Tuesday, July 23, 2013

What Went Wrong

Continuation from my last post...

We both agreed that I did not have a major infection as I did not have any infection symptoms. After listening to my lungs he thought, due to little air movement, that I was just full of mucus. I was a little baffled as nothing had changed. I had been completely compliant with treatments and I had been exercising. The only explanation the doctor could give was that because of a heat wave (it was between 108 and 111) for a week straight that I may have gotten dehydrated and so my mucus got dried out and stuck. This made sense to some extent. I have had lung function drops in the past after extreme bouts of heat, but the drops were usually a percentage or two, not 15%!!

My husband and I decided to take a spontaneous trip to the ocean so that I could breath in the salty ocean air. I always feel better by the ocean and even though we only live a little over an hour away Kaylee had never been to the ocean. While at the hotel, I discovered what may have been the biggest issue with my lungs. I was nebbing and realized that it was taking a really long time. I looked in the cup and realized after 20 minutes it looked as if I never even started treatments, the cup was full. Suddenly, things started to fall in place. The prior week I noticed my neb was a little slow and had replaced the tubing twice in one week. I also noticed I wasn't coughing much during treatments, but thought it was because I was swimming so much that I didn't have a lot of mucus to move out. I realized that my neb (which was only a year old) was dying on me, but I really wish I would have discovered it sooner. I think the combination of the heat, dehydration, and a broken neb is what destroyed my lungs.

The good news is now I can work on getting my numbers back since I know what went wrong. I also don't have an active infection so it shouldn't be too hard (hopefully) to get my numbers back. The other interesting aspect is it proved to me how vital my treatments are. I absolutely would not be alive today if it weren't for albuterol, hypertonic saline, and pulmozyme. Missing a week (or two) of effective treatments proved that to me! It makes all the time I sit doing nebs feel worth it even if it is a pain.

The only glimmer of good news is that I gained a lot of weight! I am not quite back to baseline, but I am very very close! Hoping by next clinic I will be back to 125lbs!


  1. Oh my gosh, that is just crazy!!! And my nebs always give out after about 9 months. My nurse at the CF clinic said that nobody is manufacturing nebs that are durable enough for a CFer these days, except for the trusty old Invacare Mobilaires.

  2. My CF nurse was just complaining that they don't make them like they used to... I actually started using my back up neb which is about 3 years old and still running. Guess I got lucky with that one. She did tell me though that most nebs are under warranty for 2 years so to call the company and they should replace it...with another crappy neb.