Page 35 - CF Roundtable - Winter/Spring 2026

What can you do now that you could not do on modulators?
When Tikafta came out, I was able to start before it was approved
because the government granted me permission since I was on a
lung transplant list. My journey with Trikafta was amazing. I felt like
the life I was waiting for had finally arrived. The medication was a
total game changer for me. Right after I started the medication, I
put myself to the test. I celebrated with my family and went dancing
with my cousins the following night. I am able to enjoy nights out
watching my friend sing in her wedding band and also dance with
them. I can sing my favorite songs in the car, especially my favorite
singer Celine Dion’s songs, and hold such high notes while singing
her songs in the car. The joy is watching everyone in other cars look
at me.
Do you still do CF treatments? What about airway clearance?
What happens if you get a cold? What do you do now that
you’re on Trikafta?
I wish I didn’t have to do any respiratory treatments, but,
unfortunately, I am in the category of advanced lung disease, so
I’m not totally off of treatments or airway clearance. I still do the
vest for a half hour in the morning, usually accompanied with a cup
of coffee or a cup of tea. When I’m not sick and feel back to my
baseline, I do very few aerosol treatments. I can stick to the inhalers
and one machine treatment. If a virus or a simple cold finds its way
into my lungs (as they do) then I’m back to 45 minutes to an hour of
treatments each day until I am feeling better. I have noticed a huge
change with my oxygen saturation levels being in a steady range of
98% to 100% and I’ve also noticed less clubbing in the fingers since
being on Trikafta. Every so often I see the clubbing when fighting an
exacerbation. When the clubbing returns I call my fingers monster
fingers.
Being on Trikafta has helped me get over the hurdles of not being
on long courses of intravenous antibiotics, so instead of a 28-day
intravenous antibiotic course it lasts a week to 10 days, depending
on the severity of the cold or germ I caught.
When you travel, do you still need supplemental oxygen?
What about with air travel?
Being able to travel without oxygen has been the greatest
accomplishment since I have been on Trikafta. For my 40th birthday,
I went to Paris and saw P!nk in concert. This year I climbed Mount
Washington in New Hampshire, which has an elevation of 6,288
feet, in New Hampshire. I’ve traveled to Connecticut, Delaware, and
Ocean City, Maryland. We are currently planning a trip to Vegas, a
trip to Italy, and a trip to Maine. Before being on Trikafta I didn’t
enjoy traveling because of all the extra respiratory treatments I
needed to bring and being fearful of forgetting something. Where
I am right now in my life, if I forget to get something, it’s really not
a big deal because I feel I can skip a treatment here and there and
not worry. I realize now that I can relax and enjoy my life rather than
worry all the time. In Connecticut, I have been to the Pez Factory
and Mystic Seaport in Mystic Connecticut. I’ve visited several
casinos in Delaware, Massachusetts, and in upstate NY around
the Lake George area. Mike and my family both enjoy gambling—I
guess it’s an Italian thing. Our grandparents both loved it. His
grandmother won the state lottery of Connecticut on the same day
as my birthday. Every September, we go to a festival called the The
Big E in Massachusetts.
Every summer we go upstate to Alpine Lake with Mike’s family
and ours and I am able to walk, jog around the lake, and ride the
bike trails. This past October, I was able to practice soccer with my
nephew and run the whole length of the soccer field for a good half
hour straight. Trikafta has been the greatest gift that has been given
to me and it has tremendously changed my life, allowing me to do
all these things.
Tell us about your cancer scare with your appendix.
In October of 2023, right after I turned 40 and went on my trip
to Paris, I was diagnosed with Stage IV Goblet cell carcinoid
appendiceal cancer. Having a family member come to your bed side
with tears in their eyes, telling you that you have cancer is a horrible
experience. For me, that family member was my sister. She has a
medical degree and was therefore in charge of corresponding with
the doctors and surgeons. She has not only saved my life once, but
multiple times. I was having stomach issues for quite some time
and feeling bloated all the time. I felt full very quickly after I ate,
which drastically reduced my appetite. My stomach was so bloated
that I thought I was having another bowel obstruction. I contacted
the doctor and an x-ray seemed to indicate it was just some stool. I
developed an addiction to exercising at the time because my mom
thought I was gaining unnecessary weight and my clothes were not
fitting right—I always looked pregnant. I often experienced a burning
sensation like I had eaten something spicy and I found myself in
the bathroom frequently. One night I finally realized the pain would
not be so low if it were gas or stool. The next day I advocated
for myself and called my CF doctor and requested a referral to a
gastroenterologist. I called and they gave me the new patient run
around that they couldn’t fit me in and his next appointment wasn’t
until February 2024. They informed me that my doctor needed to
write them an email stating why the appointment was so critical.
When I finally saw the gastroenterologist, he sent me for a CT
scan. The results came relatively quickly; I knew it wasn’t going to
be good news. I remember reading the report and telling Michael
that what I was reading didn’t look good—very large tumors, but
not necessarily cancerous. I got a hold of my sister right away
and she spoke to my gynecologist, since I was scheduled for an
emergency hysterectomy. During the procedure they found that the
cancer had originally started in my appendix so they had another
surgeon remove my appendix while I was under anesthesia for the
 In The Spotlight continued on page 36
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