Family Shares Story To Help Other Bereaved Caregivers

Joanna had a great experience when she went to see Jonathan Van Ness’ comedy show at the Orpheum Theatre in Boston in 2019. Joanna, her husband Jeff and her sister Nicky had balcony seats, so Nicky called the box office before the show to make sure Joanna could safely and easily get to her seat. At the theater, an employee escorted them inside, invited them to join a meet-and-greet with Jonathan, and put them first in line. Joanna was thrilled when Jonathan said her hair was gorgeous and complimented the backpack for her IV pump.

diagnosed with idiopathic pulmonary arterial hypertension (PAH). Her family had heard of hypertension, but not PH.

Life After Diagnosis

In 2016, Joanna Grey and then-fiancé

Jeff Dunn were walking through their Boston-area neighborhood when she was hit with significant chest pain. She thought she was having a panic attack, so her family convinced her to see a doctor who walked her through how to manage anxiety and stress.

Joanna, who kept active through neighborhood walks, regularly running and attending spin class, thought the advice made sense. She had been experiencing breathlessness and chest pain for about a month but pushed through as much she could. Doctors attributed her symptoms to panic attacks. But her symptoms continued, and she suspected something was wrong. She was diagnosed with PH later that year.

Jeff and other members of Joanna’s family shared her story with the

Pulmonary Hypertension Association (PHA) as they grieve her 2021 death from complications due to transplant surgery. They want to encourage other bereaved caregivers that hope and community can be found in the darkest places.

Journey To Diagnosis

Throughout 2016, Joanna had more episodes of breathlessness and dizzy spells. She once passed out while walking up the stairs, but her doctor said it was stress. When she told her family about fainting, they urged her to seek medical help.

Jo went back to the doctor and was placed on a heart monitor but was sent home. Later that evening, she had another episode. Jo and Jeff rushed to urgent care only to be told again that she had anxiety. With urgent care resources limited, the couple asked about going to the emergency room. They were discouraged to go and told it would be a waste of time.

Turning Point

Nov. 20, the day after Jo’s birthday, was like any normal day for her and Jeff until Joanna collapsed in the entrance of a Target. After being rushed to their local hospital in Norwood, Massachusetts, a doctor mentioned the possibility of pulmonary hypertension.

“They talked around the disease like, ‘We think it might be pulmonary hypertension,’ Jeff says. “Then a doctor came in and dropped a whole bunch of stats, price, costs and stuff like that. It was a horrifying experience.”

Joanna was transferred from Norwood to Beth Israel Hospital in Boston, where she immediately had a right heart catheterization and was

Jo tried many different medications to help with her symptoms, including sildenafil, Opsumit and Uptravi. She switched often because the medications didn’t work as well as they had hoped. Jo experienced many of the side effects listed for each medication: “Leg pain, nausea, diarrhea, it was every day,” Jeff recalls.

Jo moved to intravenous medications like remodulin and Veletri. The switch was daunting, but Jeff took over her care and made sure everything was done properly. “It was my way of controlling the uncontrollable,” he says.

Jo powered through her discomfort and fatigue as she continued to work full time and be a mom, wife and sister. Very rarely did Joanna share her reality as someone who was sick with an invisible illness.

“She’d go to work, not be late, be sick at work, and call me to bring her a change of clothes so she could keep the perfect person for Jo at the time, very calm and comforting. Her second doctor, Alison Witkin, was amazing in a different way. She was tireless and a bulldog advocate for Jo while we were figuring out her transplant.” going,” Jeff says.

Jo was transferred to Dr. Witkin. when her condition started to decline. When her surgery at Brigham and Women’s Hospital fell through, Dr. Witkin set them up on an alternative course with UPenn.

In 2019, after battling her employer for accommodations, Joanna’s family convinced her to leave her job. That put a whole new stress on her family.

“As much as I recognized the progression, sometimes you didn’t notice it because you were in it every day, you know? It’s much different living with someone who is sick like that,” Jeff says. “You can’t live your life thinking the worst things will happen, and it’s hard when they do.”

Finding Hope

Jo and her family found a huge source of hope in two of her doctors: Barbara LaVarge M.D., and Alison Witkin, M.D. Though opposites in demeanor, they were the advocates that she needed, her family says.

Dr. LaVarge suggested the family check out PHA. Before the pandemic, Joanna, Jeff and their family participated in two PHA O₂breathe walks in Boston. At the fundraising events, they met many other patients and caregivers, giving them a sense of community.

“Barbara LaVarge was just an amazing human,” Jeff says. “She was

Jeff says the whole family needed those doctors. They needed someone in their corner to advocate for them and fight for Jo after so many people had dismissed her. Those doctors instilled hope in the unknown and stood up for the patients and families battling these invisible illnesses, Jeff says.

After Joanna passed from transplant complications in 2021, her family has been striving to keep her memory alive. They continue to get together, remembering the good times and their independent and sassy Jo. Her experience taught them how short life can be and how important it is to have someone in your corner as support.

With their loss still fresh, the family is brainstorming with PHA on ways to keep her legacy alive. The family encourages those who are feeling lost and hopeless to reach out to their communities, support groups or trusted health care professionals.

Learn about free bereavement resources at PHAssociation.org/ bereavement. Memorialize your loved one through a one-time gift of cash or other assets. Or consider making a recurring donation.PHAssociation.org/ donate /information.