Caregiver Mentor Spotlight
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. Jim Wilson is one of those mentors, and he shares a little about himself now.
How long has your family been living with PH?
Our involvement with PH started when my wife Debbie was diagnosed in late 1997. Like many who have received this diagnosis, we didn’t know anything about PH. Debbie had taken Fen-Phen diet pills in 1995 but discontinued them when she started feeling run down. She was misdiagnosed for several years until a cardiologist gave us the definitive diagnosis of primary pulmonary hypertension in November 1997. We both remember the physician telling us, “I can’t treat what you have, but what I can tell you is survivability is less than 18 months.” We were referred to a pulmonology group in December 1997. They ran some additional tests and told us to come back after the holidays. We went back with high hopes that they would have answers. This pulmonology group told us that they didn’t know enough about PH to treat her and referred us to a hospital that did lung transplants. The transplant team started my wife on a program designed for PH to see if she could qualify for a transplant.
The transplant physician had done a fellowship with Dr. David Badesch, and he told us that Debbie might be able to take this relatively new drug called Flolan® that was considered a bridge to transplant. Flolan® stabilized Debbie and she’s still around today. In the meantime, we started learning everything we could about PH. We have now been fighting this battle for 14 years, and Debbie has recently transitioned to Veletri®.
My 26-year career as a hospital administrator in the Air Force helped us immensely in navigating the maze of hospitals, insurance issues and physician-speak that can overwhelm anyone diagnosed with a chronic, incurable disease. The other great resource that has helped us is PHA. Our first PHA International PH Conference was in 1998 in Grapevine, Texas. This past Conference in Orlando was our seventh. We always learn something new and come away with a renewed sense of hope that a cure is within reach.
At the first Conference we attended, I went to the scientific sessions and the sessions for male caregivers to help me understand this disease and my role as a caregiver. I got involved in fundraising by organizing several golf tournaments in the Dallas area and eventually drafted the first guidelines for PHA fundraising events. I served a term on PHA’s Board of Trustees and am currently a member of PHA’s Investment Committee.
As my wife and I grew with this disease, our focus changed from the types of Conference sessions we attended to the sessions we led or co-chaired. I was fortunate to co-chair the male caregiver session at the 2006 Houston Conference and the experience only furthered my desire to help others cope with the difficulties of living with this disease. I’ve also had the pleasure of being on panels that discussed traveling with PH, talking with your physician and fundraising.
What advice do you have for other caregivers?
Communicate. Never forget, there are good days and bad days. Be flexible in how you treat each new day. You have to be sensitive to how the patient approaches the disease. Are they going to be upset and angry, or are they going to say, “I’m going to do what I want to do”? My wife stays as active as her health will let her. As her caregiver, I know when she has done too much and I will encourage her to slow down.
Take care of yourself. You both have the disease. There’s stress 24 hours a day in this caregiver role, so you have to have time to de-stress — and not just when you’re sleeping. It’s important to have “me time.” It makes it much more enjoyable if the patient insists on it, too, and they see the value in it for you.
What does being a PH Email Mentor mean to you?
I have to fight this disease. Mentoring is another way I can say, “I am fighting this thing.” I became a mentor because I want to help people who are going through what I’ve gone through. I want people to start living with a sense of hope, not a sense of dread. My goal is to help caregivers who may be feeling forlorn and overwhelmed to develop a sense of hope.
Disclaimer: PH Email Mentors 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.