We had the distinct pleasure of hosting Lara at our office when she visited Boston on December 10th, 2018. An instant friendship developed when we initially met her at a boxing event, Knockout CF, hosted by the CF Lifestyle Foundation.
Lara grew up near Albany, New York, with her parents, two brothers and two sisters, but has spent the last five years of her life calling a town just north of Burlington, Vermont home. She went to college at Saint Bonaventure where she pursued a Bachelor of Arts in Philosophy, concentrations in Non-Violence and Business Administration. She ended up pursuing a Master’s Degree in Mental Health & School Counseling there as well. She has since committed her time to further expanding the scope of her major which includes engaging with the CF community through her blog.
While visiting, we had a candid chat where she opened up about her CF journey and her double lung transplant. It occurred in August of 2017 and only required 13 days of hospital time before being sent home. Unfortunately, she returned to the hospital after five days of being home for another 16 days due to kidney damage. Her anti-rejection meds were too strong which resulted in them cutting her doses in half. She said one of the craziest, unexpected things that happened after the surgery was that she couldn’t feel her chest for 9 months. It felt completely numb to the touch as well as feeling like there was empty space inside of her. She said most of the feeling is back now in that area, but she does get a tightness in her chest occasionally due to barometric pressure. Apparently, there is extra sensitivity for those who have had lung transplants and different pressure affects the comfort level of the patient.
Her voice turned serious as she reflected on how lucky she is to have the support team that she did; whether it was her family, friends or medical professionals. She said, remorsefully, how she does sometimes forget what her life was like before her transplant. “Sometimes it hits me though, the things that I couldn’t do.” Her appreciation for her life was clear as she continued to discuss how she contributes a lot of her success to the mental battle. “The battle is in the mind. If my mind game is strong, then I’m great.” Her mental health background played a huge role in understanding the power of positivity, channeling her “inner child” for the surgery, and how far all of it truly impacts her everyday life.
Lara feels that people with CF are not treated fairly in public settings. “It makes people feel dirty.” She was referring to those with CF and the regulations that have been somehow decided that only one person with CF is allowed in a confined area if any. “You’re not treating them as the full person.” She strongly advocated for the right for people with CF to be around others if they wanted because that is their community. It is not right to separate them when all of these events and fundraising efforts are for them. She used an instance of when her friend with CF was in the hospital and she stayed by her bedside against the medical professional’s orders. While she understands that those with CF are more susceptible to getting sick, they are also more responsible about keeping a clean environment that is germ free for anyone that has their disease.
Her passion about her studies seeped through every conversation that we had including one about the mental health of people with CF and their loved ones. In the clinic, she has observed medical professionals who say something along the lines of “I see you marked that you’ve been feeling anxious or depressed, but you’re good right?” She finds that this approach is extremely ineffective and unhealthy for people with CF. That is why she’s planning to open a non-profit for mental health services that aren’t just for people with CF, but anyone. Her end goal is to provide a place where there are better coping skills to provide the glimmer of hope in any dark situation.
We concluded her visit with hugs and sending her off with a swag bag of PTI goodies. Thank you for visiting, Lara! Come back soon!
Read her blog: https://www.laragovendo.com/