“What do you want to be when you grow up?” That is a question most are asked when they are a child. As you reach young adulthood the phrase changes. “What do you plan to study?” “What do you want to do with your degree?” Where do you see yourself in five years?”
Here I am at age 28, and my life is nothing like I intended it to be. You work so hard to reach your goals, and a big illness like pulmonary hypertension comes and turns your whole world upside down. When I was diagnosed at age 25, it felt like my life completely derailed — and maybe it did. Suddenly my goals and dreams weren’t mine anymore.
The first year after diagnosis was incredibly hard. I went back to work while on oxygen and realized 10 months later that my job was making my condition worse. I was living to work, which is a situation I didn’t want to be trapped in after learning about how precious and fragile life is.
This was certainly not where I wanted my life to be, but it felt like pulmonary hypertension took away my control. Suddenly my life revolved around my health. Career and children were out the window. When people ask me where do I see myself in a few years, my heart sinks a little. There’s a little voice inside of my head that wonders if I will still be alive, or will my condition be worse? If you had asked me five months leading up to my diagnosis where I thought I would be at age 28, this scenario would have never crossed my mind.
I should have moved out of my parents house.
I should be married.
I should have a career.
I should be pregnant.
I hit a point where I realized I had to either adapt, or stay stuck in the crippling depression I was in. I am lucky enough to have my parent’s support, so I decided to start writing more personal posts for my blog. I even started freelance writing for various websites (emphasis on the word “free.”) I learned that as my life changed, my goals changed as well.
At first I was hesitant to get involved with pulmonary hypertension advocacy. I didn’t want to become too involved in the world surrounding the illness I had. I thought I needed separation, but then I realized that my goals had changed. I want to help make a difference for patients living with pulmonary hypertension by trying to raise awareness for the disease. I tried to use my voice to show my experience as a young adult adapting to life with pulmonary hypertension.
Shortly after I became more involved in the pulmonary hypertension community, I realized that the United States has access to more treatment options than where I lived in Canada. (I know that this is the case around the world including South Africa and much of the U.K.) After learning that, my new goal became something different. I wanted to help get pulmonary hypertension patients in Canada access to more treatment options. I think it is very important to have more options available to us. They have the potential to keep patients stable longer and to help patients stay on less invasive medications, like oral and inhaled treatments, longer as well. These medications can help give patients a better quality of life, which I think is important for every pulmonary hypertension patient to be able to access.
Although I had dreamed of starting a petition to help Canadians living with pulmonary hypertension like myself gain more access to more treatments, I avoided acting on anything for a long time. I know that it is difficult for one voice to make a difference, but I also knew that there are many voices who feel the same way I do.
In January 2016, Uptravi was approved for Canadian use. As of Sept. 13, there has yet to be any public funding for it — meaning the majority of pulmonary hypertension patients don’t actually have access to the medication. Something similar happened when Opsumit was approved for the Canadian market about two years ago — but never received public funding. Canada has two newly approved medications that the majority of pulmonary hypertension patients don’t have access to. Doctors cannot even prescribe these medications, even if they believe it is in the best interest for patient, unless the patient has private insurance that will cover or they can pay out-of-pocket. (It is important to note that insurance and healthcare in Canada is very different from other parts of the world.)
Medications like Tyvaso or Oreintram have never even been introduced to the drug market here. Mostly because of Canada’s smaller drug market and the limitations set in place in terms of the cost of medications and treatments. Sadly, many Canadians with a rare disease face the same issue with accessibility to treatment options.
I finally decided last week that I am going to stop dreaming about making a petition to help Canadians gain access to more pulmonary hypertension treatments. This was probably a huge relief to my boyfriend because I had been mentioning this idea on a weekly basis to him, and then talking myself out of it! I had been afraid of failure, but then I realized I wasn’t scared anymore. Not trying seemed like it would be the biggest loss.
I realize that pulmonary hypertension has changed my goals and, perhaps, my fears. I’ve also adapted some of my personal plans in hopes of still making them come true someday. I try to live in the moment, but sometimes I dream of the future as well. I hope that there are still many good and even great things possible for me. I’m not sure where I see myself in five years, or what I want to be when I “grow up.” I hope that I will be in good condition, living in a bungalow with my boyfriend and our dogs someday soon. I’d like to write a book one day, or maybe be a comedy writer. I want to be a better person. I want to laugh more. Hug more. Smile more. I want to fully and completely enjoy each meaningful moment of my life.
I want to help make change happen — and even if I can’t, at least I tried. To help me with my new goal of making more pulmonary hypertension treatments available and accessible to Canadians, please sign my petition.
If you want to help raise advocacy for pulmonary hypertension where you live, please contact the closest pulmonary hypertension association near you.
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.