Patient Mentor Spotlight

Carson Smith

Carson Smith
PH Email Mentors are patients and caregivers standing by to help other patients, caregivers and parents through one-on-one, email-based support. Carson Smith is one of those mentors, and she shares a little about herself here.

What’s your PH story?

I was a super athlete until I started to have breathing trouble with physical activity. Initially, I thought I had asthma because I recognized the symptoms from a friend. I got an inhaler, but it didn’t help, so I went to get evaluated. One of my doctors told me that my symptoms were caused by hyperventilating, which I knew wasn’t the case. I continued to have symptoms, so in eighth grade I went to a cardiologist. When I was in tenth grade, my doctors sent me to the St. Louis Children’s Hospital, and I was diagnosed with PH. I was put on a heart catheter to use when I was exercising, because I was (incorrectly) diagnosed with exercise-induced PH. That same year I was sent back to St. Louis Children’s Hospital to have an open-lung biopsy. The doctors diagnosed me with pulmonary veno-occlusive disease, with PH secondary. I still go to St. Louis for my medical care, and my doctors are great.

Eventually, my doctor told me that I could continue exercising as long as I didn’t overdo it. I dance and now I do yoga three times a week. I know my limits pretty well. There are times when I need to slow down. Every yoga instructor I’ve had has said, “Know your limits.” I would encourage other PH patients to let instructors or coaches know ahead of time that you have PH. I have learned to differentiate being out of breath because I am out of shape and being out of breath because of my PH.

What advice would you give other young people living with PH?

The best thing I have ever done is choose to be optimistic and positive. On my bad days I say, “At least it isn’t like this every day.” My doctors have told me that’s partly why I’ve been coping so well with this disease. It can be difficult to be always optimistic, but I believe in not letting PH define me. I have struggles with my PH, but I find ways to live with it. For example, I went camping, and I wasn’t sure how I would do with the altitude. When it got to a point where the altitude started to affect me, I said, “I think I’m going to wear some oxygen.” I also haven’t let PH get in the way of my education; I completed a Master of Public Administration in May before starting my Master of Public Health this past August. In keeping with not letting PH define me, I don’t feel obligated to tell people that I have PH. I also have things in my life that are not PH-related; I feel that is empowering. What has also helped me has been having a hobby or something I do on a regular basis that I look forward to.

What does being a PH Email Mentor mean to you?

I chose to be a PH Email Mentor because I want to take any chance I get to help others cope with life with PH. I had so many people in my life who supported me when I got diagnosed. I want to instill a “can-do” attitude in new patients — especially young patients.

Why should someone contact a PH Email Mentor?

Connecting with a PH Email Mentor offers patients the opportunity to talk to someone who’s been in their shoes before, and who has already fought part of the battle. It allows patients to have someone who is not only supporting you, but who is also able to say, “Why don’t you try this?” because they may have dealt with a similar issue. It allows patients not to need to reinvent the wheel.

This article originally appeared in the Fall 2012 issue of Pathlight.

Disclaimer: PHA PHriends are available to provide hope and support to PH patients and caregivers. They are not intended to provide medical advice on individual matters, which should be obtained directly from a physician.

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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.