‘It’s been gratifying to see awareness for this rare disease grow over these past two decades, and I try to do my part to spread the word.’

Elise Zwicky lives with her husband and two cats in Urbana, Illinois. She is a freelance writer and editor. She enjoys reading and spending time with her three adult children and 7-month-old granddaughter.

By Elise Zwicky

The first time I remember feeling short of breath, I was pulling my then-3-year-old son in a wagon to pick up his 7- and 8-year-old sisters at school. The route had some hills, but I had never gotten winded before. I was a busy 37-year-old wife, mom of three and part-time journalist, so I just chalked it up to being overextended and a bit out of shape.

Nine months later I was still getting short of breath and noticed some heart palpitations, dizziness and extreme fatigue. I thought I was just out of shape, but I went to my primary care doctor to make sure I was OK. It turned out I was not OK.

An electrocardiogram and X-ray showed abnormalities. The doctor thought maybe I had had a heart attack and sent me to the emergency room of our small-town hospital. Eight hours later, after the on-call cardiologist examined me and looked over my test results, I heard the words “primary pulmonary hypertension (PH).” He said I might have three to five years to live. That was February 2000.

I went home to cry, but my sister, Rita, and my husband, Fred, jumped on the internet and found the Pulmonary Hypertension Association (PHA). Seventeen days later, I had an appointment with PH specialists Stuart Rich, M.D., and Vallerie McLaughlin, M.D., at Rush University Medical Center in Chicago, a three-hour drive from our home.

A few weeks later, my first right heart catheterization showed my pulmonary artery pressure was 57 and that calcium channel blockers could help lower the blood pressure in my lungs. The only targeted medication for PH at that time was Flolan, which required a permanent catheter in the chest.

Successful therapy
I had never been able to swallow pills before, but I learned how with the help of an incredibly kind nurse. It’s still hard for me to get them down sometimes, but I’m grateful that the high dose of the calcium channel blocker, Norvasc, still works for me 21 years later.

During my last right heart catherization, my pulmonary artery pressure was 22. I also take Coumadin, Lasix and potassium. I took Digoxin until my heart returned to almost normal size and started beating more efficiently.

It’s been amazing to watch the research that has led to so many treatment options for PH. Even the name has changed from PPH to pulmonary arterial hypertension (PAH). It’s been gratifying to see awareness for this rare disease grow over these past two decades, and I try to do my part to spread the word.

My biggest fear when I was first diagnosed was not being able to see my children grow up. My oldest daughter, Megan, 30, is a math teacher and the mother of my first grandchild, 6-month-old Clara Rose. My middle daughter, Kristen, is a family medicine physician in California. My son, Sean, is a fourth-year medical student in Chicago.

Even though PH is an undeniable part of my life, I have hope that my husband and I will grow old together and I will live to see Clara and my future grandchildren grow up.

Finding support
Something that really helped me get through that first year was attending PHA’s International PH Conference and Scientific Sessions, which was held in Chicago four months after I was diagnosed.

My family and I have attended as many PHA conferences as we could since then, and I’ve developed many friendships with other patients. In the early years, we talked by phone and email, and now we help each other through Facebook support groups. Sadly, I’ve lost a few of those friends to PH over the years.

Elise shares her story as part of PHA’s 30th anniversary celebrations. If you’re a long-term PH patient or caregiver, submit your story to PHA’s Right Heart Blog.

Read more first-person stories from people with PH, caregivers, families and friends, here.