Jennifer Howard - phaware® interview 503

Jennifer Howard’s inspiring story is one of resilience and hope in the face of immense challenges. Diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in July 2019 after a long and frustrating path to answers, Jennifer faced the daunting reality of living with a chronic illness requiring continuous IV medication through a pump. Despite the overwhelming nature of her diagnosis, Jennifer discovered an inner strength she never knew she had. With a focus on living life to the fullest, she learned to navigate both the bad days and the good, embracing moments that brought her happiness and refusing to let despair take root.

My name is Jennifer Howard, and I'm from Calgary, and I was diagnosed in July of 2019 with IPAH. The day after I was diagnosed with my right heart catheterization, I immediately went on to the IV medication Caripul (epoprostenol). So I'm on a pump 24/7. I complained to my family doctor, "I'm breathless when I do stuff," and she's like, "Here's an inhaler." I was like, "Great." Then, I was like, "It doesn't work." Then, she said, "Try another inhaler." "It doesn't work."

Then, New Year's Eve day 2018, and I was walking to Walmart and I fainted. My thought process was if I make it to that light, I will be okay because I can brace myself, catch my breath. But I passed out. Some lovely people called the ambulance on me. I said, "No, no, no, I don't want to go to the hospital, because they're going to charge me $250 for me to be told I didn't eat enough food."

But then they took a EKG and they're like, "You are looking a little weird. You should see your family doctor. That took a couple of weeks. Then she said, "I'll send you for a stress test." Nothing happened with that. The cardiologist wasn't speedy, so about March, I finally got the stress test and they're like, "Nothing's alarming." Then, they said, "Oh, we'll do an MRI." They're like, "You'll hear from us in five days." The next day, I got a call. "You have pulmonary hypertension." I'm like, "What is pulmonary hypertension?" They're like, "We don't know." So we're both Googling at the same time. I'm like, "Great. I'm dying, because Dr. Google is not accurate." Within a week, I was sent to the Calgary clinic. Within days, I had my right heart catheter and I was put on the pump.

From the time I fainted until my diagnosis, it took six months. But before that, it was just years of my doctor saying, "Here, have an inhaler," because she didn't care, which is a sad thing to say, but she really didn't. I even had the thought process, before I was diagnosed, was I'm not going to see the end of the year because I was just feeling crappy.

The doctors here saved my life. I love my pump, keeps me alive. I didn't have a lot of process time, because I went from meeting my then doctor on a Tuesday to having my right heart catheter on the Thursday, to him saying, "We need to immediately admit you." By Friday morning, I had my new accessory. I was numb to the situation. Then, Sunday hit. We had this book to read about all our instructions. I had read it, but I didn't process it. Then, I'm like, "I'll read it again." I just started to cry in the hospital. One of the nurses came in and she's like, "Now is not a good time." I only let myself have that one day of just, why me? But I couldn't let myself focus on that because I was like, "I don't want to become my illness."

I came out swinging, and I tell my mom. I'm like, "I never knew until I was diagnosed that I was a fighter." Because I'm not. I'm the introvert. I'm the book nerd. "Oh, no. No people." But I was just like, "I'm coming out swinging." I took a lot of inspiration from my uncle who had a massive stroke and he had this cane, and his physiotherapist is like "Not that cane, because it makes you look sick, so we're going to give you this cane." That stuck with me once I was diagnosed. I spent a lot of time when I was in the hospital, because I had nothing else to do for two months, shopping on Amazon for things that were cute or pretty or things that just didn't make me look or feel sick ,because I was like, "No, no, no, no, no."

In the book it said something about a cooler to carry your medication because the Caripul cassette needs to stay cold. You can't just throw it in a bag and away you go. It needs to be kept cold, so that means ice packs or a cooler. That's what really broke me. I was like, "I don't want to walk around with a cooler." But I found the baby bottles that you can use to keep baby bottles cold. I was like, "My ice packs fit in it perfectly." So I was like, "I don't look sick." I have my pretty pink backpack, but just is my cold bag.

I really took inspiration from him. His doctors had no hope for him, but he and my aunt just kept fighting. I was like, "Well, if he can fight to walk and talk, I can fight to breathe." I just really used him as my barometer of doing the best I can. We all have bad days, but it's just not drowning in my bad days. Every day I get up and get dressed, even when I feel crappy, because I don't want to... Well, first of all, I have to because I have to change my cassette every day, but if I were to stay in bed because I'm a wallower, I would never get out of bed.

I know my weaknesses, because I'm a little bit of a bummer. So, I was like, "I can't wallow in my own personal weaknesses because I just want to keep going." I had two young nephews at the time. I was like, "I'm not ready to say goodbye to my nephews, to my brother, to my mom, to all my friends." I was 46, so I was like, "I'm not quite ready to go yet." I kind of kept that mentality through everything.

PH is not the same for everybody. None of our journeys is the same, and so I know I could say like, "Oh, I came out swinging," and somebody would be like, "I just don't have the energy to swing." I try not to judge how my journey has been based on theirs. Don't base your idea of swing on my idea swinging, because maybe yours is just waking up that day is your idea of fighting.

I turned into a gamer girl, so I started gaming. I'm terrible at Fortnite, but I have a lot of fun. I found people to game with. It helps because it gives me a social aspect, because I don't work. I'm on disability because of the side effects of this drug, and all my friends are working. But when I game, it's with people. I have a full-time mom who games, so I get a social aspect I didn't have before, and it's fun. I'm terrible, but I have fun. I turned into a gamer girl in my 50s.

It's funny because I never considered myself positive or even a fighter, and so that's what my illness has taught me, that I'm a fighter, that I am far more positive than I was before. I think you need to find something that makes you happy, not even passionate or... I'm not saying run out and write a book. If you can, that's awesome, but if that doesn't make you happy, don't do it. If numbers make you happy, find something that makes you happy. It makes it easier to not dread every day thinking, "I'm sick today. I'm sick today."

Some days it's just like, "I'm headachy, I'm tired. I don't want to do it." So I don't do it. We have to also let ourselves be permissioned to have our bad days, so then we can embrace the good days a little bit more. But just find something that brings a smile to your face and makes you forget for even five minutes, "I'm a sick person," because I think if it were me, if I were to spend so much time thinking, "I have a chronic illness that will probably kill me," I can't let myself think that way. It's so weird because teenage me would've moped in this. I'm surprised at what this illness has taught me and what other people with this illness have taught me. Everybody facing any chronic illness were just freaking amazing.

The first time after I got on my pump and I started feeling better, I walked across that same spot I passed out on, because I have to walk there every time I go to Walmart. I always look at it and I go, "I see you." I just keep going, because I remember what it was like to be like, "Am I on the ground? My pants are cold." So, in five years, there's so many changes happening with medications. I know we're all staring intently at Sotatercept. We're like kids waiting for Santa. That's how I get, and every question is about it. I'm hoping that drug or the next drug, and that one day I don't need the pump and that nobody else needs a pump, that friends don't have to be on oxygen, that I don't have to lose more friends. I just can't wait to see what comes down the pipe.

But for me personally, I don't know. I hope I get better at Fortnite, and I'm actually writing. But I don't know. I just keep swinging.

My name is Jennifer Howard and I am aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada