What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.
My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.
I thought I would share my surgery history. Surgeries come with the CF territory. Some people start life with a surgery and others don’t have any for a long time, depends on the person.
I have had multiple sinus surgeries, I have lost count. My first sinus surgery was when I was 10 and my last was when I was 21. I did have one a year for awhile. During the sinus surgeries they clean out all the infection and polyps (basically a growth in the sinus) that have formed. They also have had to drill holes in the sinuses to help them to drain. Your sinuses are just holes in your head. They are not like lungs that are a sack. Sinus surgery is painful but pays off in the long run. When you have lots of thick bacteria infested mucus in your sinuses it can infect your lungs. The lungs and sinuses like to share with each other therefore it is best to get the sinuses checked out. Some children have been referred and later diagnosed with CF after being seen by an Ear, Nose and Throat doctor due to having polyps in their sinuses. Polyps are very common in people with CF. Sinus irrigation is common practice for people with CF. It is good to rinse as much out as possible and hope that you don’t have to have surgery.