Page 34 - CF Roundtable - Winter/Spring 2026

IN THE SPOTLIGHT
With Roseann Greco (Part I)
Interviewed By: Andrea Eisenman
Roseann Greco
Age: 41 (at the time of the interview)
Resides in: Smithtown, NY
Hobbies: book clubs, reading, book
journaling, traveling, and spending time
with my nieces and nephews
You were listed for a lung transplant at Duke, Columbia,
and at a center in Philadelphia. Tell us what that experience
was like. What were your PFTs at that time? How was your
quality of life?
My journey with being listed for a double lung transplant began with
Columbian Presbyterian in 2011. My FEV1 was ranging between 32
to 37 percent. I remember at that time my lowest was a 24% FEV1.
During that time, I was on 10 liters of oxygen and had a portable
oxygen tank. I looked so frail; I didn’t even recognize the person
staring back at me in the mirror. I would say where did the vibrant,
energetic girl go? I stayed in bed for almost two years. I struggled
with getting dressed, with being on treatments, with eating, and
with being on constant IV antibiotics. I started to lose hope. I
anxiously waited for my call and pictured what my new life would
be like with having healthy lungs. At the same time, I was having a
hard time coming to terms with parting with my own lungs because
they were mine and I was accustomed to living with CF. My dad,
being a mechanic, used to tell me getting a pair of new lungs was
like getting new tires put on a car.
Three calls came from Columbia Presbyterian. Each call felt like
I was getting closer and closer. I remember my first call was on
New Year’s Eve. My parents’ friends and their kids were visiting at
the time. When we got the call, we had to send them home. That
call was a false alarm as they had mistakenly called me instead
of another person. The second call resulted in the lungs being no
good; they weren’t going to hold the oxygen and they would just fail.
On the third call, it was determined that the lungs were too big. They
needed to be small because I am only 4 feet and 10 inches tall and
petite.
Your CF care team is Columbia Presbyterian. Why were you
listed at two other transplant centers?
All the hospitals were telling me the lung size was going to be
a challenge for me. Since I needed lungs from a small child or
someone petite, I was listed at multiple hospitals because I wanted
to keep my options open. Also, I had signed papers at the time to
accept a high-risk donation (examples include: organ donation from
donors with exposure to HIV, donors who are in prison, donors with
history of intravenous drug use, donors with a history of prostitution,
donors with high-risk sexual history, and donors with hemophilia).
What was your view on transplant while waiting for one?
What is it now? Initially, you indicated you would not want
one, why?
Back then, I don’t think I was thinking about anything other than
being able to breathe, coming off IV antibiotics, and being able to
have somewhat of a normal life. When you are that sick, you just
want relief. I also lived with the fear of wondering how long my
lungs would last. As much as I suffered, I knew this was not what
God had planned for me; he had better plans for me written in my
book. As I look back now, I’m happy that the transplant wasn’t an
option for me. I read so many stories about rejection and how the
necessary immunosuppression pills cause cancer in transplant
recipients. I’m glad I didn’t have to worry about rejection and being
up against the clock. I have been through plenty as it is—everything
from bowel obstruction to kidney stones, three times.
Did they test you for your mutations? Did you know that you
were a good candidate for modulators?
Looking back at my pediatrician’s medical records, I was tested as
an infant having two copies of the F508del mutation, which is both
the worst and most common mutation. They offered me a chance
to try the modulators for Orkambi and then for Trikafta. At first,
I was hesitant. I wanted to say no more drugs and no more pills
because I was on every single drug you can think of! I kept thinking,
how is this going to work? Am I just wasting my time?
Can you share your experience with modulators? Were you
in a clinical trial for any of them? Which ones did you try?
Did you feel a difference right away? Were there any side
effects?
I was in several clinical trials for various modulators. I knew right
away that I had the real medication because within three to four
days I felt a great difference. I did my first clinical trial with Orkambi
back in 2015. I remember constantly keeping track of my SpO2
which was a steady 97-98%, and I felt fantastic. I noticed less mucus
production as well. I did notice a change faster with Trikafta than
with Orkambi. I felt a slight difference with the switch from Orkambi
to Trikafta, and I thought, wow! If this is what my life was going to
be like on this medication, I am home free! Then, when I finished
the clinical trial and reflected on my time on the medication, I felt
like I had just lost the greatest thing that ever happened in my life. I
wondered if I would ever get this opportunity again. I am so thankful
for having been given the chance to see what it is like to just simply
breathe. My time on the medication was short and I hoped that I
would get the chance to take Trikafta again.
Talk about being on Trikafta. How did it change your life?
After being on Trikafta, I felt instantly better. I went dancing, I gained
weight, and I can now exercise better and longer.
34 CF Roundtable Winter/Spring 2026