(248) 520-2329
Select Page

We Are
The Extended
CF Familia

Nasal Polyps and Sinus Surgery

by Marieliz L.

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

I always struggled to breathe through my nose as a kid and it’s a struggle that’s followed me into adulthood due to my cystic fibrosis (CF). Constant sniffles and just feeling as every day you had a cold that would never go away.

I would always have to blow my nose and sometimes it would be extremely overwhelming, I was this “mocosa” (booger girl) and it became a part of my identity growing up. Everyone knew I had sniffles and loads of boogers, but it just became synonymous with who I was. I had to always carry tissues with me because I knew I would need them.

Losing the ability to smell

As I grew, the problems began to get worse and by the time I was in my teens, I was unable to breathe through my nose and my ability to smell was nonexistent. I
guess since I was always having sinus issues, I got used to it and its progression in my life. I became a mouth breather, and it was my normal. Moments, where I would try to breathe from my nose, were always met with difficulty and struggle, so I adapted, and my nose became more ornamental than useful.

I would get migraines that would cause sensitivity and my face would become tender around my nose. I remember one day I was in the bathroom blowing my nose and I tried breathing from my nose and tried to look inside and saw this massive mass just covering my nose. It was terrifying because you think the worst! I told my parents, and my dad grabbed his flashlight and looked, and he was stunned and so was my mother.

“Just allergies”

We had gone to the doctors various times growing up, but they would always say the same thing: “she has allergies, she has asthma” and give me antibiotics.
I stayed like this into my adulthood and because no doctor I ever saw acknowledged that it was anything more than allergies, I lived this way into my early twenties. It wasn’t until I got married that I started looking into whether or not I had cystic fibrosis because, at this time, I was tired of always being sick and getting nowhere.

Finding answers

I finally found a primary doctor who helped me find answers. He examined my sinuses and immediately referred me to an ENT specialist. The ENT doctor was amazing, he was surprised that it took so long to get help but when your whole life you go to doctors and they just do the minimal because it’s easier than actually helping someone, you struggle your entire life with something that’s treatable. The ENT doctor came back with the results of my tests and told me that I needed a complete nasal reconstruction.

My polyps had grown so much that they completely obstructed both sinuses and altered the cavity itself and obviously impaired my ability to breathe and smell on top of the other issues such as migraines and pains I would get in my face. Once the surgery was scheduled, I was nervous, but I wasn’t scared because I was just so hopeful about the outcome. The possibility of being able to smell and use my nose again to breathe was exciting and filled me with happiness. Inside I was beaming and everyone around me was scared. The doctor was scared because I was his first CF patient and at the time my health was not fantastic due to many years of being wrongfully diagnosed and mistreated, so my lungs were fragile and the possibility of something going south was a prominent topic prior to surgery.

Getting surgery as a CF patient

I remember the nerves of everyone around me and the fact that the surgery became high risk meant that at the surgery there were 8 physicians in the room, with each having their role. This made me nervous because I felt it was unnecessary and a bit over the top because it was a polyp removal and complete nasal reconstruction but to the medical team it was much more than that and they tried to cover their worried faces, but I drifted off to sleep from sedation feeling scared because I remember the look in the doctors’ eyes and that made me worry.

When I woke up, I was in pain, groggy, and thinking to myself that I made it out alright. Much to my surprise once my husband was allowed to see me, it wasn’t that simple and there were complications with my breathing and bleeding but overall, the surgery was a success and for that I was grateful. I am truly thankful to every doctor and staff member that made sure I was alright and thankful they took the precautions they needed to in case of any medical emergency, due to their diligence and foresight, disaster was averted, and I got to go home with my loving husband. Much to my surprise, I had no bruising and minor swelling, I was surprised to see my reflection and noticed the face staring back at me. It was new and I didn’t recognize myself, I was staring at a woman with no facial swelling where the polyps once called home. My nose seemed smaller, and the entire area was just “new” because I spent a good portion of my life having polyps dominate my nasal area that not having them there was a bit strange.

Breathing and smelling again

Overall, the recovery process was smooth and easier than I thought, realistically recovering from surgery was so smooth. The hard part was learning to use my new nose and actually using it to breathe for the first time in years.

I thank the doctors who took their time to help me learn again because I would automatically just use my mouth to breathe because I was so used to it. I know it sounds silly, but it was tough and something I still struggle with today, but I use my nose a lot more. I can smell my husband and while it sounds a bit silly, it was something I’m thankful for.

I could smell flowers and even cook dinner, just smelling anything and everything. I cried with joy at those simple things because they mean so much when you get to have those senses operating again. I have to do sinus rinses daily and nasal sprays, but it’s worth the upkeep when you think about it. I am eternally grateful to the medical staff and doctors who helped me get to this point and helped ensure that the surgery was successful.

I thank my family for helping me and supporting me through every step of the way. My nose is working great and free of nasal polyps and any obstructions. I am breathing and smelling, and I love every moment of it!

Latino Influencer

Medical View

CF Care as Part of Motherhood

Read the story here


Resource Links

Support Group for the Spanish-Speaking CF Community: Second Wednesday of Every Month

Led by Marilyn Calderon, LICSW
The group meets on the second Wednesday of every month from 5:00 to 6:00 pm PT (8:00 to 9:00 pm ET), and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group meetings are held in Spanish and facilitated by Marilyn Calderon, LICSW.

To register, click here. Please allow 3-4 hours before the meeting to register.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors.

Social Shareables

Spread the word on CF Familia and raise awareness for Latinos living with CF by downloading these social visuals and sharing them on your social media channels.