Our Journeys


Click the linked names to read the full Journeys

Nancy Leaman - Caregiver to her mother Linda
Before I ever knew what it meant to be a caregiver, before I ever heard of an illness called pulmonary hypertension, I read a Reader’s Digest article about a hospital volunteer position called hand holding. A hand holder sits with a patient, before or during surgical procedures, offering the physical comfort of his or her presence through the simple but profoundly human act of holding hands. I remember thinking, “I’d like to do this someday.” And now I do.

Michael Rivera - Caregiver to his wife, Delia
I was at the mall with my wife Delia preparing for our upcoming move to Europe when she first experienced symptoms of PH. We were about to take the stairs to the second level when she became faint and could not climb them. I took her to the emergency room, but they could not find anything wrong with her, and told her to see our family doctor the next day. I will never forget when the doctor told me to follow him to a private room.

Karel Schulz - Caregiver to her mom Jean Schulz
Pulmonary Arterial Hypertension. Those words are what changed my life completely. I was only 13 years old when my mom, Jean Schulz, was diagnosed. Now, as a thirteen year old, you could only imagine what was going through my mind. We spent little more than a month in Denver at the hospital. It was pretty hectic for my dad and me to be in such a big city, seeing as we are just some country folk.

Jayna Wall - Caregiver to her son, Jackson
Jackson, our little 14 month old baby boy, has been diagnosed with idiopathic pulmonary arterial hypertension (IPAH). Up until this point, Jackson has seemed perfectly healthy. We had no idea or indications that anything like this was occurring in his little body.


PHA does not recommend or endorse any specific physicians, products, procedures, opinions or other information that may be mentioned in these stories. Reliance on any information appearing on this website is solely at your own risk. Stories shared on this website are general information and are not intended to substitute for informed professional advice. Each person is different and as such, may respond differently to treatments, thus the stories are shared with the hope that they may be helpful for those who choose to take a greater responsibility for their own health. Always seek help from a health professional.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.