For Lorraine Robbins of Warrington, Pennsylvania, advocacy means speaking up for herself and her health care needs. She shares how she advocated for herself between her 2012 idiopathic pulmonary hypertension (PAH) diagnosis and her 2020 lung transplant. Lorraine, 52, related her story in the fall 2021 issue of Pathlight magazine. Lorraine and her husband Jack have two daughters, Phoebe, 18, and Lorelei, 15, plus two dogs and three cats.
By Lorraine Robbins
In July 2020, I went to the emergency room for fluid overload. I was very sick. I was admitted, placed on high-flow oxygen and spent the next 99 days in the ICU, waiting for new lungs, then recovering from surgery.
I am now free from PAH. Since my diagnosis, the most important thing I did for myself was to find a perfect fit pulmonary hypertension specialist. For me, that is a doctor who listens, cares, asks questions, answers questions, and allows me to be part of the plan.
Over seven years, my doctor and I came to genuinely care for each other. While she was absolutely the expert, I’d like to think that we learned from each other. Make sure you find your perfect fit.
My PH doctor is no longer my doctor now that I no longer have PAH. Her last gift was to help me find my perfect fit transplant doctor, who is now on my journey with me.
Listen to your instincts
Throughout my PAH journey, I advocated for myself by following my gut. There was a point when I tried a newer medication that was supposed to be better for my PAH. But my health progressively went downhill during the 10-plus months I was taking it.
I finally called my doctor and asked to switch back to my tried and true Adcirca. Within three months, my numbers improved, and my echocardiogram showed that my heart was back to PAH normal. I believe in doing whatever is necessary to have your needs met. Be the squeaky wheel.
During the eight years I needed supplemental oxygen, I had to push my supplier to give me what I needed as my breathing capacity worsened. When I was diagnosed, I required four liters per minute, but my needs grew to six, then seven, then eight. I had to provide test results, documentation and explanations about why I needed so many tanks. I refused to take no for an answer: I am a mother of two with a life to live.
When I had unused tanks, I would stash them for our annual week at the beach. Sadly, asking for extra tanks for the trip was always a battle.
Accept your limits
Accepting help is a big part of self-advocacy, and a hard one. But it alleviates stress, allowing me to focus on what I can do. My family receives so much help and support, and our gratitude is never-ending. My husband was diagnosed with late-stage colon cancer a year after my PAH diagnosis. He is now five years cancer-free.
Stay true to who you are
I also advocated for myself by refusing to let PAH change the core of who I am. I count positivity as a medicine.
Those 99 days in the hospital for my transplant taught me so much: I am strong. Kindness matters. Don’t be afraid to ask for what you need (I mostly begged for sleep).
Those caring for me were smart and equally strong. Advocating for myself meant recognizing the human in every person who helped me. In return, I was treated as a person, not just a patient.
I can’t say enough about my amazing transplant team. I am so grateful for the PH community, my care team, donor family and donor.
I continue to self-advocate by listening to my doctors, exercising, complying with medications and tests, and keeping positivity and kindness at the forefront of how I live this new life. I am extremely lucky to live in a part of the world where excellent care is nearby.
Do everything in your power to get what you need. Advocate for you!