November is Pulmonary Hypertension (PH) Awareness Month. In honor of PH Awareness Month, I will be sharing patient profiles about special members from the PH community. Please be sure to visit throughout the month of November to read more PH profiles.
Although Miriam was recently diagnosed, she suspects she had been living with IPAH for at least two years before her official diagnosis. During her IPAH diagnosis, it was discovered she also has a congenital heart defect.
Currently, Miriam says, “I believe my specialists would say my general condition has improved, although I remain in moderate heart failure.” Miriam also notes that she felt a difference a few months after starting dual combination therapy, although the side effects of the medications are a daily battle for her.
“I can now climb a small set of stairs if I have to, which was very difficult before, although I still get winded and have to catch my breath afterwards. A large part of my blood oxygen desaturating upon any exertion is due to blood shunting across the chambers of my heart through the defect, so unfortunately, oxygen therapy is not able to help me at this time,” Miriam said.
Miriam’s life has changed a lot since her diagnosis. Her energy is limited. She notes that although she has some good days, she often feels exhausted. “Sometimes, I’ll need several days of rest to recover from a single day of activities, which would have just been a normal day before, ” she says. “I used to work about 50 hours a week, constantly active and on my feet, and I can’t ever fathom being able to do that again.
“Receiving an exact diagnosis can be both a relief, because you get confirmation that your gut feeling that something was wrong was correct, and also validation that you really need help and accommodations.”
Miriam also understands how terrifying receiving a pulmonary hypertension diagnosis can be. She was diagnosed by a cardiologist who did not specialize in PH, so they were unable to make any statements about her initial condition or prognosis. She was told to go home, rest and enjoy the holidays with her family while a PH specialist got back to her.
“I had no idea what would happen next, and those weeks of being in the dark were torturous,” she says of waiting to see a PH specialist after her diagnosis. “Once I saw a specialist, and received more information about my concurrent conditions and began treatment, I felt a bit better. But as PAH patients, I think we still have to face many unknowns every day. … I took some time off school to process everything that had happened and to get through the initial side effects of the PH medications, as I had serious side effects from both for several weeks.
“Afterwards, starting a small knitting business helped me cope and slowly come back to the world of the living, at least, that’s how I see it.”
As for what advice she would have given to herself upon diagnosis, Miriam says, “It’s been a slow process, but lately, things have finally really sunk in, and I’ve finally started to ask for, and use, accommodations when I need them. When first diagnosed, it can be difficult to change your mindset and really admit to yourself, not to mention other people, that you need these things. So, my advice to myself when first diagnosed would have been to let go of past views of myself, and really focus on what would work best for me now, especially if that means asking for help and accommodations, and on being a strong self-advocate.”
Even though Miriam is nearly one year post-PAH diagnosis, she has returned to school to finish her degree. She also continues to run her knitting business on the side. Although some days can be overwhelming, she is glad to use her knitting business as a way to keep her busy. It also allows her to have a healthy distraction and she enjoys the challenge.
Miriam still has more planned on her horizon and doesn’t intend on letting her diagnosis stop her. “I want to travel after my graduation,” she says, “and I’m not planning to let my PAH get in the way of that! So, for now, I’m happy with what I’m doing.”
In honor of Pulmonary Hypertension Awareness Month, Miriam is also raising funds for Toronto General & Western Hospital Foundation in support of in support of Dr. Granton’s Pulmonary Hypertension Program Fund and the Adult Congenital Heath Disease Fund for Excellence.
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.