Patient Mentor Spotlight
PH Email Mentors are patients and caregivers standing by to help other patients, caregivers and parents through one-on-one, email-based support. Read on to learn about BreAnn McFarland, an email mentor and transplant recipient.
What’s your PH story?
In eighth grade, I started having chest pain and dizziness. My pediatrician referred me to a cardiologist, who diagnosed me with a hole in my heart and scheduled surgery to take place during my summer vacation. Before surgery, I had to have a heart catheterization, and the doctors discovered that I had PH rather than a hole in my heart. I was admitted to the hospital to do the testing I needed in order to be put on the transplant waiting list. Before I had a transplant, however, my doctor wanted to exhaust every other option available.
I made it through my freshman year of high school taking only a blood thinner for treatment. Then I was placed on Flolan®, which was still experimental at that point. Flolan® kept me going through high school, but the side effects were destroying my body. I finally had to accept that it was time for transplant, so on my 18th birthday, I was placed on the waiting list for a bilateral lung transplant.
In October 2002, I had seizures due to a medication interaction, and I ended up in ICU. I was struggling to breathe, and the doctors told my family that I probably wouldn't make it... but I did. I wasn't on oxygen until after the seizures, but all of a sudden, I couldn't turn the tank high enough to get enough oxygen. I felt like I was being held under water with a rock on my chest, slowly suffocating.
On Dec. 7, 2002, I lay in bed, knowing that I was out of time. We all knew that without new lungs, I would not make it through the weekend. That's when the phone rang with the call I had waited five years for: I was about to receive my new lungs. There were some complications because my body was so debilitated, but after a few days I finally began to improve. It was not the ideal place to spend Christmas, but I had no complaints that year ... I had just been given the best Christmas gift ever, the gift of life! A gift that I am still incredibly thankful for 10 years later.
What advice would you give to other PHers considering a transplant?
Join PHA's Transplant Email Group! It's a PH support group with pre- and post-transplant patients and caregivers. Transplant is very scary, and we try to help guide people through it by answering questions and offering support. I'm the type of person who wants to know all the facts so I'm prepared for what's to come, but I didn't have any other transplant patients that I could talk to when I was listed. My imagination only increased my fear. But when you take that first breath with your new lungs, you know it's a new beginning.
What does being a PH Email Mentor mean to you?
As a mentor, I want to bring hope to other people living with this cruel disease. I thought I had been given a death sentence when I was diagnosed, but my doctor gave me hope. No matter how bad things got, he kept that hope alive in me. If you don't have hope for the future, you don't have anything to fight for ... to live for. I know my life was saved for a reason, and maybe that reason was to show others that there is always hope.
How can a PH Email Mentor help?
As PH Email Mentors, we use our experiences and the knowledge we've gained from our PH journeys to guide and support other people living with PH. Being told you have a rare lung disease is one of the scariest things in the world, and everything just falls apart around you as each word sinks in. Then you hear the four little words that echo in your mind, "There is NO cure." When you are hit with something so hard, to be able to talk to someone who has already been through the same thing is a huge comfort. You find hope in knowing that you can live with this disease, and that you can still have dreams and goals for the future. You learn that it's not the end - not by a long shot.
Read BreAnn's Mentor profile (sign-in required)
This article originally appeared in the Winter 2013 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.