basically open the vessels to help the flow of the blood in your body. that’s where a lot of the side effects come in. there’s a lot of pain, like flushing pressure headaches and pain in my legs and feet. it affects other organs as well, like the bowels (diarrhea) and stomach (nausea and vomiting).

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the iv treatment is kind of the gold standard of treatment, and that that’s what they’ll put people on when you know the oral meds aren’t working. i’ve been five years stable with iv meds, so, fingers crossed.
if these medications fail or just stop doing what they’re supposed to do, and you’re no longer stable, then the next course is a double lung transplant.

how has ph changed your daily life?

i carry a pump that weighs two pounds. there’s a tube in my chest so it’s a lot of just being cautious and aware. i shower as normal, but the pump stays outside of the shower. that also means no swimming, so that i don’t get bacteria into the site on my chest ( because the tip of the central line sits in the blood stream outside of the heart, an infection is considered an emergency and can be life threatening).

i’ve been doing this for five years, so i am used to it. i have to change the cassette (a plastic container attached to the pump in which the medication is mixed and delivered to the body through plastic tubing that runs from the pump to central line in the chest) every 24 hours. there’s a short time which i can be without the medication — only six minutes. once six minute hits you start getting symptoms of lack of medication.

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a lot of people are scared to go on iv medication because of that reason. if you have a faulty pump or you know something’s going wrong, the alarm goes off, there’s a very short time in which to get everything working properly again.

what’s it like to live with a tube in your chest?

after the hickman catheter is inserted and healed, you basically don’t feel it at all. it’s just important to tape the line down so it’s secured, or cover it up with a dressing. it is cleaned and maintained by me — i usually clean it every few days with a chlorohexidine swab. unfortunately, my skin reacts horribly to tape and dressings, so it’s always a challenge trying to keep the area free of irritation.
hickman lines can get easily infected, so proper care of the site is important. this is my third one in three years. since i get a lot of irritation at the site, my last one actually had clots along the line so it needed replacing. i can generally do most activities while carrying the pump, but given the nature of the disease (shortness of breath), it’s hard to do anything which would require running or other rigorous activity.

you call ph an ‘invisible illness.’ how has this affected you?

i have been accosted a few times for using my accessible parking permit. i look normal and that’s the problem with this invisible illness; i don’t fit the model as someone who should be parking in an accessible parking spot. one time, i was followed by this man who said that i shouldn’t be parking there.

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i barely use the permit anymore just because of those situations. even before these situations, i avoided using it, unless it was a really hot day that would affect my breathing, or a really cold day. but now, i couldn’t be bothered.
people have to realize that those parking spots aren’t just for old people, and people in wheelchairs. people always say to me, “you look fine.” and sometimes i even say to myself, “maybe i am fine,” and then i look down at the tube in my chest.
when i was first diagnosed, i was in heart failure. i was really in rough shape. i was on oxygen. it really opened my eyes to not be so quick to judge people. before this, when i saw someone with oxygen i may have thought, ‘oh, there’s a smoker’ or ‘they must have emphysema’. you just really don’t realize how many invisible illnesses there are and what people go through.

is there a bright side?

this gives me the opportunity to be at home with my kids and be there for them. it’s also allowed me to volunteer and advocate for pha canada. my husband has always been very supportive and is a great caregiver when needed. my daughters, now aged 10 and 12 will do anything to make me happy. they understand that i can’t always do certain activities because of my physical limitations and help out in any way they can around the house.

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often ph is misdiagnosed because the symptoms often imitate so many other lung issues. pha canada has developed a fact sheet for doctors called “sometimes it’s ph”, encouraging health care teams to look beyond asthma and other lung or heart issues during a diagnosis. you can access the fact sheet here.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.

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

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