30 Days of PH: My Hopes While Living With PAH in Bermuda

Photo courtesy of Charlita Hayward

Day 18 of 30

This is Charlita Hayward’s (@haywardcharlita) story:

I am a 33-year-old mother of two sons, 11 and 9, and am engaged. I live in Bermuda, and have idiopathic pulmonary arterial hypertension (IPAH).

I was diagnosed in August 2020 after noticing pressure and swelling in my feet and legs. I felt in my chest that I could not walk very far. That led to a three-week stay in the hospital. I’m no longer able to work and must see my lung specialist every four months.

My firstborn son died of PH when he was three and a half months old. Now 12 years later, I am dealing with my diagnosis and praying it is not hereditary. My lung specialist must do a test to find out.

I was sick again at the end of January 2021 and was flown out of Bermuda by air ambulance to Brigham & Women’s Hospital in Boston. I spent a month in the hospital undergoing a right heart catheterization and starting treatments for IPAH. It was an experience I will never forget.

When I left the hospital in Bermuda by air ambulance, I was on 10 liters of oxygen and now I live on five liters. My saturation levels are unable to stay at 95 on their own and drop when doing normal activities. For this reason, I am on home oxygen and use portable oxygen when I go somewhere.

In September, I caught COVID-19 pneumonia. It was a battle and caused me so much anxiety. I am just glad to make it out of the hospital and thank God every day for seeing me through that experience.

No two days are the same when dealing with PH. Walking makes me tired and out of breath, so I use a walker. I try to stay within a daily two-liter fluid restriction. I eat fruits, vegetables, chicken, fish, sometimes steak, and no dairy due to an allergy, and limit my salt intake to 2 mg daily. I exercise as tolerated.

My hope is that a cure is found for this rare disease and that, one day, Bermuda will have a PH clinic and more lung specialists to help patients like me.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.