CF 101: Sinus Disease in Cystic Fibrosis

This is a continuation of my “CF 101” series. The purpose of the “CF 101” series is to educate people about Cystic Fibrosis using every day language and personal experience. Please click the links for my previous posts in this series:

CF 101: CF Diagnosis

CF 101: Lung Disease in Cystic Fibrosis

CF 101: GI Disease in Cystic Fibrosis

Cystic Fibrosis (CF) not only affects the lungs and digestive system, but also other areas of the body. In this post, we will focus on the Sinuses. Please note that in this post, I am coming from my personal point of view and sharing my experiences. Please remember that while they may share many common symptoms and characteristics, no two CF patients are the same.

Sinus Disease

Part of the respiratory system, the Sinuses exist primarily to humidify the air we breathe, and to filter out irritants such as bacteria, viruses, allergens, dust and dirt. The sinuses contain four chambers, and are lined with Mucosal tissue. The thin layer of mucus traps microscopic particles, and use the hairs on the inside (cilia) to either move it forward so we can sneeze it out, or carry it to the back of the throat to be swallowed or coughed out.

In CF patients, however, the mucus is often too thick and sticky, and cling to the walls of the inside of the sinus passages. This provides a moist, warm environments for specific germs to settle and multiply. Sinus infections can become quite severe in CF patients, who often need (repeat) surgery to reconstruct the sinus framework for easier clearance of mucus (which often includes opening the several chambers into larger ones, and fixing a deviated septum), and removing polyps, infected tissue, and excess mucus.

Symptoms of Sinus Disease

  • Increased amount and thickness of mucus
  • Culturing chronic bacterial infections
  • Sinus drainage down the back of the throat
  • Sore throat
  • Non-productive cough, often at night
  • Inflammation
  • Benign Polyps
  • Swollen areas on the face that are painful to the touch
  • Pain in and around the nose, and near and around the eyes
  • Headaches
  • Sensitivities to noise and light
  • Loss of smell

The Structure of the Sinuses

Since there are no doors between the nose and the lungs, the same strains of bacteria that colonize in the lungs in CF patients often colonize in the sinuses. In 2009, I was getting sick so frequently that my CF doctors referred me to an ENT (Ear, Nose, Throat) specialist, who discovered that in addition to blocked, inflamed, narrow sinus passages, I had polyps and a deviated septum.

Prior to surgery, we had already tried every possible treatment:

  • Antihistamines (Benadryl)
  • Saline rinses (salt + warm Distilled Water)
  • Nasal steroids
  • Decongestants (like Afrin nasal spray)
  • Topical antibiotics – compounded IV antibiotics into a form to rinse sinuses with the mixture

When those failed to work, and my symptoms grew worse, my doctor finally scheduled surgery – which couldn’t come fast enough, because I was having such severe headaches that I had to keep all light and sound to a minimum.

The Big Day

Surgery lasted most of the afternoon.

  • Opened the separate chambers on each side of the nose into one large chamber on each side
  • Straightened my severely deviated septum
  • Took out polyps
  • Removed copious amounts of mucus (he told my husband “it was in the top 5%” of the worst I’ve ever seen!”)
  • Removed areas of severely infected mucus
  • Opened up tight and inflamed passageways
After my first sinus surgery/

After my first sinus surgery.

I remember the first big breath I took after waking up in the recovery room. I inhaled through my nose and felt air moving in the top of my nose – something that I had never consciously felt before. (My surgeon didn’t use packing, only biodegradable splints.) It was surreal.

Recovery

I went home right after surgery. Recovery was uncomfortable, but it was manageable.

Inside my nose:

  • My doctor didn’t use packing.
  • Biodegradable stitches
  • Biodegradable splints
  • “Crusts” of blood and mucus that the doctor had to remove with his tools. This was both gross and oddly interesting. After the first few months, I still get huge crusts in my sinuses, but I have to use saline rinses and lots of “blowing out/sniffing” to loosen and get them to come out the front or go to the back of my throat where I can cough them out. It’s gross, but I feel such relief when I get rid of one.

Outside my nose:

  • I had to wear a bandage under my nose for about a week.
  • Days 1-3, I had active bleeding “out” my nose. It was like a slow faucet.
  • Days 4-7, I only bleed in occasional drips, usually if I bent/leaned over too much or inhaled too deeply through my nose.
  • My face hurt to touch for a couple of months after surgery
  • I was sensitive to light and sound for a few months after surgery
  • I had severe headaches for about six months after surgery

Restrictions:

  • Days 1-3, I had to sit (and sleep) sitting up, at a 90-degree angle.
  • Days 4-7, I was able to lean my body to either side on a pile of pillows about the height of my shoulder.
  • Weeks 2-4, I had to sleep at at an angle on my side, but could sleep in bed.
  • After week 4, I could lay on my back or sleep on my side with just one pillow.

I continued to do saline rinses in my sinuses to help keep them clear and hydrated! I use NeilMed Sinus Rinse with distilled water. It may be more comfortable to warm it up in the microwave first. The package provides the salt packets to add to heated distilled water*.

*Never use tap water for sinus rinses, as micro-organisms can infect and reach the brain!

The junk that comes out is often gross, sticky, and looked too big to have come out of my sinuses, but it’s worth it to be able to breathe. Thanks to the new opened chambers, the junk has a place to go.

2013

Last year, I needed a second sinus surgery, due to a return of polyps and narrowing sinus pathways due to inflammation and infection.

After my second sinus surgery.

After my second sinus surgery.

Some people have multiple (even many) repeat surgeries to clear infected tissue and newly formed polyps – often called “scraping, but these patients sometimes also require removal of diseased tissue or structural obstructions.

Despite all of the work done on my sinuses, I continue to experience infections, mucus buildup, and “sinus headaches”. I take several medications daily to help keep things going, and see my ENT a few times a year to keep things going well.

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On another note, some people may wonder why I let myself be photographed when I’m sick. I share these images not out of conceit, nor for shock value, but to share with people the raw reality of living with Cystic Fibrosis. It’s an ugly disease, and there are many moments when my body does unpleasant things.

I can’t tell you how many times people – even doctors – have said that looking at me, they couldn’t tell I was sick. My outside sometimes doesn’t match what was going on in my insides, and whatever did show on the outside, I often covered. But now, I feel it’s my responsibility to show what CF is like behind the curtain.

While they may share many common symptoms and characteristics, no two CF patients are the same. Please do not make any changes to your treatment regimen without consulting your CF team or physician(s). All of the information presented on this website is from my personal perspective and should not be taken as medical advice, nor as any official statement on Cystic Fibrosis, by the CF Foundation, my doctors or hospital(s).

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