This article is the second in a series on “Intimacy and PH” in Pathlight magazine that explores people’s experiences in balancing love, dating and finding romance with pulmonary hypertension. Pathlight is the official magazine of the Pulmonary Hypertension Association. Packed with medical information, personal stories, pulmonary hypertension news and tips for life with PH, Pathlight connects the PH community with valuable information for living with this rare disease. Become a member of PHA to receive this quarterly publication and other member benefits.
When you have been married or in a long-term partnership, you become settled in a specific way of life with your “other half.” But what happens when you or your partner receives a major life-changing diagnosis like pulmonary hypertension (PH)? Pat Ofori, 63, was diagnosed with pulmonary hypertension associated with scleroderma. She is in a common law marriage with Bobby Zani, 66. I this Q&A, Pat and Bobby tell their story.
How long have you been together?
Pat: We’ve been together for 11 years.
Bobby: We’ve been together 13.5 years, she can’t count! I have it in my calendar and I can tell you exactly when our anniversary is: July 23, 2003.
How did you meet?
Bobby: We met through the Yahoo dating site. I’m from the Bronx, and she’s in New York – Manhattan – and we would have never met without this. I finally got the courage to call her and we went on a date and we’ve been together ever since.
How did you find out that Pat had PH?
Bobby: She got sick right after she retired from work, and she had this problem with the arteries in her foot. So she ended up going in the hospital and, before you know it, they amputated twice: once below the knee and, when that didn’t work, above the knee. She spent a lot of time in the hospital. She had depression and moved into different nursing homes … while she was out there, a doctor put a stethoscope to the heart and he said something’s wrong. She was transferred to NYU and went to three doctors before she had found one that really listened to her to help her manage her PH.
How has the relationship changed from Bobby just being a boyfriend to becoming a caregiver?
Pat: Well, after I had the amputation, I asked him if he still wanted to be with me and he said it’s cool. The true test of a relationship is when one acquires an illness. I had retired, made plans for the future, but sometimes you can’t always plan for this. My life changed unexpectedly by becoming an amputee first and then with the diagnosis of PH. I had already asked my Bobby if he wanted to stay in our relationship or leave and he said, “you are still the same person,” and he was not leaving. Of course, as a couple you still have ups and downs, but we work it out.
Has your life changed since you became a caregiver?
Bobby: No, I love her and I don’t mind doing anything differently. Even before she was sick, I was always close to her and made sure she’s okay. She’s also very independent, she doesn’t believe in sitting in the house. The only time she likes to be at home is in bed.
Were you concerned that your relationship might suffer because of the illness?
Pat: Oh yeah, absolutely. Intimacy and having sex were difficult because of positioning. Sometimes I would get out of breath. We just talked it through and worked it out.
How has Bobby supported you through your PH journey?
Pat: He’s really caring and talks to me and is more aware of my condition. He kind of knows and “gets it” when I’m feeling good or not feeling good. He’s just so much involved and loving. He still treats me normally when we have our relationship conflicts.
What do you do to keep the romance alive after 13 years?
Pat: It’s a lot of talking, saying “I love you.” We also try to travel, have fun, see movies and go out to eat. We enjoy each other’s company.
Any advice for other guys who are in a long term partnership with someone diagnosed with PH?
Bobby: If you care about them, then the pulmonary hypertension doesn’t mean anything. If it bothers you, move on and let them find someone who cares.