Ann Socolofsky of Sioux Falls, South Dakota, was diagnosed with pulmonary hypertension in 1998. Now 65, she still works as a physician and is developing a coaching business to help women manage life-threatening illnesses like PH. Socolofsky originally shared her story with Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine.

By Ann Socolofsky

I was a practicing family physician when I was diagnosed with pulmonary hypertension. At that time, I worked with a doctor training in pulmonology, and she told me what tests I needed to assess my shortness of breath.

After three or four months, we were convinced it was PH. When I went to a cardiologist for a right heart catheterization, he said it wasn’t PH and ordered a treadmill test instead. I was so happy for a week, but I nearly passed out during my treadmill test (a really bad idea for someone with PH). The cardiologist then administered a right heart catheterization and diagnosed me with PH.

Adapting to new normal

When I was diagnosed, I was newly divorced with children ages 7 and 9. I had to change my work situation immediately because I couldn’t do the typical on-call regimen that most practices expected. This was before telemedicine and other flexible opportunities for physicians, so I had to create my own way to continue in medicine. I created a specialty practice and explored new opportunities as they came up.

Being a patient is a good way for doctors to understand the “other side of the stethoscope.” I diagnosed two cases of PH after I was diagnosed because I understood the symptoms. I think pulmonary hypertension is greatly underdiagnosed because the symptoms are so non-specific.

Identifying effective treatment

Early on, I was lucky enough to participate in the original trials for Remodulin, and I’m still on subcutaneous Remodulin. The hardest part has been dealing with the site pain, which is sometimes severe.

Many doctors don’t put people on the subQ pump because patients don’t like dealing with the site pain, so I’m glad I had the opportunity to participate in the clinical trial. I am an anomaly whenever I go into the hospital because of the pump I use.

As different PH treatments emerged, I tried them because Remodulin worked so well for me, and I thought new treatments might work too. However, most of them made me very sick, except Adempas, which I’m currently on.

Treatment challenges

Changes to my treatment, like when drug manufacturers change how Remodulin is delivered, often worsen my quality of life. For example, the company who makes my pump decided to change pump styles by shortening the tubing from the site to the pump. Now it’s going to completely change to a new subcutaneous system.

I researched the new system, and it will make my life more difficult. I will have to use a lithium battery and recharge the battery frequently. In contrast, I now just pop a new battery into my pump. Because of the frequent recharging, it’ll be harder for me to go camping or travel to places without electrical outlets.

I have been delaying switching over, but my current system is being eliminated. I’ll eventually be forced to change. Making a change like this and being forced to give up a portion of my freedom is mentally challenging.

I feel these companies make changes based on their business models rather than what fits patients’ lifestyles.

Can-do attitude

The key factor to manage treatment and other changes is determination.

When I was diagnosed, I noticed a trend among some people with PH and other medical problems, where someone would have a bad day and tell themselves, “I can’t do this (for example, I can’t walk a mile).”

Then, the next day they would walk a shorter distance, and each time they struggled, they responded by decreasing what they were doing. Their lives then become more and more limited.

But I believe the way to stay active is to do some activity every day. My goal is to walk one mile daily. Sometimes that is just walking around my house (I have measured out a trail and use a pedometer).

When I’m feeling down or not in the mood, my approach is to think, “Wow, I can’t do a mile right now. I will take a break and then finish it. Or I will come back tomorrow and do it.”

I will find ways to make walking or any activity easier, such as walking with one of my sons, walking indoors or listening to music. It’s so important to focus on what I can do and not my limitations.

Staying motivated

I always listen to and work with my body, but I also struggle to defeat that little voice in my mind that tells me I can’t do something. I have to push myself to avoid the easy way. The easy path is often a road to defeat.

I plan on pushing myself to find another personal trainer, as that has worked for me in the past, and joining a dance class that fits my activity level.

I have always wanted to look for rocks, so I joined a local group that does gold prospecting and rock hunting expeditions. Some members are older and have their own medical problems, so they are very tolerant of my limitations.

I’m also working on a new coaching program to help people manage life-threatening diseases like PH, which includes ideas that have worked for me. I created a four-part program that deals with emotional, physical and spiritual actions to improve one’s quality of life. I also discuss environmental factors and how to navigate the health care system.

Beacon of hope

I still do everything I want to do. I still practice medicine, mostly through telemedicine, and I stay active, either by myself or with the people I love. My sons and I have taken classes in woodworking, cooking and pottery together. Even though they are grown now, we still find time to do things together. What means the most to me are the memories we are creating.

It is so easy to feel limited, but those with PH or any chronic condition can find a way to push past that mindset and learn to live again.

I always tell myself, “I can do anything anyone else can do. It might take me longer or I might have to find my own system, but I can do it.”

Perhaps my story can provide some hope for other people with PH.

Read Pathlight magazine to discover other inspiring stories of people affected by PH and news about events, treatments and more. Not a member? Join today to receive Pathlight in the mail or digitally. Share your own story to be featured in Pathlight or PHA’s Right Heart Blog.