GERD is one of the long-term, late stage-ish issues of cystic fibrosis. Gastroesophageal reflux disease (GERD) is so common with CFers because they eat so much, which stretches the stomach and churns up the stomach acid and because years of coughing loosens the sphincter at the bottom of the esophagus, which allows said acid to exit the stomach.
At my last clinic visit, Dr. Haddad explained that he wants to get an accurate reading of this disease because I am presenting mostly inflammation issues in my lungs now, which may suggest that it’s because I’m aspirating stomach acid into my airways. I’ve been taking Prilosec since the end of my major weight gain in 2010 when I was taking 3-4 Zantac 150s to keep up with my heartburn. I take it once per day in the morning now, but in talking with most of my other CF friends my age, if they haven’t had corrective surgery, they take it twice a day.
I mentioned surgery there, didn’t I? They correct GERD permanently with a procedure called Nissen fundoplication. They wrap the top part of the stomach around the bottom of the esophagus to reinforce the closing function of the sphincter. When GERD is a big enough of an issue in CFers who are still pre-transplant, they do a “fundo” and found that it can actually postpone transplant by eliminating the acid in the lungs. The primary purpose surrounding doing a fundo for transplant, though, is to keep the new lungs pristine, so I’m pretty much going to have this one way or another at some time or another since my heartburn is so bad.
To test for GERD, they do an esophageal manometry in the lab and esophageal pH monitoring for 24 hours at home on the person’s normal diet and routine. The first exam studies the pressure of the esophagus when swallowing via an NG tube. This is a good indicator of the basic function of the sphincter and takes about an hour.
To test the pH, they place an NG tube just above the stomach and measure my pH levels until the next morning and track what I’m doing and eating via a diary to see what causes what pH readings. I do not tolerate NG tubes well – at all – and really hope that the first test ends it right then and there with a positive, definitive result that my sphincter is shot because
- I’ve been without Prilosec for 5 full days and no Zantac since Tuesday at 3pm – I have a nuclear furnace in my belly and throat.
- Every cough makes it worse.
- I will throw up during this testing.
- I will be on the verge of a freak-out for the next day having a tube down my throat – I did get permission to take Xanax if I need to in order to complete the testing.
So, here it is, 6:30am now. My exam is at 9am and they want me there by 8:30, so we’ll be leaving at 7:40 to enter into my Thursday from some horror flick. Can you tell I don’t like NG tubes yet? I am more freaked out by NG tubes than I am surgery. I’d be a perfectly willing and compliant patient if they just said they’d like to operate without any empirical data.
Both the girls have had the pH test done about 2 years ago just before Lauren transferred over to the adult CF center. The main reason was because Robyn had struggled to put weight on for about 18 months and her chest x-ray from her annual review showed increased scarring from the previous year. She hadn’t had any infections in the year to explain this and with the lead CF consultant at the children’s being a Professor of Gastro he decided to do the test. Robyn was found to have reflux which she takes 20mg of Omeprazole once a day, since starting with this treatment she has piled on the pounds and her height has shot up. The Prof said that the excess acid she was producing was more than likely destroying a large portion of the creon she was taking before it had chance to work and that would explain her not putting on the weight as they would of expected.
Good luck with your 24 hours with the NG tube and I hope you get some good results for the Doctors.
The test really sounds miserable. But it can’t be as bad as the GERD. By the way, CF might not be the only reason for it. I have it and so does your grandma. I guess she gave the genes to me and I passes them right along. Oh. Your mom has it too. So the esophageal deck was stacked against you from the beginning.
I’m glad you didn’t throw up! Yuck..I am not looking forward to ever having this test done. 🙁
I hope it went well!
And I should probably add… I’ve always been secretly glad that, despite having severe GERD for years, no doctor has ever suggested this test to me. 😉