1. Do you have a primary diagnosis, if so, what is it?
A: I do, I have cystic fibrosis
2. How long did it take you to get diagnosed?
A: I was diagnosed at birth. I had to have a meconium ileus surgery and from that they knew I had cystic fibrosis.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I was a newborn so I don’t know how I felt. However, my parents were very nervous and probably numb about it all. Of course they pushed for anything and everything to get me as healthy as possible.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: I would say stay positive and optimistic. Even though I have a diagnosis, I had to go through a double lung transplant which the outcomes are never known. So I can relate on that level that my disease and life is unknown and my tool is to always find the positives and keep up the faith. One of my favorite quotes are “Let your faith be bigger than your fear.”
5. Has your chronic illness changed your perspective, and if so, how?
A: It definitely has shaped me into the person I am today. Had I never had cf I would most likely take every breath for granted and just everything I have. I feel like cf is a blessing in disguise because it’s part of me and has influenced how I go about my life, both in positives and negatives.
6. What moment are you most proud of in your chronic illness journey thus far?
A: Getting through transplant and the pneumothorax surgery a few months afterwards. Also, never giving up on my goals while being listed. I was listed for 2 years and 8 months before receiving new lungs. While waiting, I graduated from college while being on oxygen and with a lung function in the low 20’s and did some fun activities. I made sure never to give up on myself and realize my lungs would come at the perfect time.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: The lowest was right before transplant when I was super sick and I didn’t know if I was going to make it. I was having major anxiety and really couldn’t think straight because I was scared I was going to stop breathing at any minute. I couldn’t walk but 5 ft and would cough to the point I puked. I couldn’t breathe and was needing 6L of oxygen 24/7 and IV antibiotics every 3 weeks. Thankfully 6 days later I got the call for new lungs and my life changed for the better.
8. What or who has helped you the most during the lowest days?
A: My boyfriend, Lea, and my parents & kitty. My boyfriend Jeff has been my rock and has done everything for me to make sure I am in great spirits. He makes sure I can laugh and everything else doesn’t matter, its just him and I. Lea helps me by understanding to a T what im going through. She has CF and knows the struggle I am going through and can help me through relating. My parents are just my support. I love them so much and they hold my hand through all the rough times and get me through them. My mom is a rockstar and stayed with me every night when I was in the hospital after transplant. My cat always knows when I need cuddles and her to just sit with me to make me feel better.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: If someone has CF and they are on the transplant list, I want them to know to never give up. Don’t ever give up on yourself and push through with a bunch of optimism. Surround yourself with only positive influences in your life. It gets better and that call will come.
10. What would you like the world to know about life as a chronic illness patient?
A: That every illness is not visible. Life with an invisible illness is tough because people do not understand that you can look great on the outside but our insides tell a different story. Having CF is difficult and has its hardships, but it has been a positive because I am able to connect with other chronics through the Chronic Love Club. Our lives may be surrounded by medications, doctor visits, hospital stays, but we are badass warriors and make the most of what we have.