Caregiver Mentor Spotlight

Laura O'Donnell

Laura O'Donnell

PH Email Mentors are patients and caregivers from all over the world, standing by to help patients, caregivers and parents through one-on-one, email-based support. Laura O'Donnell is one of those mentors, and she shares a little about herself now.

How long has your family been living with PH?

I have been a PH caregiver for 10 years. My daughter Shannon was diagnosed with PH as a kindergartner, in 2001. Somewhere along the way my husband and I got involved with a support group. Now we run one for other families of children with PH in the Boston area.

Why should someone email a PH Email Mentor?

Email me if you are looking for hope. My family's experiences can make people who are new to all of this start to feel a little better. This is how I show patients and caregivers the love when I talk to them. We point to our daughter and say, "This is how it could be." My marriage is stronger than it was when our daughter got sick. We used to have fun all the time. Now I'm tired more often, but we've found ways to improve our marriage. We have date nights.

When you feel more comfortable with the day-to-day of life with PH, things will get better. We let Shannon be independent. We let her have sleepovers, and we let her go to the mall. Now I know the difference between not having confidence and having the confidence it takes to live your life. You can't give up just because you've heard the words pulmonary hypertension, and PHA Mentors can help you figure that out.

What are some of the most common questions you hear from PH patients and caregivers?

Oh, I hear all sorts of questions. They want to know why this is happening to them. They want to know if they can travel. A lot of families want to know whether PH kids can swim. In response to all these questions, I tell them about my family's experiences. To the parents, I say, my daughter's different from your son or daughter. If you're a patient, I can't tell you what's going to happen to you. But I can tell you what I do, what my husband does, what my daughter does to deal with the meds, the doctors, all of it.

What advice do you have for other families living with this disease?

Your quality of life is important. Keep up with your relationships. Keep busy. Go do things. You can't be afraid to live. Go for a walk; go to the mall; do something. I was paranoid for a little while, and I kept Shannon in a bubble. But eventually we learned what she could do and what she couldn't do on her own. Eventually, I had to find small ways to let go. That has kept me sane. I go out with my friends and have coffee. I work two nights a week at Build-a-Bear. Everyone needs some degree of independence, financial or otherwise. You can't do laundry and clean every single day. Whether you're a patient or a caregiver, don't let PH take over your life completely. Go find something of your own that you enjoy.

Read Laura O'Donnell's Profile (Sign in required)

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.