Some of you know that my daughter, Lise Courtney, has cystic fibrosis. I have been thankful since she was diagnosed at the age of two for the incredible care she has received at Johns Hopkins from Dr. Beryl Rosensteen, Dr. Pamela Zeitlan, Dr. Peter Mogayzel, and now, Dr. McDonald. Since she is almost 24, I don't know Dr. McDonald like I knew her doctors as she grew up, but I know that she thinks the world of Dr. McDonald and is grateful for the care and support that she gets from all the doctors and staff there.
In January, Lise Courtney was not feeling well. Following her check up, Hopkins called to say that she had cultured a very nasty bacteria in her lungs and would have to be hospitalized for nearly a week to receive a round of intense IV antibiotics. After she was released, she would still have to continue the IV antibiotics through a pic line for another two weeks.
This was a huge shock to me. I had convinced myself that she was always going to be healthy- after all we had avoided hospitalizations for all these years and I just assumed it would keep going.
If it was a shock for me - it was even harder on Lise Courtney. After all - she was the one going into the hospital. And even though we were there for her, it is really hard to put myself in her position.
Because of the danger of cross infection from one CF person to another, CF people are strongly discouraged from "hanging out" together. Lung infections and bacterias that are annoying to you and me can be fatal to someone with CF. That means that someone with CF does not really have a close friend or confidant who also has CF and knows exactly what that person is going through. Even though Lise Courtney's cousin also has CF, they do not spend time together. Her cousin is very close with the other cousins in the family, but Lise Courtney can't spend time with them when her CF cousin is there. It is really hard to have CF, and it is lonely on top of it.
To combat this the Cystic Fibrosis Foundation recently started Peer Connect, a peer/mentoring group to match people with CF so they will have a friend, a peer, or a mentor to talk to and share experiences. Lise Courtney was one of the first round to be matched, right as she came out of the hospital. The young woman with whom she was matched is perfect! She is a young woman who is several years older than Lise Courtney. Stacy is recently married and lives in California. She went away to college and has travelled extensively. She works and is active and she is now probably my daughter's best friend. Lise Courtney went to California this fall to participate in an extreme hike with Stacy at Mammoth Lake. Separated by 5 feet or more of fresh mountain air, they were able to be in each other's presence for the first time!
The CF Foundation Peer Connect program has meant the world to my daughter. This is a post that she wrote for the CF Foundation blog - and it was published today -
Finally Finding Someone Who Gets It
by Lise Courtney d'Amico
Going from being pretty healthy for most of my life to being admitted to the hospital was scary and shocking. I decided to get help by asking for a peer mentor -- someone who also has cystic fibrosis. What I didn't expect was that I'd get amazing support and advice about CF and so much more.
I was completely terrified. In search of support, I turned to my friends and family. They were sympathetic and said everything they could to show their love, but (through no fault of their own) they could never fully understand what I was going through. I think that most CFers would agree that due to cross-contamination risks, cystic fibrosis can be an isolating disease. I felt completely alone and very scared.
I had no friends with CF that I could confide in, and I was not sure how to go about meeting other individuals with CF.
Somewhat magically as I was being discharged from the hospital, I received an email from the Cystic Fibrosis Foundation about CF Peer Connect, a new mentoring program where people with CF can virtually connect one-on-one. I filled out the online form and received a phone call to talk about what I wanted in a peer mentor. I explained that I was looking for a female in her 30s who had a similar health status to my own. In addition, I wanted someone who was employed so that we could speak about CF and career decisions, a topic in which I was particularly interested. About a week and a half later, I was matched with my mentor, Stacy!
During our first phone call, it was instantly apparent that Stacy and I were well-matched. We exchanged stories about our CF history and then moved on to telling each other about our careers, families, and hobbies. It was amazing how much we had in common. Our medical history was remarkably similar, and we both seemed to share the same outlook on life. At the end of the phone call, we scheduled another chat for the following week. I remember hanging up the phone and thinking “wow, this is the connection I have been missing!”
Over the course of the next few months, my relationship with Stacy became stronger -- beyond what I had initially expected from a peer mentor. What began as scheduled weekly phone calls turned into daily texts or calls. My bond with Stacy is not over how CF has negatively impacted our lives. In fact, we do not let that attitude enter our conversations. Instead, we have connected over our positive outlook on life and our shared drive to achieve. We have particularly bonded over our passion for fitness and the benefits it has for our health. Although we live across the country from each other, we joined the same gym in our individual states and we work out “together.” We are even in the process of training for a half marathon! Knowing that Stacy is heading to the gym and completing all of her treatments keeps me motivated to stay on top of my health and fitness.
The most incredible part of my experience with CF Peer Connect has been the transformation of my relationship with Stacy. When we first began speaking, I needed Stacy's advice and guidance on how to get through my illness more than anything. Stacy was able to give me strength during an extremely tough part of my life because she understood what I was facing more than anyone else. She could offer me advice from the standpoint of someone who had truly been in my shoes.
Now our relationship has grown into one of two friends mentoring each other, rather than one of a traditional mentor/mentee. Today I offer Stacy as much support and guidance as she offers me. I am incredibly thankful for every conversation that we share. I have gained the gift of a mentor, a friend, and a teammate, because Stacy and I are committed to winning the fight against CF together.