In memory of a beautiful life and a mountain well climbed

Caregivers to loved ones are often metaphorical mountain climbers who begin their journey without prior experience or training. Equipped with the power of love and the persistence of hope, they move forward with all the emotional, mental, and physical strength they can muster. While chased by a diagnosis, caregivers help carry the afflicted from one safe overlook to another, where quality of life is a breathtaking welcome, unlike the oxygen deprivation that a disease like pulmonary hypertension (PH) can cause.

Many have faith that the final overlook is heaven, but whatever your belief, it’s heartbreaking when the end of life’s journey is reached seemingly too soon. While love helps a caregiver climb the PH mountain, it can feel like an unbearable burden to descend it alone.

November is both PH Awareness Month and National Family Caregivers Month. In honor of the two, I interviewed Kate Berry, 41, from Stratford-upon-Avon, England, via email. On Aug. 27, her father, Bernard Berry, from Banbury, Oxfordshire, England, passed away at the age of 79 due to pulmonary sarcoidosis, severe PH, and other comorbidities.

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Bernard Berry enjoys a family fishing day in Stratford-upon-Avon, England, in October 2017. (Courtesy of Kate Berry)

After losing her dad, Kate began looking for a PH forum for those who are grieving, but she couldn’t find anything specific to her needs. A Google search led her to the PH News Forums, where I serve as a moderator. While these forums primarily offer support, advocacy, and awareness tools for patients living with PH and their caregivers, we would never turn away a “PHamily” member who is grieving. Forums that support people through all stages of PH are just as valuable as a doctor’s care.

“It would be nice to speak to family members who lost their loved ones to PH,” Kate suggested, “to share memories and speak about the dreaded end of the fight against PH.”

We at the PH News Forums were listening and now offer a sub-forum titled “Grief and PH,” where those who are grieving can find understanding and compassion. People living with PH can find inspiration and guidance in the experiences shared by the families of those who have passed away.

Defying the prognoses

Kate’s family believes that Bernard’s sarcoidosis was caused by his work as a professional painter, and that, in turn, led to his PH. He was diagnosed with both conditions in September 2004 and was referred to Royal Papworth Hospital, a leading heart and lung hospital in the U.K., where he was given six to nine months to live.

Kate was 20 when her dad was diagnosed and had just welcomed her first daughter. She feared her dad would never get to meet his granddaughter. But Bernard surprised everyone. For 21 years, he defied the odds, enjoying a quality life that included cherished outings to antique centers and a family fishing holiday eight weeks before his passing.

Kate credits her dad’s long-term survival to a caring family, excellent medical care, and the lifesaving drug Tracleer (bosentan), supplemented with Revatio (sildenafil). “His breathlessness improved, and he felt stronger” after treatment, Kate said. Supplemental oxygen also helped him sleep at night, but he began to rely on it full-time two years ago.

After many tests, Bernard had been placed on the lung transplant waiting list. He was provided a pager for when a donor became available, and they had planned for his transportation to the hospital when the time arrived.

He eventually received a call, but not the one he wanted. A doctor in Germany had looked over Bernard’s test results and determined that he wasn’t eligible for a transplant because one of his arteries was enlarged.

Bernard faced another serious medical challenge when he was diagnosed with bowel cancer in 2010. He underwent a major operation and yet again amazed his doctors by getting through it. “We always joked that Bernard Berry is in the building,” Kate laughed.

Caring for Bernard

Bernard’s primary caregiver was his wife, Jane, who is 72. She has severe osteoporosis, so Kate helped out by taking her dad to doctor appointments.

From left, Jane, Bernard, and Kate Berry celebrate Christmas at home in 2019. (Courtesy of Kate Berry)

“Right up to the end, Dad was still carrying out his personal care,” Kate said proudly. A walk-in shower was installed in her parents’ home, and her mom would be ready with oxygen the moment her dad stepped out of the shower. She also helped dry his hair, especially when he could no longer lift his arms above his head.

Kate fondly recalls how much her dad loved hearing her voice on the phone or when she would walk through the door. Her advice to caregivers is to always be there for their loved ones.

“Keep them in the loop with even the most trivial parts of your day,” she said. “Remember, it’s not their fault they’ve become housebound. Always set goals, however big or small, giving the loved one a purpose.”

Kate knows in her heart that Bernard’s advice to others living with PH would be to never give up hope, especially because medicine is always advancing.

“Talk with friends and family, and keep fighting,” she said, “because the fight isn’t over until it’s over.”

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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.