Surgery Roll Call

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.

November of 2012 I had the “fundo” (Nissen Fundoplicatio). I can tell you there was nothing fun about it. The fundo is the “acid reflux fixer upper” surgery. During this surgery they wrap the top of your stomach around the bottom of your esophagus to prevent the acid from refluxing up. Acid reflux is a common thing in CFers from all the digestive issues and the multiple medications. Acid refluxing into the lungs can cause infection and increase frequency of CF exacerbations. My CF doctor was convinced that part of my problem in my frequency of exacerbations and not being able to get over them was acid reflux. I took Prilosec twice a day and didn’t ever feel my acid reflux but according to my testing I had significant acid reflux.

The first step to discovering if surgery is needed for the acid reflux issue is to have an endoscopy. During this they look down your throat to see if there is any erosion from acid. The next step is a Bravo study where they put a little sensor in your throat to test how much acid there is actually refluxing. The Bravo stays in place for 24-48 hours and you have a little remote type thing. On the remote you push buttons when you cough or feel heart burn so that they can see how it correlates to what the sensor shows. You also have to keep notes of when you are laying down and sitting up and what you ate, once again all to show how it ties to what the sensor shows. Another way to test the acid level is with a Ph probe that goes down your nose and stays in place for 24-48 hours. Next few steps are swallow tests where they see how your swallower works and to make sure nothing is aspirating into the lungs.

Now that we found out that my acid reflux level was insanely high it was time to schedule surgery. I put it off for two years because I knew it was going to be a rough road to go down. Finally got it scheduled and it just so happened that they first available surgery time was a few days before Thanksgiving. I went into the hospital a few days before surgery to get started on IV antibiotics to help with recovery. The surgery was done by the robot, obviously my doctor controlled it. I asked him if he was good at that claw game at the arcade and if he would actually be there or at Starbucks on the laptop. He laughed so that’s good.

I woke up from surgery is a lot of pain. Coughing was so painful and moving in general was very painful. I was in tears often from the pain. I had 6 little holes from the surgery but they have to move your muscles around and cut and stitch things in place so it isn’t easy. Unfortunately, I developed a post op ileus which is basically my bowels rebelling and not wanting to work right. I was full of gas and poo. I was not able to eat for a week and a half which was not fun. I looked about 7 months pregnant from all the bloating. It was also very painful. When I did eat I was only able to tolerate a few teaspoons of soup or pudding and I was full. It took months for me to be able to eat somewhat normal again. I lost 20 pounds from start to finish. For someone who loves to eat, it was not fun to not be able to eat what I want and how much I want.

The fundo was by far the hardest surgery I have had. It has been a few weeks shy of a year since the surgery and I still have some issues but nothing like right after surgery. I have more gas issues than before. Also I was not able to burp for a long time and have finally been able to release little burps. Progress!

There are many common surgeries for people with CF and these are only mine.

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