After undergoing a right heart catheterization in late December 2022, I was diagnosed with pulmonary hypertension. As I was getting ready for the cath in the hospital, my oxygen was taken several times by the nurses. Upon seeing the numbers, the nurses’ expressions changed. “Are you on oxygen?” one of them asked. At the time, I wasn’t.

My oxygen saturation was low. In fact, when I got into the cath room, the doctor said that she was not going to be able to give me all of the conscious sedation medication because she was concerned about my oxygen levels. She ordered oxygen for me to have during the procedure.

Afterward, a pulmonologist came to see me and told me that oxygen was being ordered for me and would be at my home the next day.

Oxygen therapy and pulmonary rehab

I had been experiencing symptoms – mostly shortness of breath – for several months before the right heart cath.

The diagnosis of PH came three and a half months after my husband of 54 years died of lung cancer and cardiac arrest. Although I had known that Jerry’s chances of survival were not good because of the lung cancer, his death from cardiac arrest was sudden and unexpected. Even his oncologist was shocked.

I am blessed to have a large and loving family. We had all been attempting to adjust to Jerry’s death when my diagnosis happened, right before a post-Christmas large family vacation in the Poconos. But I was still able to make it. My oxygen arrived at my house at 9 a.m. and my oldest son, Jay, picked me up shortly and drove us to the Poconos.

Not long after that vacation, I began attending pulmonary rehabilitation twice a week. I brought my portable oxygen to each session. During the exercise time, I used the center’s continuous oxygen.

Using oxygen on a 24-hour basis was very challenging. I was extremely self-conscious. Anywhere I went, it seemed like I was the only one using oxygen, even in my rehab group (this changed over time).

Seeking additional help

Meanwhile, oxygen was the only treatment I was getting for PH. My pulmonologist at the time suggested that I look up Noah Greenspan, a physical therapist who had many resources for people with pulmonary issues.

Through him, and the help of my goddaughter, Amanda Aninwene, a family physician, I started to suspect I wasn’t getting the best treatment. Noah helped me connect with Hooman Poor, a PH specialist who works at Mt. Sinai Hospital Health System.

It took some legwork, but I finally got an appointment to see him. I breathed a sigh of relief and gratitude.

New doctor, new medicine, new hope

My first visit with Dr. Poor and his marvelous nurse practitioner partner, Simone Hanna-Clark, was April 27, 2023, four months after my diagnosis. He seemed upset and concerned that nothing more had been done by my previous doctors.

He explained PH and discussed some treatment options. Both he and the nurse practitioner gave me their cellphone numbers. I began to feel hopeful for the first time since the diagnosis.

Having the consult with Noah Greenspan and then following through on his suggestion to see Dr. Poor may have saved my life.

Finding support

I started two medications, Adcirca (tadalafil) and Opsumit (macitentan). I also joined the Pulmonary Hypertension Association and began participating in the Delaware Valley PH support group. The group is small, but it provided vital support for me when I was diagnosed.

I also participate in two other support groups run by The Pulmonary Institute at Mt. Sinai, one for pulmonary issues and one specific to PH.

As a social worker, I know the importance and value of support groups. In the groups, you get to hear other people’s stories and experiences. You don’t feel so alone. You also have access to information about treatments.

For example, through the PHA support group I learned there was a new medication on the horizon called Winrevair (sotatercept). I told Dr. Poor that I was very interested in trying it when it was approved by the FDA, which happened in spring 2024.

I kept using oxygen and attending pulmonary rehab. However, I hated being on oxygen and was very self-conscious about it. My medical teams sympathized but didn’t think I would be able to get off it.

Almost back to normal

After it was approved, Winrevair was added to my other two meds. Now that I have been on it for two years, my life has almost returned to normal. I have been off oxygen for a year, needing it only once when I got the flu.

In addition to a great medical team, my super group support, a “miracle” med, a positive, proactive attitude, strong faith and meditation have helped me through this challenging condition. When I was practically housebound on oxygen, I had frequent visits from my pastors, friends and family.

I also set goals and made frequent progress notes to encourage myself. Evening meditation and prayer steadied my mind and helped to quell my fears. I feel like I have gotten my life back, and I am most grateful.